Claustrophobia

Date: November 25, 2013 at 11:41 am- by Ali- Comment(s): 169

For the past few weeks — months, maybe? — I’ve had this feeling I just can’t shake. It’s new to me and it’s weird, and I’m hoping writing it out might help. Let’s see where this ends up…

A pretty photo leading into a potentially messy post...

A pretty photo leading into a potentially messy post…

I feel claustrophobic in my own life and in my own skin.

There have been days lately where I literally find myself squirming in my chair because I feel like I need to break free. From what? I’m not exactly sure. I’m trying to figure that out.

As we all know too well by now, this hasn’t been my best year. It’s been almost a year straight now that I’ve been sick. The first flare-up feelings began last January. I remember it so clearly: I was at a dance show with my friend Michael on the Upper West Side. I had to leave at intermission because my stomach hurt so badly, and I locked myself in a bathroom stall in the theater for a while before I felt OK enough to make the crosstown trek home.

"Home" doesn't feel like home lately. I don't know why.

“Home” doesn’t feel like home lately. I don’t know why.

And I just haven’t gotten better.

I started to. I think the combination of Humira + 6mp + budesonide + medical leave from work started to kick in, and as I finally let myself relax a bit outside the office, my body started to heal.

So I went back to work the minute things perked up ever-so-slightly.

I know I went back too soon.

The day everything really fell apartment. It was back in March and I busted my ass to pull together a photo shoot with all 10 of Beyoncé's tour dancers. It all came out great, but making it happen was...not easy. After that shoot, I went for a run, threw up three miles in, spiked a fever and was in flare-up land for the months that followed. So basically, thanks Beyoncé.

The day everything really fell apartment. It was back in March and I busted my ass to pull together a photo shoot with all 10 of Beyoncé’s tour dancers. It all came out great, but making it happen was…not easy. After that shoot, I went for a run, threw up three miles in, spiked a fever and was in flare-up land for the months that followed. So basically, thanks Beyoncé.

I went back, and there was a lot happening. It was a very busy time of year, plus there was a lot of turnover happening. On top of that, I had far-fetched dreams of running a marathon in the near future.

In L.A. for a bunch of photo shoots during what should have been a peak week of marathon training.

In L.A. for a bunch of photo shoots during what should have been a peak week of marathon training.

It was too much. My body told me so. Because after the initial “Hey I think I’m feeling better!” waned, I never actually got better.

The week before the marathon, my doctor doped me up on everything legal and nothing fun. We wanted to try anything that might help me get through 26.2 miles with a little less discomfort. I did four shots of Humira in one day, plus a short, high course of prednisone starting at 80 mg/day (for reference, that’s a lot) and then tapering down quickly so I’d be off the drugs on Marathon Day (running while on prednisone isn’t ideal and can lead to injuries or whatever blah blah). I was also given suppositories, which are always a blasty blast.

I loved tapering before the marathon because I enjoyed the extra time not trying to run and hiding out in the bathrooms in Central Park as needed. I got a lot of sleep and I tackled some exciting home projects. (I built a bookshelf! No, but I did order one from Target and then paid the apartment handyman to put it together for me while I was at work. And then I told Brian I built it myself. He believed me. What a handsome fool.) I relaxed and I caught up on a ton of stuff at work. It was good. I felt happy.

And then marathon day came, and it was perfect and wonderful.

That's that happy face!

That’s that happy face!

Soon, though, the marathon excitement settled down and I was back to feeling, essentially, depressed. And I still feel that way. I was depressed for a long time this year — something I keep wanting to write about but, again, am having a hard time letting out — and I thought I was past all that.

Marathon Day remnants in Central Park. The lines are much more faded now.

Marathon Day remnants in Central Park. The lines are much more faded now.

But I’m not. I know I’m not.

I have never felt this overwhelmed before. I keep trying to put it on paper: “What I’m unhappy about” in Column A, and “How I can take action” in Column B. But the thought of starting that is exhausting. It makes me just want to lie down.

I’ve done a lot of lying down lately. I don’t do morning workouts anymore. My stomach hurts too much in the mornings, so it’s not worth it. And I don’t do many after-work workouts, either. I’m tired. I’m always tired. I was at the doctor last week (and the week before that), and my iron and albumin levels are fine. So I can’t even “blame the iron.” It’s just me.

I eat crap all day every day. I don’t eat vegetables, save for the occasional baby carrot, and there’s some form of chocolate in 90% of my meals and snacks. Most of my clothes don’t fit anymore.

Velveeta shells and cheese: a staple in my diet these days.

Velveeta shells and cheese: a staple in my diet these days.

I’ve also been antisocial. I don’t feel like seeing people or talking to people. I don’t want to make conversation. I just want to sleep.

I haven't even gone to see Bernie recently...

I haven’t even gone to see Bernie recently…

But back to Columns A and B.

It all boils down to essentially one thing: “I’m unhappy that I haven’t felt healthy and been able to live my life for a full year.”

I don’t know what to put in Column B.

I’m done with the Humira and 6mp. The doctor said they’re “clearly not working.” He wants me on Stelara, which has a strong success rate with Crohn’s and colitis patients who haven’t found success with other drugs like Remicade and Humira. So that’s me! But Stelara is only insurance-approved for patients with psoriasis…which I don’t have. So I can’t get that. And then there are the very effective fecal transplants, which are exactly as sexy as they sound. My doctor is dying to do this for me — but it’s only approved by the “shitty FDA” (doc’s words, not mine, but I love them) for patients with C-DIFF which, again, I don’t have. Plus, as my doctor said, “If any of these were the best option, we would have found a way to do them already.”

Basically, the drugs and treatments exist. They’re being dangled in front of me. But I can’t have them. So right now I’m on nothing, and as soon as my pharmacy gets its shit together, I’ll start on methotrexate…which I thought was a pill but it’s another thing I’ll have to inject myself (this time with a much scarier syringe, as opposed to an epi-pen-type situation). Next year I may be able to enroll in a clinical trial — but then, of course, you run the risk of getting a placebo.

I finally feel like I know what questions to ask when I see my doctor, but I hate all the answers. And it’s not his fault. It’s the pharma companies, the insurance companies and that shitty FDA.

I know that if I felt better, most other things would fall into place. Or I’d at least feel motivated to move the pieces around to make them fit.

I’d be able to run! I wouldn’t feel so bloated, crampy and in pain all the time! I could eat broccoli! I could leave the apartment without needing to map out every bathroom on the way to my destination! I’d be in control of my own life.

In the meantime, I’m desperate for an escape.

Mountains. Those are what I need more of...

Mountains. Those are what I need more of…

I feel like I am crawling around in my own skin, and it’s an incredibly uncomfortable feeling. I curse New York City daily — when people slam into me carelessly on the sidewalk and I take an aggressive elbow to the rib, or on the crowded subways where people won’t just move in or, better yet, wait for the next, significantly less crowded train.

Everything started coming to a scary head this past week. I felt anxious every day, and on Monday morning I cried the entire way into work. By the time I got to the weekend, Operation Meltdown was almost in full effect.

So Brian and I fled for the weekend.

Objects in mirror are prettier, but more stressful than they appear.

Objects in mirror are prettier, but more stressful than they appear.

We went out to the North Fork of Long Island, which is one of my happiest places. We didn’t do anything extravagant or fancy. We just spent a night in a Hilton Hotel, walked around the outlets a bit on Sunday and ate a lot of cookies, pie and chocolate candy. The closest I came to breaking a sweat was running across the street last night trying to find whipped cream for the pie we wanted to eat after we polished off our cheeseburgers.

I was so happy all weekend. I loved relaxing and being away from everything. I didn’t feel amazing, but I didn’t really care.

As soon as we got back last night, all those feelings of anxiety returned. I couldn’t sleep, and I woke up this morning feeling frantic.

I want — need? — to leave for a while. I want to go somewhere far away. Somewhere without work or bills or health problems or the internet. I want to really relax and figure out what I want and need from life.

Get me out of hereeeeee.

Get me out of hereeeeee.

Ultimately, I know I’ll be fine. Eventually. Somehow. Not sure when.

I also know that in the spirit of Thanksgiving I can still rattle off a list of things I’m grateful for. Tyler, mostly.

Tyler reading the paper. He's pretty serious about current events.

Tyler reading the paper. He’s pretty serious about current events.

Halloween Tyler. He was Elmo.

Halloween Tyler. He was Elmo.

Tyler doing incline push-ups.

Tyler doing incline push-ups.

Tyler rooting for the home team with his foam finger.

Tyler rooting for the home team with his foam finger.

Tyler wearing a strainer on his face. Yeah, I don't know.

Tyler wearing a strainer on his face. Yeah, I don’t know.

And the fact that in the midst of this all, I did get to forget it all for 3 hours and 58 minutes just a few weeks ago.

November 3. A day that will live on in joyousness.

November 3. A day that will live on in joyousness.

So it’s not all bad.

Now, has all this happened to you? Maybe not with the Crohn’s stuff, but a little reassurance? Anyone? If just one person can be like, “Yeah, I felt that exact same way for a while and then here is how I suddenly felt 100% better and here’s how you can, too, Ali!”…that would be great.

(And for a girl who never gets writer’s block and can always find something to ramble about…I’m not sure any of this made any sense. Sorry about that.)

Edited to add this little note: Before you diagnose me with something or tell me to “see someone,” remember that what I write on this blog is only a little piece of my life. There’s lots more going on right now, plenty of which is good. This post was just to try to write things out a bit. Thanks for reading! Hi!

169 Responses to "Claustrophobia"

First of all: everybody feels like this sometimes, I think. Maybe to differing degrees, but everybody has life anxiety. You are not weird and it is not unfixable. Different solutions work for different people, but for me, it helps to eat healthy (I just feel better when I do this, even though I’d rather just eat blocks of cheddar when I feel depressed), take care of myself the best that I can, and to go to therapy. I don’t know how you feel about therapy and I would never push it on someone who doesn’t believe in it, but it really does help. If you have ever thought about trying it, I can’t recommend it enough. Hugs to you. It will get better.

Ali, I have felt this way and still do sometimes. I’m full of angst and feelings a lot of the time! I wish I could tell you exactly what helps, but it’s hard to pinpoint. I don’t think that’s how depression, etc. works. Moods are a weird thing! I find talking about the feeling helps. I see a therapist. Sometimes the feelings just pass on their own. It doesn’t help much in the moment, but it really is true that this too shall pass.

When I said “it doesn’t help much in the moment” I meant knowing that this shall pass doesn’t necessarily help in the moment. I should proof read better!

NOOOO!!!!!! Feeling shitting like that sucks! I was like that, once upon a time. I have Crohn’s. It sucks. But. I got better! And you can, too!! Baby steps at a time. I can’t believe your doctor hasn’t said anything about your diet? What? Dude. Change your diet. I did. Best thing I ever did for myself. I keep a food journal and list all my symptoms for the day. That way I KNOW what I should stay away from.
Crappy days suck. But, you can beat this! You just ran a freaking marathon! You are awesome! I’m so jealous.
Bad days will happen. But it sucks to feel like that all the time! Keep your chin up. Everything will be fine.

Haha what do you mean we haven’t talked about my diet? Of course we have! You should see my little notepad in my phone detailing how I feel after everything I eat 😉

Seconding the above comment. I was semi anti-therapy until a point last year when I felt like I just felt stuck and had no idea how to shake the feelings I was feeling and move past that. If you find the right person, it can be freaking amazing. Also, puppies. Maybe you need more puppies in your life.

I get to spend Thanksgiving with a Tyler AND a puppy!

Ugh, so sorry you are feeling this way, Ali! 🙁

I can’t say I’ve felt this way and I wish I knew how to make you feel better. It seems obvious and I’m sure you’ve thought about it, but have you considered leaving NYC? At least for a while? It sounds like you do need to escape, and get rid of all of the stress in your life.

Do what you need to do to get yourself happy and healthy!

Hope you figure things out soon! We’re all rooting for you!! 🙂

Thanks, friend.

I have thought about leaving NYC, and I go through phases where I feel like I need to get out immediately. But then I get sad thinking about being away from Central Park and the things I love, and I’m not sure I’m ready yet. Brian and I have talked about moving outside the city where we’d be close enough to commute in — like to Piermont, Hudson Valley, etc. — though!

I adore Piermont! I want to live there, and escape the Manhattan madness. On the other hand, I don’t know if I know how to function outside of NYC …

Hey Ali,
I’ve been reading your blog for awhile but haven’t commented before. This post really spoke to me. I understand exactly how you’re feeling. My health is fine, but I’m feeling the same depression you are for other reasons. Funding for my field of work has been slashed dramatically in sequestration, so I’m looking at unemployment for the holidays. It’s so frustrating to have something you love doing be pulled away from you and there isn’t anything you can do to stop it.
I’ve also been eating a lot of velveeta and having breakdowns! I’ve always been an optimistic person and used to call my mood “unsinkable,” but lately it’s all I can do to distract myself from my own life. I’ve even been running less, because the thought of spending that much time in my head sometimes feels unbearable, and it would be so embarrassing to have a meltdown 5 miles from home. So to make a long story short, yes, I know exactly how you feel, and I too want a vacation from myself and my problems.
The good news is, I felt like this a few years ago toward the end of college due to different circumstances. It lasted for longer than I would have liked, but eventually the clouds did part and I was able to see how my problems actually ended up being for the best. I think the most important thing I learned was that it’s ok to feel negative and it’s ok to need a break from yourself. Eventually things will work out and you’ll be back to normal, even if you can’t imagine what that looks like now.

This sounds remarkably like how I felt right after I had my son which coincidentally was also when my crohn’s was the very worst (for the next two years). The biggest “help myself” thing I did at that point was break everything down into very VERY small sections. IE: I only have to get through 11 minutes in the car from the house to work, I only have to type this letter, it’s only 25 minutes until nap time and so on. It sounds so silly but I was completely overwhelmed by my health and the life changes and the only way I could stop feeling like I was about to drown under it all was to literally focus on what had to happen next and how long that would take. I also wasn’t sleeping at all and they put my on Elavil which is for depression but also helped tremendously with sleeping for longer than 20 minutes at a stretch. A little sleep goes a long way as I am sure you know. Lastly – even now – I have to remind myself that my body is not normal and will never be normal and no matter how much that sucks I can’t change it. Sometimes just reminding myself that even on “good” days my body is still at war is a relief. A relief to remind myself that I am me. I can’t be anyone else after all!
I feel for you – you are not alone.

I get that restless claustrophobic feeling sometimes when there is something on my mind or bothering me that has not yet bubbled up to the surface…like it is time for a job change or there is an issue in a relationship that needs to be addressed….for me it ends up being a signal to pay much more attention to when I am feeling that way and when it feels better and think about the root causes so I can hopefully eventually get to a place where I can put something into column A and column B and take some sort of action to get things back on track….

Hugs. I have definitely felt like this (and I’m sure I will again in the future). I agree with others that eating healthy does help me feel better physically, which helps me mentally. I have found that changing my routine up a bit helps – trying a new-to-me cuisine, going for a hike, trying a gentle yoga class, etc. I have also found that trying to think of one thing, every day, that makes me feel grateful/happy, has a positive impact on my mood. It does sound like you’re slightly depressed, and therapy might help as well. If nothing else, a therapist will give you a space to vent and cry and feel your feelings without worrying about burdening a loved one. I saw one for a few sessions, and she was great (she’s in NYC, so if you’re interested, let me know. She doesn’t take insurance, but will help you work with your insurance so you get maximum coverage). It also sounds like you need a bit of a vacation. Can you take a few days off of work and maybe get out of NYC?

Eh, I wish I could! But I was out so much this year, between being sick and then actually going on medical leave, so I’m fresh out of sick, personal and vacation days. Hopefully in the new year, though!

YES YES YES. THIS. It happens to me. My husband calls it “wanderlust” because I just CANNOT stay where I am. At some points, things are just too stressful and I am anxious all the time. And then I feel like I need to escape or go somewhere. It was really bad when we moved across the country and I had no job and was trapped inside an apartment all winter. And again this fall when I got a stress reaction and couldn;t run for 2 months. The beach usually helps for a bit.

But absent a beach, I am a list maker, like you. I usually deep clean my house and then sit at the table list what is freaking me out, prioritize, and make an action plan. Just having the plan helps. It breaks that overwhelming feeling into small manageable chunks. Then I focus on one at a time…because if I think about everything, I panic again. So I do X. Then I think and do Y.

Now I sound like a nut job, but it’s all about perspective for me. If I can shift that, then I’m usually good to go.

Hope things improve!!! (((hugs)))

No, you do not sound like a nut job at ALL. I can completely relate to what you wrote, and I’ve been using the term “wanderlusty” a lot lately! I think it’s more that than it is depression right now which, again, is really hard to get to in a somewhat short blog post. But yeah, it’s a general feeling of restlessness. Little projects around the house definitely help! And the beach!

I totally understand how you feel and I had a rough year last year. I don’t have Crohns, but I was soo frustrated with my life and my work and anything and I felt I’m stuck. I’m used to taking things in my own hand and growing up, I always was told, if you work hard, you will get the reward. Last year I felt no mater how hard I work or no mater what I do, things won’t change. I was soo frustrated all the time and started to hide and lose interest in things. And every Sunday afternoon I had anxiety of another work week. I wanted to sort things out and started to talk to a life coach online (http://www.youronlinelifecoach.com/) . I didn’t want to analyze my whole life, just somebody objective listening and maybe helping me to sort things out. It was eye opening and I realize what I can do and I was able to change things around. 2013 was my year of CHANGE and truly it did change. Life is great now and I really hope things will brighten up for you as well.

Love that you some major changes that have benefited you. That is awesome to hear!

Love that you MADE some major changes. You’d think by now I’d know how to proofread, but I do not.

Thanks for your honesty and articulating this so well. I’m not a psychiatrist but it sounds like you could possibly meet criteria for clinical depression (+ anxiety?). I’m sure you’re sick to death of doctors and the medical system by now, but if other changes don’t help, it’s possible you could benefit from therapy or an antidepressant drug.

And, obviously, if you’re thinking of hurting yourself or someone else, you should see someone. I don’t get that vibe from your post, but maybe someone else this is having an even tougher time than you.

No, I have zero thoughts of hurting myself or anyone else. That’s not even something that crosses my mind.

Yeah, I’m a little embarrassed I even brought it up. (Medical school psych rotation kicked in there for a minute… but then I became a different kind of doctor). That was more for anyone ELSE who might read this and need it.

(And I’m glad to hear that it’s not a problem for you, obviously!)

O Ali, I’m so sorry. Yes, I have gone through a rough season like that last year. work was horrible. My coworkers were terrible. I hated my job. I would stand outside the building everyday and give myself a pep talk just to go through the door. I hated life and I was negative and down all the time.
I wish I could say do this and you will be fine, but I can’t. There is no quick fix, no do this and all will bewell solutions. You are in my thoughts and prayers.

My heart goes out to you, Ali. Add me to Team Escape — it might require some creative planning, but maybe there’s a way you can make it work. I went on a monthlong vacation over the summer after a bad year. I won’t lie and say that it fixed everything, but it was like hitting a reset button and helped me just detach from the things that had been eating at me.

Okay, now I’m not a doctor or anything remotely close.. but I can tell you that yes, you’re not alone.. I have felt that way before. 2012 was a no good, very bad year for me,where everything that could go wrong, went wrong, from job to a breakup with a man I planned to marry, to family illness and deaths. I was depressed FOR SURE, although not clinically, and I never saw anyone about it.. I just know I was. I was tired too – of everything, and felt ever-burdened, and just couldn’t get a smile onto my face without incredible effort. I couldn’t see how things would ever improve or get better for what felt like the longest time, and I couldn’t even remember when they had been so good at one time.. it all seemed grey and false. But then eventually, I was able to pull myself out. Not saying you can, or that the way I did it would be best for you or for anyone (my way = training for my first ever races, spending a lot of time with family and best friends, shutting out/saying “no” to things that brought me tears and anxiety, regardless, and literally moving across the country to be closer to sunshine and my parents). But eventually things clicked, and it got better…and now 2013 has been one of my happiest years. Not perfect or tear-free by any means, but I feel normal again, back to myself. SO this is my extremely long winded way of saying not to give up on yourself or to feel like a nutjob for being sad and tired.. it happens. And it (most likely – again, I’m not doc), will not last forever. Do like Pollyanna and play the Glad Game, even if you don’t want to… it helps, too. 🙂

I LOVE THIS, JOELLE. I am so happy for you, I really really mean that. I feel like the way I feel now is really similar to how you were feeling last year, and I honestly have no doubt things will turn around. I already feel much much better than I did for a lot of this year. Chins up all around. So happy you’re happy!

Thanks Ali! I’m sending positive vibes you way… And seriously, feel free to email me if you ever want to chat!

It sounds like your escape was the best thing for you. I hope you got what you needed and returned with perspective and your positive attitude back!

I’m so sorry you are feeling this way and can relate. Try to give yourself a break and pick a day to just stop. I realize its not that easy but sometimes embracing the bad funk helps you figure out how to get out of it. Try to take care of yourself and do things just for enjoyment, embrace the small things and keep on keep in’ on. I’m rooting for you!!

A lot of people can sympathize with stuff like this, but me? I can truly empathize. For the past two years, I’ve been battling my legs, and running has gotten worse and worse. The longest distance I can run comfortably is about 100 feet before I lose total control over my legs’ movements. Try that on for size. I wish there was a concrete answer for you. I wish there was one for me, too. And all that bull crap about, “If he brings you to it, he’ll bring you through it,” well, I stopped buying that about a year ago. I hope you find an escape for a little bit because the mind and soul need healing just as bad as the body does.

Wow. That’s so intense and sounds so painful and uncomfortable. I’m so so sorry you’re having to deal with this. Thank you for sharing and for a nice dose of perspective — we can all use that sometimes! Take good care of yourself. <3

Not that I know much of anything, but I have definitely (and still often do) felt the way you’re describing. Minus the health part — I’m so, so sorry for that. I can’t even begin to imagine the frustration!

One thing I think you touched on that might help, is staying away from the internet. I don’t know… there are lots of inspiring stories about people who got past it which can be great. The thing is, you haven’t quite gotten past your unique issues yet, and seeing constant reminders of people posting about running, fitness classes galore, and “LIFE AFTER I GOT BETTER” isn’t going to do you any favours. Obviously your body and health are moving at a different pace than others, and the damn internet has this great a way of making us feel worse about our selves once we see what others are doing & achieving.

I have come to love reading your blogs and am always excited when I see that you’ve posted a new one. So I’m not suggesting you go away because you no longer have anything relevant to share.. I guess I’m suggesting taking an “internet break” because it would be one less reminder that you aren’t quite past everything yet.

Feel free to ignore everything I said above if you disagree. I just want to close off by saying I think you’re amazing and your blog will always have a permanent spot on my reader.

Totally agree about fleeing the internet. I’m looking forward to doing that for the next few days while I’m away for Thanksgiving. Much needed! Thanks for sharing 🙂

I am so sorry you’re feeling so badly. I have felt this way and it happens more often than I’d like; I’ve been in therapy for about a year now. Your weekend getaway sounds perfect, and I understand how hard it is to come back from a few glorious stress-free hours… I wish I could help. I hope you’re able to feel better soon.

Also, let me know if you ever want some Larry Gary play time.

I didn’t know you’d been going to therapy. I hope that it’s been helping! The thing is, I know exactly what’s going on and can pinpoint all of my emotions. The frustration I’m feeling is a direct result of my health, so I get it and I think it’s reasonable (I don’t think, as some have suggested, that it necessarily means I need to be medicated!). You get it. You know.

I can totally relate to this feeling!! There are many times when I feel like I am going to crawl out of my own skin–I’ve noticed that this tends to happen to me when I have nothing in the near future to look forward to! But it also happens when I am feeling anxious in general.

Earlier this year, I had a moment where I pretty much broke down and realized that I wasn’t happy with my life. I hated my job. Hated Boston. Hated that I was broke and could barely pay my bills. Well….to be honest with you…I still feel pretty much the same way. But it comes and goes. Right now, I’m pretty much stuck at my job, and while not ideal, I really do like what I do. There are just some things I’d like to change about my job that won’t happen anytime soon (ie: freelancer with the company 4 years, would like to be hired full time, won’t happen). I definitely have my days where I just want to crawl away. What worked for me was journaling my feelings. Also, writing down some actions that you will take to try to improve your life. I know you can’t control your crohns, but maybe there are other things in your life you can that you want to change? I feel like in our mid-twenties, this sort of shift happens. We are growing up and sometimes it’s just not what we expected or thought we wanted…and then we feel trapped. You are NOT trapped! Hang in there Ali 🙂

Give me your puppy and everything will be fine. For me at least. You will probably miss your puppy. (But more importantly, thank you for sharing all this. Totally get it, can totally relate.)

So much of this resonates with me. I searched for years for a diagnosis that I thought would instantly cure depression. Finally found several autoimmune things and thought that by taking care of them I would feel better. I eventually ran a marathon, all the while fooling myself into thinking I was healed/better/happy, and crossed the finish line and immediately knew I had just distracted myself with training for the last 4 months, not confronted any of the issues. It took me hitting rock bottom both physically and mentally before I started to find things to put in Column B. I still struggle with it every day but I think I have a different enough perspective that flare ups now are manageable (always frustrating) but knowingly temporary. Everyone’s solutions are different but I hope you can find comfort in knowing that things getting worse and feeling terrible are not always signs that its just a continual downhill. It may just be a part of the process to get you back to the good. Hang in there, girl.. thanks so much for sharing this. Always helps to know you’re not alone… you’ve reminded me of that.

While I can’t relate to all the Crohn’s stuff, I can relate to some of the other things. I am currently commuting 4 hours every day for work until I am able to find a new job. It is stressful and exhausting, both physically and emotionally. There are days I come home, skip dinner, and go straight to bed. I can’t remember the last time my boyfriend and I actually went out and did something on a weekend. I’m just always too tired and crabby. Adding the stress of job-hunting isn’t helping at all.

Having said that, I do think that new places can make a difference. We recently moved to St. Louis which was the start of my 4 hour commutes. Aside from all the exhaustion, I am definitely much happier in St. Louis than our previous town (which is only about an hour and a half away). I think once I find a new job–something I will hopefully really enjoy–I’ll stop feeling so stressed and exhausted and I’ll feel happier.

Obviously our situations are very different, but considering how much you seemed to be able to relax and enjoy your weekend out of town, maybe you need something like that longer-term. I know things like that are not always practical or do-able (which is how I ended up with my stupid-long commute), but it might be worth considering.

Four hours?! I want to give you a medal. That is crazy. I’m glad you’re happier in St. Louis and I hope you’re able to find a way to whittle that commute down quite a bit. Stress and these anxieties are, in my very unprofessional opinion, all a part of life and having responsibilities.

Hey Ali! I’m a longtime reader, but I haven’t commented before. I have clinical depression and anxiety (fun!) and I definitely relate to the restlessness you describe. I think the immediacy and intensity of those feelings can be shocking. Depression is mentally and physically exhausting. One thing that’s helped me when stuff gets bad is to let go of every extra pressure I’m carrying around — every pressure I can conceivably drop without losing my basic life necessities. If mac and cheese is what you need right now, then eat it, lady! Screw the pants size! (I say that as someone who recently has had to buy all new, bigger pants.) Pant sizes are not nearly as important as taking pressure off yourself. One last thought — have you ever had your thyroid tested? I have hypothyroidism and before I was diagnosed I was extremely tired, achy, anxious and my hair was falling out in clumps. I know thyroid stuff can pop up more often in people who already have other autoimmune disorders. (Crohn’s is autoimmune related, right?) Just a random thought. Anyway, I really just wanted to say take care of yourself! Be easy.

I haven’t had my thyroid tested. I don’t have any of the symptoms you mentioned here — I think I’m just tired because I stay up too late watching “Breaking Bad” right now! I’m not achy, don’t have the hair loss…but yes, Crohn’s is an autoimmune disorder! Thanks for the suggestion — I’ll definitely keep it in mind. Take good care of yourself. xoxo

I am so sorry to hear that you are going through such a rough time. I was tearing up reading your blog post. Health is literally everything because when it goes south, you feel trapped, anxious and things that were once important all take a back seat to getting your life back in order. I’ve been through these “valleys” a few times over the past 10 years (I like to call them peaks / valleys since there really is no middle ground. You are either climbing to achieve a goal or things are moving downhill way too fast). You have to stay confident that things will get better and there will be a point in the future where you start making huge breakthroughs. That saying: when it rains, it pours, is very true. Yeah, it really sucks but if you can deal with a ton of bad new and setbacks, imaging the inner strength you are building from those experiences. A few things that have helped me cope with these various times in life: Anthony Robbins (got the CD set from Amazon); support from good friends (the ones that stick by you no matter what – and if you have a supportive significant other, even better!); and a good diet. This is something I learned to do when I found out I had food allergies at 30 that were causing chronic upper respiratory and GI illnesses. I have dairy & soy allergies (non IgE).. so the dairy was the main culprit causing things like inflammation and constipation in addition to migraines/severe sinus infections. All these symptoms literally stopped when I cut out those food families. I mainly stick to paleo-type meals, but things like homemade soups, avocado and yams make great filler foods when you’re missing you fav comfort foods (mine was mac n cheese). Diet is really powerful and I would say that this really helped me the most physically as far as feeling better. It is an investment and takes time to adjust to new foods, but totally worth it for long term health and more importantly being an athlete! Hang in there and I am rooting for you!!

Noooo no tears! I’m not crying, you can’t be crying! Honestly, it felt really good just to sit and write for a while, and I promise things are not all bad. I realize this post came off as a bit out-there and dramatic, and yeah there’s some drama happening right now that’s unavoidable. But overall, most days are still pretty good days. I actually went to a Tony Robbins event back in March! Brian’s a huge fan of his so I tagged along.

Hey Ali! I’ve had several chunks of time in my life where I’ve felt exactly as you describe (except I don’t think I could have put it into words as well as you have) and the thing that has helped me each and every single time has been a change of atmosphere. When I say that, I mean even in the little things. I switched my route to work or school, I changed my workout, and, of course if possible, it helps to travel every once in a while so that you always have something new to look forward to. Of course this is not an immediate fix, but over time you’ll start to realize that you’ve been happier and feeling more like yourself without even noticing it. I hope you start to feel much better very soon, and I have a feeling you will 🙂

p.s- I really love your blog!

So funny you mention the route change: I took a different way to work today and it made me so happy! Little tweaks like that can add up to a huge improvement, I totally agree.

You “sound” … defeated? No, not that yet, but the picture of Tyler as Elmo is adorable and brought back memories of my grandson in the same get-up a few years back. Anyway..There are times in life that can seem overwhelming, this is one of yours? (unfortunately)? Sometimes, it seems that life hands us these difficult times to temper us, help us to learn…something. In hindsight you will know what this time has taught you. Sorry, not much help. When life has been difficult for me..I’ve prayed. Sought God like I’ve never sought him before, and been truthful with him about my feelings. He never fails to answer…someway.

Some hours I feel defeated. Some days I feel OK. Other days, like this weekend, I feel great! I think it’s just a general feeling of frustration that I’m still sick, plus not having a firm grasp on when/if I’ll finally feel better. So one day at a time is the mantra for now.

I had a really bad flare up of my Crohns a few months after my son was born and for the first time had arthritis come on with my Crohns. Did you know that could happen? Yeah, I didn’t either until it happened to me. It was the worst. Some days an arm would hurt. Sometimes both legs. But mostly, my entire body would be locked and every single movement hurt. Did you know that the bottom of your feet is a joint? I learned that too! The stiffness wouldn’t loosen until two hours after I had my prednisone and would only last half the day. At that point, I was just returning to work from maternity leave, so I opted to feel okay for the work day, but by the time I was home at night, I couldn’t move. It was awful. I felt like the worst mother and wife in the world. It would take me 20 minutes to get to my son when he was crying at night. One time I got stuck in the rocking chair and just had to sit there until my husband could hear my calling.

It took months and months to sort out what was going on. The Crohns doctor had never even heard of such a thing happening, so he thought it was some additional disease and sent me to a rheumatologist. The rheumatologist said it was most definitely related to the Crohns. They fought about it for months while I was worried that I was actually just going insane…am I just a stressed out new mom? Is this all in my head? Lucky for me, the rheumatologist won the argument, convinced my Crohns doc to put me on Remicade and I’m one of the lucky ones that it really helped me.

That year should have been one of the happiest times of my life, but I was miserable. It was terrible watching my son grow and feel like I was missing things I couldn’t get back. But I will say that I learned a lot that year. I learned how to fight. I learned that I am stronger than I thought I was.

I understand everything you are going through. I too hate the doctors and insurance companies and drug companies. It’s absolute hell when you are going through a sickness and no one seems to know how to fix you. I hope it gets better for you and soon.

This broke my heart, Ellen. I’m so sorry you’ve been through such a rough time. Wanna team up and TP all the insurance company buildings and pharma offices? It’ll be fun! But seriously, take good care of yourself and your family and know I’m thinking of you.

First of all, I’m so sorry that you are still struggling. Second, I’m not sure if you are in to podcasts but I just listened to this one last night and couldn’t help but share it with you after reading the bit about fecal transplants. I don’t know if it will help you, but I just thought I would throw it out there.

http://scdlifestyle.com/2013/08/how-a-fecal-transplant-saved-karens-life/

I want a fecal transplant! We’re just waiting for the FDA to approve them for non-C-DIFF patients!

A friend of mine with C diff did her own fecal transplant before the FDA approval using her husband as a donor. She said it was obviously super disgusting but it was a miracle cure.

Ali- I’ve been reading a long time, but I don’t tend to comment. This time, though, I really felt compelled to reply. Right now, I am flat on my back with a nasty pneumonia. I can’t run, I can’t work, I can’t even cook my daughter breakfast without feeling short of breath. And there is not a doubt in my mind that this is happening because of the tremendous stress in my life over the last few years. It has been building and building. And I have been burying all the anxiety and helplessness because who on earth has time to be anxious? For years now, I’ve been dealing with the urge to just run away from it all- to disappear, and not have to worry about awful, mean coworkers, the job I hate, the babies I’ve lost. And now I’m physically ill because I’ve been burying it all. Honestly, I think that talking about your feelings here is a wonderful step. But at the same time, I also think that sometimes we need to listen to our bodies and our minds- if you felt normal when you got away from it all, perhaps it’s a sign that you have too much on your plate, and you just need to figure out what’s really important, and back off on the rest. Personally- that’s how I’m viewing this pneumonia- it’s a wake up call. Now I just need to sort out how I’m going to make things a bit easier for myself. Sending you lots of hugs… I know all too well how you’re feeling.

Ugh, that sounds miserable. I have never had pneumonia so I can’t even imagine. Thinking of you and hoping you feel better and more like yourself soon.

Ali I am sorry to hear that you feel like this.

Could these feelings have anything todo with the meds you are taking. I have the worst responses to medication even if the doctor says it should not have any effect because the dose it to little.

Life is to short to be miserable. If you feel like this make some big changes you are young. Go live somewhere far away from the internet, bills and the rest you maybe surprised to see what will happen.

I was in a situation like that myself and i changed everything around to a life that is simple and even though most people don’t understand how but i am happy with it while when i had the big job and stuff i was miserable and sick all the time.

What ever you choose to do good luck

That’s awesome that you revamped your life and had awesome results! Here’s hoping some day I grow the balls to do the same thing!

I am so sad reading this post. I don’t know you, but you are very brave to share this much about yourself. I’m sad because I can see how badly you feel (the “good” things aside), and how awful it is to be in that place. I was there, in pain, both physical and emotional. I had bulimia and caused a whole slew of physical problems. For a long time. And it is terrible. I can’t imagine what you are living with. But you WILL get through it. I took one day at a time. The big picture was too overwhelming. I wrote in a journal a lot. Every morning, I wrote down a) how i was feeling (physically or emotionally and b) three small, achievable goals for the day. I’m rambling…happy to talk more if you need it. Stranger or not I feel for you….

Noooo don’t be sad! I just want to feel better! I promise I’m OK and life is NOT all bad right now. I mean…Tyler as Elmo, right? Best thing ever. Love the idea of a journal!

I say therapy all the way! It works wonders, just to have an impartial person listen and give real tools for getting through the issue. Sometimes chatting with friends just isn’t enough. I bet CCF has some good referrals, maybe even some for free (I know other groups do). I give you so much credit for this past year, you are pretty baddass in my book.

Yes, some of us know exactly what your talking about. No, not everyone experiences this. I’ve dealt with chronic illness that went undiagnosed for over 20 years and have been living with chronic pain since 2000. You betcha I know what you’re talking about. I have a lot of experience to share…of course every situation is different and we all choose to manage things differently. But if you ever want to pick my brain for ideas or cry on a very knowing shoulder, feel free to hit me up. Despite my crotchety, snarky demeanor I’m actually a really smart, nice, compassionate, maternal-type. Shhhhh…don’t tell anyone! I have a rep to protect 😉

Haha, thanks MILF. As soon as I’m in a snarky mood, I’ll hit you up, promise! For now I’m all “tender love and hugs and smiles.” The snark will return, I’m absolutely sure of it! (And holy shit, 20 years without a diagnosis? Plus 13 years of chronic pain? You’re a trooper. I really mean that.)

Hey Lady. I am so sorry that you have to deal with all of these medical issues. The fact that you smile and show up and get through your day tells me how strong you really are. I have in the past found myself in that black hole. You have start with the smallest changes. After Sandy, I was so there. Accountability was the first step. I worked with Jess on a plan and a goal. Maybe have a conversation with a friend or a coach, or a friend who is a coach and talk through a plan together. It’s winter now, so you need to start moving – even a little. Focus on consistency. And I’m always around if you want to chat. 🙂 I’m not a coach, but I am a friend. xox

Always so good to hear from you, Jen. I know you have plenty to share, and you’ve been through a way worse hell than I could ever imagine. Thanks for the kind words — I promise I’m moving and staying ever-so-slightly active! xoxo

I feel you. I was recently sidelined with a torn meniscus and am waiting on a cortisone shot to work– or its off for surgery. Now I know this isn’t the end of the world. But I miss my runs- and I feel BLOATED and GROSS. And worst of all, I am taking it out on the people who love me the most. I have signed up for a half marathon in April and I am still clinging to the hope that I can run it. Sometimes though, in the midst of everything- it’s just too much. So moral of the story… you’re not alone.

You’re so gonna hate what I have to say, but here it is. It sounds like you need to find some acceptance. Life is NOT what you want it to be right now, primarily your health situation. When I start feeling the “wanderlusty” feeling, symptoms are that I start looking for a new car because my car is the “worst car in the world” or start looking for a new job because “I just can’t stay here another day” — stuff like that. I just want to get out of my current situation and be somewhere new. That’s when I know I need to practice acceptance. And for me that is telling myself “this is what is, and I accept it.” It’s like an emotional reset button. You are very Type A and you are a mover and a shaker. You are in control and can Make.Things.Happen. It’s hard to accept that there are certain aspects of your life that you really don’t have control over. But just the simple act of accepting that, can really put your mind in a different place. I dunno, those are my thoughts, maybe you can find something of value in them. Good luck Ali!

I don’t hate what you have to say 😉 I wouldn’t have ended my post with a plea for advice or a thought-sharing session if I weren’t up for it! So I appreciate you chiming in! I’m actually waaaaaay less Type-A these days than I used to be — promise — and have definitely accepted that I can’t control everything. This year has been a huge lesson in that. So now it’s just a matter of moving forward and making the best of what I’ve got!

Jacqueline says: November 25, 2013 at 4:06 pm

So yeah…I felt this way for over a year…and while it didn’t magically get 100% better (still isn’t)…I did get to where I came to terms with it better and where most days I can be semi happy…I don’t have what you have but I had a bad outcome from lasik eye surgery and lost my mother all within 6 months of each other and have spent the better part of 2 years dealing with debilitating eye surgery…so yeah, email me- I also have a wonderful Brian in my life, I might not make you physically feel better but I can probably offer some hope…

Ali,
As I red your post I kept saying to myself…is she writing about me. I have been where you are and it’s not a fun place to be. I have thought all day about how I wanted to respond…I don’t have any magic answer to help you feel better but I can say that I admire you for writing about it and getting your feelings out…I find that always helps. Also, trying to think of anything to be thankful for is great and Tyler sure seems awesome! Other than that all I can say is that I hear you LOUD and CLEAR. I know the feeling of wanting to jump out of your own skin, or crawl under a rock so that you can just be alone and wallow. Are you getting away for Thanksgiving?
I wish I could help more…you’ve helped and inspired me so much (sounds weird since we don’t know each other…) but I think about you a lot and when I’m having a flare up I always pop back to this website and read your posts and think, Ali can do it so can I. You’ve got a ton of people pulling for you out there, both in the blog world and the real world. Keep on keeping on.

Hey girl hey. I loved reading this post because I can relate. 2013 was hands down the worst year of my life, and it came after two pretty terrible years before. I feel like I tried everything, and nothing really worked. But I guess even though I didn’t feel it working, it was, because gradually everything did get better. Anyway I have no advice for you except “keep on keepin on” and “you do you” and other annoyingly trite sayings. Maybe it will cheer you up to know that I ran my second half in October and totally killed it, totally solo but with an enormous grin across my face. My feet didn’t want to be in shoes for 5 days after that, but sorry I’m not sorry, feet.

Hope you find something peaceful.
xoxo

Hahaha “keep on keepin on.” I love it. I’ll do my best! And CONGRATULATIONS on a kickass half! Looooove it!

Yes. I’ve had this totally happen. Mostly when I was crohnsing too (although they never were able to figure out if it was crohn’s – it was just a year of unknowns, scans, pain, surgery, blargh, blah, blah). I’ve had it happen in shorter intervals here and there. I wish I could say “here’s what I did…” but there’s really no fix. I hate to say that and you know it’ll just be a time plus health plus chance thing, but knowing what I know about you – which, admittedly is just what you write about – you have an energy that’s meant to be buzzing. And that makes it extra hard to fall into a rut.

I believe it will and I guess, well, maybe wear a strainer on your head. That might help for a little while. XO for you.

You know what makes me happy every single day? My neon socks. From you.

I actually started tearing up a little reading this at work because I feel the exact same way. I recently moved across the country for this job (a 2 year temporary stint) and have just been finding it so difficult to adjust and it makes me anti-social, cynical, impatient, and so anxious. All these things that I hate. I keep trying to make lists of goals or resolutions or ways to fix it but like… there aren’t really any ways, I just have to wait for 2 years until my contract is up. So not even the same magnitude of bad things, but exactly the same feelings. I think the only thing we can do is give it time and every day, we’ll learn a way to get better or cope a little more.

Nooooo no tears! J/K, tears are fine. Tears are good. Tears are therapeutic. Let it all out, buddy. That’s amazing that you made a cross-country move — and completely understandable that things haven’t clicked immediately. I’d love to give you all kinds of reassuring “it’ll be OK” words, but all I’ve got is a virtual hug!

Oh, Ali! I wish I would have seen this before leaving my apartment and given you a big hug when I saw you this morning (uh, not sure that would have helped? but still…). Also wish there was something I could say or do to help you feel better now (although, do you know who Boo the dog is? Looking at him might make you feel better!). Hang in there, friend. Always up for a UES/CP walk if you need to get out 🙂

Haha nope, it was better the way we did it. A hug would’ve equaled tears on the way to the doctor. This way I arrived with dry eyes! And yes, I do have a little Boo dog and he makes me smile. He has a striped shirt.

I know that feeling all too well. My boyfriend and I broke up about a month ago and we go to the same fairly small college. I hate it here and even more so now. I often feel like the world is crashing in on me and I just want to stop time to figure things out/take a break from life. Sorry you’re going through this. You are strong and will make it through

Ugh, I’m so sorry, Shannon. Sending you a hug from afar!

Kace (formerly of Then Change It) says: November 25, 2013 at 6:48 pm

Hi…you know I’ve been there. And I’m sure you don’t want to hear it, because I didn’t, but therapy could really, really help. I recently started going (my mom passed away from a very quick, aggressive battle with cancer in August), and what’s funny is we only talk about her occasionally during my sessions. What we’re uncovering now is that I suffer from PTSD from my sickness years ago – from my having these same feelings you’re having now – from how serious it was and how young I was and how I never even tried to deal with it. Seven years of letting shit fester will come back to bite you in the ass, apparently. I spent all this time being paranoid, unhappy, insecure, exhausted and telling myself it was normal, it was just me…wishing to spend just an hour outside of my head. Apparently – not normal! Who knew? It SUCKS to rehash it all, especially with a “stranger”, but my God do I leave there every week feeling lighter, hopeful, happier… a bit more whole. Like one more piece of the puzzle I am was put into place.

A few more suggestions: Been gluten free for 6+ months and my stomach highly agrees (as does my skin, headaches, and general outlook on life). When sick I had a lot of success with chiropractic and acupuncture – still do chiro; once I can find one I can afford I’d love to go back to acupuncture. I also force myself to fill in a gratitude journal each night; to find some reason to be grateful and happy even on the rough days. It blows but eventually you realize in life that happiness is a choice – trying to work on that. Finally, when my mom was getting close to the end, a dear friend (who has been through hell and back and is incredibly positive) gave me the book A Course in Miracles. Now girl – it is PREACHY. And difficult to read. But I read a page or so a day, pick a line that really resonates, and kind of make it a mantra. She suggests even meditating on it for a few minutes a day – swears by it actually. It definitely has made a difference in my life.

So, just some suggestions. Hopefully you find what works for you. Sometimes all it takes is time though…time and surrounding yourself with people who love you unconditionally.

KACE!!! HI!!! I miss youuuuuu! I can’t believe you’re still reading. You are wonderful and I ALWAYS appreciate your “been there, done that, and done that, too” insights!

When you go home for Thanksgiving soak up as much of Tyler as you can. Only a short term solution but go for it. Thinking of you.

yah, i feel like that every time i eat sugar. not right away, but like the next day i’m all “life is noooooot worth liiiiiiiving whyyyyyy” and then i remember- wait, i had a total chocolate binge yesterday, this feeling is lying to me. things are the same today as they were yesterday, i just feel differently and i have to not fall for it. since i’ve been doing the gratitude thing from The Magic, I have more perspective on when i’m really feeling crappy about Something That Happened, and when i’m feeling crappy and then hooking up with all the crappy thoughts that go along with it. i find my mood dictates my thoughts a LOT more often than the other way around even though it doesn’t feel like that’s possible.
anyway. if you’re eating like crap that could be making your thoughts lie to you. before you got sick you loved everything about your setup there in the nyc, it sounded like… i really think feeling shitty is lying to you. don’t believe it 😉

Haha I like where your head’s at.

I’ve actually loved reading through these comments. I’ve also felt like this for the past year or so, although it got a lot better when I left a job that I hated this past spring. I was always anti-therapy but started seeing someone recently, and I’m (slowly) starting to change my thoughts about that.
I also TOTALLY feel the same urgency to get out of NYC from time to time – and that’s from someone who grew up in Manhattan! I often feel trapped in the city, and closed-in. I think for me part of it is adjusting to the hum-drum of daily life, after the intense early twenties (college! first job! living in a new city!) and accepting that not every day is going to be exciting and new. So while I haven’t dealt with the illness stuff that you have, I feel a lot of the same emotions and am working through the same mid-20s crap too!
And, I’m on the UES a lot for grad school, so if you ever need to make an emergency cupcake run and need a partner in crime, let me know. 🙂

Yes, so much good stuff in the comments. Lots of “I’ve been there, too” and “I’m going through that right now, too,” which is always helpful to hear. And a definite YES to feeling trapped in NYC. We are on an island, after all!

Frogoutofwater says: November 25, 2013 at 8:00 pm

So you’ve spent most of the year practically trapped in your (no doubt tiny NYC) apartment because you’ve been sick, and you have, for the most part, been denied the wonderful sensation of running (away). If that isn’t a recipe for claustrophobia, I don’t know what is. (Well, being locked inside my tuba case by mean girls when I was thirteen, maybe. But enough about me.)

I don’t think I can add much to what has already been provided in the form of support and good advice, except maybe this. Is it possible you’re feeling this a bit more strongly than usual because you were on such a high dose of steroids earlier? I know that when I’ve taken courses of steroids (even at relatively low doses and the doctor-approved tapers) for my back trouble, I’ve ended up feeling down for a while afterward. I know that there are many more things in your life going on to contribute to how you feel, but I’m just thinking that you might be feeling this way in a particularly intense way because the steroid course is finished …

SOMEONE LOCKED YOU IN A TUBA CASE???

Frogoutofwater says: November 26, 2013 at 9:26 pm

I was very flexible.
And gullible.

Even worse, they dragged me (in the tuba case) into the boys’ bathroom and locked me in a stall there.

Life “claustrophobia” can be so frustrating! I can relate to a certain degree (minus health concerns) – in the past year I’ve gone from stuck in a bad job and relationship / living situation to unemployed and living with my parents again to self-sufficient with a seasonal job to giving into wanderlust and moving across the country! I’m happy with my choices but it wasn’t a magical cure and I’m still unsatisfied in some ways. I can only imagine that if you have this much support on the internet, you have that much more in “real life” between friends and family! Tyler looks like he could improve things pretty magically!! (The photo of him doing pushups kills me..)

I know this was probably a really hard post to write, but looking through all of the comments it sounds like you’ve inspired many others to share their feelings! It’s always reassuring to know that you’re not alone, and what you’re feeling is not crazy– hang it there, you’ve got a lot of people rooting for you! (and I hope my bad grammar didn’t make you feel worse…)

Ali, I’ve read this post 3 times over the last three hours and I just wish I could make everything better for you. In high school I struggled with serious depression as well as other issues and I never ever thought I could live a normal life again, I thought I’d always be plagued by unhappiness and food issues, but I feel as though I fully recovered even when others said you never can fully recover. That’s not to say I’m never sad or blue, but I’ve never felt hopeless the way I did before. I don’t know what the perfect answer is for you, but you are an incredibly enthusiastic, optimistic gorgeous person and it will get better. Don’t beat yourself up about being sad, it’s normal and it will pass. I hope you feel better chrons-wise soon too!

First time commenter, just coming here to say that everyone has moments like this… ESPECIALLY in New York, where the city has a tendency to suffocate one more often than is at all convenient. My mom always says the only way to live here is if you’re always planning your next getaway. Hang in there; you’ll figure it all out. And until then, try and cut yourself a little slack (if you aren’t, you seem hard on yourself but that could just be the way you write it)… you’re doing ok.

Are you inside my head? I feel like you put all of my thoughts and feelings about life in San Francisco to virtual pen and paper. Want to do a life swap? Revisit this in a few months?

Rooting for you and sending you healthy happy vibes. Since you’re making us all spill: I’m a major claustrophobe. Literally and figuratively. I can’t travel far because airplanes make me claustrophobic, long flights give me panic attacks. It took me 2 years to sign an employment contract at my job because independent contractor sounded “safer” to me–I hate the idea of being tied down by anything. It’s a fear of not having freedom. In the running world, that’s a coach or running plan — makes me claustrophobic. I certainly know the feeling of wanting to get up and go somewhere new, be spontaneous, get away from it all. If you can…I hope you do. For a month. limited internet. I think you might feel 20% better with just a one-week social media break….I swear that’s a huge depression trigger

I am so sorry. i always feel this way in the fall. I think it might be the lack of sunlight? Or the finicky weather that triggers my trick knee (I have RA). I don’t know. But I totally know that feeling of “I have so much to do so I think I can only manage lying on this couch” feeling. I don’t have an answer for you. Other than, you aren’t crazy. You are feeling real stuff for real reasons and that is okay. You had a hard year. The hardest year. Let yourself grieve that time. It’s okay.
On a less serious note: Apparently I need to watch what I am eating too. Ironically, I thought i was really stepping it up in the health department. I was so proud of myself until I weighed myself today and I have gained 5 pounds! What the??? I am so going back to eating crap. if giving up sugar makes me gain 5 pounds, screw it and give me a snickers!

I’ve been there. The unhappiness and discontent was paralyzing – especially on Sundays. Therapy helped. Making changes helped. Putting my wants and health first helped.

What do you love about yourself?
What’s missing from your life?
What do you appreciate about your life?
Are you fulfilled at work?
What does your body need in order to heal?

Another first time commenter! I’m really sorry to hear that you feel so bad. Depression is nothing to be ashamed of nor is seeking counselling.

I’ve suffered anxiety for years and most recent depression after a bad spinal injury (no walking at all, half days at work and lots of weight gain!). I’ve tried counselling in the past and it wasn’t bad. For me personally anti-depressants have been my saviour. This coming from someone who hates taking medication and rarely took panadol even when I was in huge amounts of pain. I feel the medication has given me time to get my health back in order so I can feel ‘normal’ again before going off it. It’s not a long term solution for me, but jees it’s helped throught this hard time.

I know you didn’t want people to say this but please please go see your GP (I’m in Australia, no idea what your general drs are called!), tell them how you feel and see what options are there for you.

We have a fantastic not-for-profit in Australia called Beyond Blue. Do you have something similar? If not check out their website, depression and anxiety doesn’t change for different nations.

To end my war and peace, I really really hope you feel better soon, both physically and mentally!!

Ali, I can relate, I’ve been sick for almost a year as well, not the same sick, but my cancer came back (again) in December this time as fluid in my lungs, it’s gotten worse through out the year and getting it removed via a big needle isn’t working anymore, and they are not sure what the next step is, the doctors have differing opinions of what we should do. I say, do something, I can’t walk up the stairs without being out of breath, I haven’t ran since May or June. I’ve had 30+ chemo treatments which is keeping me stable, I just want my old life back!

Therapist friend chiming in here! Dude. You’ve been really sick for a year – of course you’re going to feel down, maybe a little depressed right now! If you didn’t feel that way, something would probably be wrong. Of course I’m not gonna tell you shouldn’t see someone (c’mon now), but I will take a guess that feeding into the desire to run away from it all isn’t going to be your long-term answer (But does it feel good for a weekend? YES. And should you take advantage of weekend mental health breaks? YES.) Things are kinda not fantastic for you right now. And that sucks. But you have to find a way to live, breathe and get through it. Does that sound harsh? I didn’t mean for it to! I can’t say I can relate to your situation but I can say that I work with a lot of people that have really intense shit going on in their lives that like a disease, they have zero control over, and it’s terrible. All they can do is try to get through, and let out/explore their feelings in some way. For many, it’s therapy. For you, you’ve got friends, family, a fantastic meatball-making boyfriend, running when you can, a blog to express yourself and share your experiences, amongst other great things. It’s a shitty feeling, and it’s legit. But you’ll get through.

Sending you love and banana bread! And wine and cheese, for good measure.

-Sofia

Love this. Love you. Love hearing about your banana bread experiments.

First of all, thanks for sharing with us. I really think it can only be positive for you and it can be positive for us too, knowing we are not the only ones feeling this way sometimes.
I felt this way so many times in my life already. First, I thought I was weak and not thankful for everything I have. Now, I think that it is the way I am. I am a perfectionist and I always want everything to be as perfect as it can be. But, I am trying to learn an understand that I can’t control everything and that I have to let go. It is not easy and I get frustrated quickly. I become pessimistic and it is like a circle : I am not happy / I don’t know how to change that / I feel bad about it / I feel weak not taking actions / I know I want a change and I need to do something / I get frustrated / everything is bothering me… etc…
I don’t exactly know how to change that, but, I know that having a challenge in my life really helps. It can be trying a new workout, signing for a race, starting a training cycle… something new that scares me and I know will make me proud of completing.

Anyways, for you, I think you are hard with yourself. It is totally understandable that you are feeling this way. Keep in mind you have been SO strong this year. I don’t even know how I would have coped with everything you went through. I don’t know you and so it is difficult to say but, from what you share, I am pretty sure I am right saying you are strong. It has been a difficult year. You need a break and a change. I am sure you’ll find a way to feel better soon. Keep positive thoughts. Don’t forget it is almost Christmas. I am sure you LOVE this time or year 🙂 I have an idea for you : come visit me in Paris. You’ll enjoy the change 😉

Sending you good and positive vibes. I hope you’ll manage to figure things out quickly.

Marjolaine

(PS : sorry for my English… :-()

Ali! I’ve been a long time enjoyer of your blog, rare commenter, and I hesitated to comment on this post especially after reading some of the previous comments and imagining how I would feel if people wrote that to me…but I did/do want to say you aren’t alone. I have had two separate times in my life where I’ve felt very out of control of anything in my life (the first time) and very claustrophobic/like I was floating and couldn’t get my feet on the ground (the 2nd time). I know a lot of people have given you specific advice (i.e. see a therapist, change your diet, find a unicorn and make it your pet) but I would argue that the answer to feeling better in these situations is different for everyone, and that all you can do is keep searching and keep making the best decisions for you regardless of what other people say or think. I’ll be thinking positive thoughts for you!!!

Also, I second the fact that insurance/pharmaceuticals suck the big one.

Hang in there! Oh and I would also say that in one case, for me, something that initially seemed really horrible was the best thing that ever could have happened to me. Not saying that will be the case with you, because sometimes crappy life events are just that, but every once in a while something that seems terrible turns out to be wonderful 🙂

Ali, oh my God, ME TOO!! You are totally not alone! I mean, obviously you’re not, I’m the 79th person to reply to this post, haha!! I am on month 14 of an evil flare up, and a couple of months ago I just couldn’t see an end, I just wanted to curl up and not leave the house, not speak to anyone, just not ‘be’. But you know what, we finally found a drug and dose that worked for me and now, just these past few weeks, I’ve started feeling a hell of a lot better! And suddenly I’m looking forward to Christmas – which I WAS NOT doing at this time last year when I was off sick! And I’ve started running again after however many months off! So, you know what, even though it looks like this is ‘it’ at the moment – it’s not. It will get better. Just look at that marathon, you have no idea how much you inspired me by completing it, and you did it while in flare up city big time!!! Stick in there, try and keep strong…you will get there 🙂

When I was injured and stressed out this summer I started going to yoga a lot. Not just the tough classes but also some of the relaxation classes and it really helped quiet the mind. I also treated myself to monthly massages to help reduce the physical tension I was holding in.

Yes! This happened to me last year… Spent whole days crying in bed… Many panicked moments in any line, in any store wondering if this would be the time I pooped myself in public. Then I went on my first vacation, in 4 years, to New York (ironic) and pooped like a normal human for the first time in years! Which was good considering the alarming lack of public toilets in Manhattan. Then I came back home and shit hit the…. Everything. 3 weeks later had to leave for a week due to a family emergency… Return of the normal pooper! And I could eat fiber…. Say what?!? That’s when I realized it was work. So I’m now looking for a less stressful job for the love of my bowels.
If coming to NY worked for me, maybe all you need is a trip to Canada (the west coast of course)

It does get better.

It’s definitely disheartening to realize you are deleting comments of people who are trying to help you. Your post screams of depression. Please get a therapist or a life coach. Maybe you need a new relationship or a new doctor or a change of location, but you should get help.

I haven’t deleted a single comment on this post, so I have no idea what you’re referring to. As I said in my little afterthought, there’s obviously much more to my story. This is just me venting. I’m very aware of my emotions and my current state-of-mind. But…thanks for your concern? Yikes.

Good news! In my unprofessional opinion you’re totally normal. I bet this happens to a majority of the population (it’s certainly happened to me). Also, I also think the nature of claustrophobia/temporary non-therapist-needed depression/wanderlust, etc. is to feel a little alone or misunderstood–and trapped in a “funk” you can’t describe or fully understand.

Bad news: it just takes time to get over it. I’ve gone through bouts of this in my own life that last anywhere from a day to a few months, and nothing helps better than time. I once saw a therapist for my funk, which, in truth, didn’t do anything for me. Over the following month, I just gradually started to feel better, eat better, and want to get out more.

For better or worse, this is likely just a season of your life. If I can get all “yogic” on you, just try to observe the feelings you have, let them be what they are, acknowledge that they’ll someday go away, and be kind to yourself!

While I cannot relate to the Crohn’s aspect of this I totally understand what you mean by feeling trapped with where you are right now. I’m struggling with that too and have no idea what will fix it.
I have an amazing relationship with my man (going on 2 years now) but there’s so many unknowns in our relationship cause the Army. I’m not happy with my job and have zero idea what I want as a CAREER someday. I miss being truly good at something. I have high anxiety. You’re not alone–we all have our battles. Keep fighting Ali =)

While I don’t have chrons I can definitely relate to your feeling of restlessness and life-claustrophobia. For me getting out of the city (and away from the internet and cars and people and noise) typically gives me a little break to be able to handle the day-to-day again.

I went through a serious phase of “I’m not happy but I don’t know what to do about it because all options seem equally as unappealing” but eventually I did figure out a plan that I’m now trying to put into place. If you think leaving New York (or moving just outside) might help, but the logistics are overwhelming, looking at it piece by piece might help it seem more tolerable.

Anyways, what I’m trying to say is just keep looking for what fits into your “column B”. It’ll come. Keep you chin up!

Stacy Dylan says: November 26, 2013 at 11:41 am

HI Ali!
Thanks for sharing. It is very common for people with Crohn’s to go to dark places, or what you describe, as restless, anxious. This is part of chronic illness and is not addressed enough along with the medical care.

My 13 year old son is on Stelara for his Crohn’s after failing every other med and having surgery, etc. It is hard to get. Maybe try this group based in NY, Advocacy for Patients with Chronic Illness. You can search them on line.

I appreciate your openness and honesty. I go through this as a caregiver.

But you will always have your NY marathon day-so awesome!

I’m so sorry, Ali! If you want an easy, cheap weekend getaway, you are welcome to come out to NJ 🙂 I KNOW WHAT YOU’RE THINKING… “New Jersey…yuck”. But where I live is just a cute small town with horses and trails and and open fields and delicious food. And shopping! Very relaxing and easily accessible by train, haha. Plus, I’ll make my friend bring her cute dog over to cuddle with you. Just throwing that out there!

Those days, weeks, months, and years suck. There’s no way around that fact. While I can’t say I’ve been exactly where you are (after all, it’s all pretty relative to the individual), I can definitely offer some close getaways if you’re looking for quick escapes from the city I am convinced could swallow us whole if it wanted to. Check out Shinn Estates on the Northfork if you’re looking for an amazing little b&b that’s actually situated on a vineyard (the only one of it’s kind out east) or Diamond Mills upstate (it’s a fancy but cheap little room on an only mill — you can hear/see the waterfall from every room, and the bathroom floors are heated!). Also it’s near Woodstock, which is always entertaining.

Hope it turns around, but in the meantime (not that I need to tell you; you seem to know) just focus on the little positives. Like stuffing. And pie.

Yes, yes, and yes. And I usually don’t notice I’m there until I’ve been there a while and really settled in. And when you don’t feel well, it’s harder to tell yourself to just deal with it, just be happy. I can tell you for me, and I doubt it’s the same for everyone, but for me if I’m not eating well, my life falls apart. I feel bloated, lazy, sad, oily, lethargic, etc. I’m trying a motsly Paleo diet right now, and it’s helping me, I’m sure of it. It’s hard, but at the end of the day, I can’t keep on feeling like shit all day every day. If Paleo isn’t the magic pill, I’ll keep looking. But I am fairly certain, for me, the answer lies with food.

This is going to be unpopular. After reading this, I’m not going to try to make you feel better and tell you to cheer up and eat more pie and stuffing. I’ll tell you what you need, aside from a therapist. Let’s face it, Ali. Your poor diet is a huge problem. You are depressed because you feel sick and you feel sick because you’re eating crap. Absolute crap. You mentioned snacks, chocolate, cookies, pie, sugary cereal, and mac and cheese. You’ve mentioned nothing with real nutritional value. Stop taking endless medication and try to heal yourself. Actually take care of yourself. That doesn’t mean working out for 90 minutes a day. Take walks; do gentle yoga. Try for one time some sane advice: eat a paleo diet. Just do it for 30 days. People have suggested this to you before and you’ve scoffed because you like cookies, candy, etc. But as a trained dancer, you know how to discipline yourself. It’s honestly not that hard for the compulsive planner that you claim to be. And it’s going to be cheaper in the long run than your medical bills. If you’ve tried everything and nothing has worked, why are you so quick to dismiss this as a potential solution? I have known several people with various autoimmune diseases and all have felt better following this eating regime. Seriously consider this. If not, you’re probably just going to post another sob story three months from now.

It’s OK to be unpopular. I don’t expect for you to try and cheer me up! That’s not what this post was for. It really was just me venting and letting my thoughts out there, which I tend to find helpful as a writer. I didn’t realize people would respond and feel so strongly! The “get a therapist” response is a popular one. That absolutely works for some people and not for others. Which is fine, great even.

As for the diet: I don’t think you can say it’s such a huge problem when you don’t know what my daily food intake is. Yes, since the marathon I’ve eaten Velveeta shells and cheese once, and had plenty of sweets that linger around my office. Before the marathon, and for much of this year, my diet has been much more balanced. I was gluten-free for a while, and eliminated dairy for a few months, too. Back in April and May, I was incredibly strict about my diet in hopes of finding improvement. It didn’t help then, but that’s not to say it won’t in the future, and that I’m not willing to try again. I’ve also taken up yoga recently in lieu of long cardio workouts. Just because I don’t mention every detail of my life in one blog post doesn’t mean you should assume certain things. I get that that’s the reality of having a blog, though.

Finally, I’m not “scoffing” at these suggestions, nor am I posting a sob story. At least I don’t think my life is a sob story! It’s just been a tough year — anyone with a chronic illness can relate I’m sure (as evidenced in many of the comments) — but I’m not nearly as bad off as people seem to think based on this one post. As I said at the end, there’s still plenty of good. I’m not sitting at home wallowing and begging for people to love me. I would appreciate your comment more if the tone were a bit nicer, but that’s not in everyone’s nature.

When you say the following, “I eat crap all day every day. I don’t eat vegetables, save for the occasional baby carrot, and there’s some form of chocolate in 90% of my meals and snacks. Most of my clothes don’t fit anymore.”, you want everyone to think that this is your daily food intake.

Fair enough, reader.

I know this would only be a temporary fix, but I think you are way overdue for a vacation! You never made up for your missed Hawaii trip an a change of scenery and new schedule can do wonders. I have felt claustrophobic in my life many time and yes, eventually it passes but until then, just take it one day at a time.

Yes! My flights expire in April, so Brian and I are trying to figure out when we can make it happen! Just need him to get his arm out of that silly cast…and then hopefully we’re off!

I’ve read your blog for awhile and never commented (at least I don’t remember). I know a lot of people will say they understand, but in some ways I can and hope that it helps.

I was diagnosed early this year with an auto-immune disease (not Crohn’s though), but previous to that I progressively felt sicker and sicker for over a year before doctors figured it out. The disease set off depression and anxiety, because I’m successful and ambitious so I already run stressed out a lot of the time, so it pushed me completely there. I had to take a 3 months medical leave from work earlier this year and even after coming back to work it took another 6 months to start feeling more like myself.

I’d highly recommend temporarily taking something for your anxiety/ depression for the short-term while your body is recovering. I took meds for about 6 months and didn’t have a problem getting off of them, but they really helped in the short-run. Just don’t underestimate how hard this whole situation is on your body and it will take a long time to improve.

Besides that, take a ton of vitamins, especially a B complex. I felt like a new person after taking B complex for a few days. Don’t beat yourself up on the crappy food or weight gain… try to change one thing at a time and enjoy that success. You know you’ll have no problem running and getting back into shape when you feel better. I also let both eating healthy and working out slip for awhile… because I was having a problem eating ANYTHING. Just make a goal to change one thing at a time maybe once a month. Make achievable goals!

Anyway, I hope this helps. I’m sure you have it much worse than I did, but I feel for you. Hang in there!

Thanks, Martha. I’m not super concerned about gaining weight. It’s just been a weird year body-wise because I lost SO much when I was sick, and then gained it back and then some super fast. Just weird, uncomfortable changes. Not a huge deal, and I know it will pass.

I’m so sorry you had to go on medical leave. It’s the worst. You’re supposed to be home, taking care of yourself, but it’s hard to just shut off work-mode.

I hope you’re feeling better and are taking good care of yourself!

Consider this: A trip to Alaska (but not in the winter!) and time alone in the mountains with no one around but Brian and a dog. Trail runs, a couple of moose, maybe a bear or two. Sound good, no? And you can eat all the damned mac and cheese you want, why not? Or maybe Spam and pilot crackers, which is the rage up here.

But seriously, Ali, vent all you want. You’re a writer; it’s what you do, bleed your emotions across the page. What I hate about many blogs is how fakey-cheerful they are: Look at me! I’m running! I’m racing! My life is so swell!

No one’s life is perfect and kudos to you for having the guts to admit that yours isn’t, either. Though it’s kind of amusing that some people seem to think that just because you vent, you need a therapist or anti-depressants. Whatever, eh?

Keep writing, Ali, and keep on being honest and keep on being you and it will sooner or later all fall into place. Trust me, I’ve been in places so dark and deep that I almost curled up and died, but know what? I wouldn’t trade those times for the world because they led me to where I am now. And I kind of heard the same thing in the background of your post, that you’re struggling and feeling stuck but some wise part of you understands that you’re also moving forward.

Okay, I’ve been up writing all night and I’ve eaten too much chocolate and I’m being sappy so I shall shut up for now and wish for you all the best.

YES! I will come to Alaska! And this comment is amazing, thank you so much.

Earlier in 2013, my body exploded for no apparent reason. After a couple months of tests and a gallbladder removal, the pain still hadn’t gone away, so we did an ERCP (it’s a scope procedure). Unfortunately, the ERCP ended up perforating my duodenum and I was in the ICU for a few days, then in the hospital for a few weeks, then home on IVs and “eating” through tubes in my arm for months. I was extremely cranky and depressed and the only thing that helped was finally recovering and getting distance.

My illness was a freakshow and hopefully will never happen again. I’m so sorry for you because Crohn’s seems to be something that you’ll have to deal with for a long time, barring a miracle cure that works for you. So I have no good advice, which makes me the captain of the Olympic Be Super Unhelpful team.

I just wanted you to know that it’s okay to vent and ask for help and then it’s okay to shut it down and not want specific kinds of suggestions. It’s okay to want one thing one minute and then hate that thing the next. There’s no sense to this kind of illness and you don’t have to behave a certain way.

I will also say that I feel you on the weight issues. I couldn’t eat anything but broth for 2 months before my gallbladder surgery and then after the perforation, I couldn’t eat anything at all for another 2 months. I lost over 30lbs and was way too thin, and now it’s all coming back and it’s awful and terrifying to have my body change out of my control. Running hurts now and might always hurt. Swimming feels amazing, so I have that, but my energy levels still aren’t back to normal.

It sucks a lot and then sometimes it doesn’t and then sometimes it does again. I hope that you get a break of unsuckiness soon.

Now I feel like I have to sign off and be all inspirational. I am bad at it. TTYL! BFF! LYLAS! EXCLAMATION POINTS.

I hate hate hate hate hate that you’ve been so sick and basically been through what sounds like unpredictable hell. But I love everything else that you wrote, especially about wanting one thing one minute and then hating that thing the next. So true. Thanks for the awesome comment. LYLAS, BFF!

Ali,

I am SO sorry to hear that you are having such a rough time. I have been a reader for sometime and have always admired how you do everything you can to keep pushing ahead despite ridiculously tough (health-related) circumstances.

I am almost 31 and over the years have struggled a lot with anxiety, depression, panic attacks, and (in my younger years) bulimia and other disordered eating and exercise habits. Although I know that I am prone to both anxiety and depression there was always a situational trigger mainly the loss of my sister to suicide in 2005 and the end of my dad’s battle with cancer in 2007. Later on, other less important and not tragic events (like starting a new job or nursing school) would send me in a downward spiral. Though I still have my moments I have come a long way and the things that have helped me immensely are…

supportive family (which I know you have)

being active when my body has the energy and resting when I don’t

finding a good, straight talking therapist

and going through the Meditation Based Stress Reduction program (created by Jon Kabbat Zinn for cardiac patients at Mass General) this was seriously LIFE CHANGING please look it up if you have time. It was the only thing that broke me out of my cycle of daily anxiety and panic attacks and got me back on my feet.

Wishing you ALL the very best!

“It all boils down to essentially one thing: ‘I’m unhappy that I haven’t felt healthy and been able to live my life for a full year.'”

This is very brave of you to put this out there publicly. Writing an “I’m in the thick of it” post is much harder than an “I overcame it” post.

Going to a therapist or counselor is something that needs to be done 100% on your own volition (unless you’re Amanda Bynes), so I can’t tell you that you should see a therapist. I hardly know you outside what you share online, how would I know what’s appropriate?! But if you DID choose that route, based on what you’ve shared here, I don’t think it could worsen the situation. That A/B column list you mentioned? That is perfect. You’ve already done your homework. Therapy isn’t always about discovering your problems or dissecting your childhood. It can be about tackling that list point by point, and finding tools to help you deal with stress TODAY.

I’ve been seeing the same therapist in New York for almost 3 years, and I think of her as a friend and a coach at this point. It’s not a scene from “Good Will Hunting,” although I’ve cried a couple times over the years. We go through bulletpoint lists I’ve haphazardly jotted down on the subway. We practice speeches I need to make, e-mails I’m scared of sending. Random shit that scares me, like a ceiling fan falling off the ceiling. And of course, the heavier stuff, but only when I was ready and wanted to.

My therapist is part of my emotional toolbox. (Other tools include bowls of macaroni, Gchatting my friends in rapidfire sessions, calling my sister, running, etc. etc.)

I just wanted to share my experience with therapy to show that it doesn’t mean you are losing control. It can actually be a step toward taking control.

Whether you ride this out or seek other solutions, I’m rooting for you, and you’re not alone. NYC this time of year is the pits.

This comment is perfection.

No, gum… GUM would be perfection.

HAHAHA.. I love you, Jenny. For both comments!

Methotrexate does come in pills (at least mine do!).
I totally understand where you’re coming from as I too was too sick and in pain to do anything let alone run or workout for most of this year. Finally on a drug cocktail that seems to work for me but it is hard to climb out of that hole an illness dug for you.

No words of advice as I’m still trying to figure it out, too. Although working with puppies and kittens definitely helps me 😉

Another first time commenter here. I have Crohn’s disease too and up until the spring had been feeling exhausted all the time, low in mood and completely lacking in energy. What changed for me was my doctor realised I was low in vitamin B12. There’s debate in the medical profession about what is considered low (for me it seems to be less than 500). Since the spring I’ve been having regular B12 injections (more shots, sorry!) and feel so so much better. Obviously crohns affects everyone differently, but just an idea.

PS. I really empathise with a lot of what you wrote, and have loved reading (most) of the comments. You’ve got some pretty lovely readers. xx

My comment is just to say I am routing for you! I speak from experience of having a long-term battle with pneumonia several years ago (NOTHING like the battle you have been going through). But just know you are NOT alone and it is perfectly normal to be frustrated and overwhelmed with what has happened to you. Even after “accepting” that it has happened and you can’t control the situation, it is absolutely normal to still feel claustrophobic and down about the past year. What a toll that must have taken on you!

Please don’t give too much thought to the readers who may have called this a “sob story” or bashing your eating habits. They can choose to not read your blog anymore because they just don’t get it.

Your posts have always touched me because they are so honest and let me know that I am not alone in my personal life struggles. Now it is time for you to know that what you are feeling is normal. There has been some great advice above, and while it doesn’t necessarily help now in the moment, it will pass. You are not going crazy.

Best wishes. Enjoy time with Tyler and that puppy! =)

Welcome back; it’s nice to hear from you, even if it isn’t all glitter and puppies. Puppies! No, not helping….
This has happened to me; a few years back. I was so unhappy and couldn’t figure out why so the action plan was nothing. I was stressed, overwhelmed, things I could normal take in stride had me completely freaked out, and I was crying on my way into work at least a few times a week, for a job that I should have been loving. The husband made me see a psychologist, and it worked, certainly not overnight, but it did help. Now I am absolutely not suggesting the same for you, especially because you threw in that little bit about not telling you to see someone. I will say it sucks and I hope you work through it soon. Oh and Puppies! Still no….

I would say some of the best therapy would be to write down all your frustrations and then miraculously have 100 people give validating and reassuring feedback. So I guess you can check that one off your list! My real point is that your blog is awesome and I’m jealous of your blogging successes (like happy-for-you jealous though, not angry jealous).

As for actual things that make my life instantly better, I just try hard to list off all the good things in my life every time I realize I’m focusing on the one bad thing. It seems like you’re pretty aware of the good things, but I get in the habit of starting to list everything bad so I can feel extra-sorry for myself, and this actually just makes me feel more miserable.

And duh, puppies. Don’t try to gain happiness through a weekend puppy here and there. Get your own, it sounds necessary at this point.

Hang in there, Ali. The sun is coming.

Rx: Grapefruit candle Sunday x 2 hours

Rx: Spa Castle http://spacastleusa.com/ny/

I can’t begin to relate to the illness portion of what you’ve been through, and basically being at the mercy of your own rebelling body. I can’t imagine the level of suckage. I have, however, flitted around the edges (and probably more than that) of what you describe here, trapped by a job and boss and educational situation I felt I had no control over. At the time, I believed that the only way out was through (even in retrospect, that probably was the *best* way out), so I put my head down through a miserable two years. Two years when there were, indeed, times that I wanted to crawl out of my skin. Plenty of times I broke down to my husband (who was living 2,000 miles away) over Skype. PLENTY of times I wanted to sink into bed and not get up.

But somehow…I did keep getting up. I did keep going to work. I did finish what I set out to do. And then, when I – and the rest of my life – were in place and ready for it, I made a big enormous change. And the result? More challenges – and happiness – than I could have imagined. I don’t know if I “had” to live through that first part to get to the second. I don’t think I “deserve” this because of that. I don’t know how to tell someone how to navigate a similar-but-different situation. But I do know this: Just keep moving. Maybe it feels impossible, pointless, or downright ridiculous some days – but KEEP MOVING. And eventually, somewhere, with some of your own doing and some beautiful coincidence of time and place, you will come out the other side braver, stronger, and happier.

Thank you for sharing this vulnerable post, and opening yourself up to lots of good – and bad – stuff that filters through the blog world. Hold on to what resonates with you….leave the rest….and just keep moving. I, for one, will be rooting for you.

my story in a nutshell….when i was 25 my husband (who i had only been married to for 5 months) died of melanoma. I was holding his hand as he took his last breath. Then life went on and i was going to a wedding or a baby shower literally every weekend because at 25 most of my friends were in those lovely stages of life…I managed to keep working and keep “living” but i developed some major anxiety. Just as you describe….i was squirming around in my own skin. I remember each saturday i’d feel anxious alone in the house so i’d venture to TJ Maxx and walk aimlessly around the store until anxiety would set back in and i’d drive home and basically cry all day. Being introduced to running 7 years later literally saved me. But recently I’m finding that as my friends and family go through tragedy i go right back to those feelings. It’s been 15 years since he died and i swear i’m having a “relapse”. While my health physically is pretty much totally fine, I feel my mental health slipping at times. The only thing that makes me feel better is spending time with my friends and being there for them when they need me. And always trying to be the happy person i know i’m supposed to be.

I have no real advice for you but i just wanted to say that you should always have hope. And while it makes sense that you would want to be anti-social and withdraw I suggest doing the opposite. You’d be amazed how much your friends want to share your struggles and be there next to you as you travel through this health-hell. I hope and pray for a crohn’s miracle for you. Something that will put your nasty flares at bay forever. Despite feeling crappy for so long you have inspired and entertained many through this blog.

I have said in the past, “life just gets in the way…” Sometimes illness, loss, grief, change, so many things can make life claustrophobic and overwhelming. Life just gets in the way of whatever you consider normal. This has also been a tough year for me, and I am recovering. Realizing that everything truly does happen for a reason. While you may not think that at the moment, days, weeks, months… even years later it will be a honest realization. You will overcome this and your path will change. I keep telling myself a new year, new challenges, but also new joys. Be thankful you are alive, and have a loving family and set of friends. You will overcome this.

Well I read your disclaimer and now I feel like one of those people who is going to tell you to see someone or try something.

But as someone who has experienced those very same feelings and knows there is hope on the other side, I want to offer my encouragement and advice. I would strongly encourage you to ask your doctor (any one will do) to do a screening on you for anxiety and depression. My OBGYN did it for me after I felt as you described for a few months. It all came to a head for me when I looked in my closet before work, and couldn’t decide what clothes to wear because life was hopeless and a big black hole.

It would make complete sense for your battles this year to have triggered anxiety and depression, and there is no shame in having it checked out. For me a combination of meds (I know, the last thing you want right now) and therapy has helped me to identify my triggers and helped me to cope better.

Things aren’t perfect, but they are better. And I want them to be better for you too!

Ali, I am convinced we are living parallel lives right now. I have also had this lingering foot injury since January and it has greatly affected my life. I’ve been off work since then.
Lately I have had that same feeling of anxiousness and panic. I can’t really describe it either. I just feel off and like I’ve been away from my normal self for so long.
Maybe it’s the season and we’ll both have a great new year soon.
Happy thoughts coming your way.

Yes. I have fought this too, with hard hard work i beat it. I have Crohn’s, Colitis and CTD. No longer a runner, i am late stage IBD. I have days that i wanted tear my own skin off just to escape. And then i found help. Three things. An ipod, 5-htp, the BRAT diet mixed with macrobiotic diet. The nature of IBD is that everyone responds differently. Something that is a life saver for one, is deadly for another. But i think you are having a problem with low serotonin, for me 5-htp got me thru it. Contact me if you want more info, i don’t want to push anything.

As for the ipod. Audiobooks! You need to escape from your sick body, but you can’t, I understand that. But an audiobook can a least take your mind away, maybe even giving your adrenal glands a rest. Stick with books that make you happy, nothing intense. I can recommend a list for that too.

I wish the best an a settled mind

Forgot to mention, I can’t spell or proof read to save my life. And I am a writer… I like to keep the creaters of spell check employeed.

Paleo. Great diet, if you can digest protein. If not, it’s lethal. I have ulcers and inflammation from my esophagus to, well… Let’s say the end of the “road”. And my cat has IBD too. No joke.
I am nearly bed ridden at the moment and have been for over 10 months. I am on Prednisone, taper because i am now allergic to the filler. About to start Hydroxychloroquine because the systemic inflammantion is off to destroy some organs and the nerves on the left side of my brain. Not helping writing skills! I am 44, i have had this 44 years. I have had down, painful and sad days. But I have a wonderful life an almost all of the time i am happy. Yep happy.

Or maybe i just embraced the crazy. 🙂

another reader says: November 27, 2013 at 8:27 pm

I love your honesty and your courage to say what you think. You must be a really strong woman and as everyone can see you had a great impact on others. You can be really proud of yourself. If you mind, I would like tell you what I can see just from browsing your site (I don’t know you and I don’t know what your life is all about and I’m certainly no expert on your bad disease, so I won’t give any advices on that). You ran a marathon. That marathon brought an emotional high. It’s over now. Without even thinking of further problems this fact alone might be enough to feel depressed now. Maybe you just need something to look forward to. I would recommend: sign up for a new challenge! Keep going!

I don’t have Crohn’s, but I absolutely recognize that feeling you are describing. In me it produces a mad desire to do something drastic, like move across the country or quit my job and take up permanent residence in a sanitarium if those things still exist. Instead I dye my hair. It’s all about control. When I cannot control anything, I can control the color of my hair. And for some reason that little bit helps me through for a few days, maybe just long enough for some other piece of sunshine to make its way into my soul. It’s only a temporary fix, though. You know the only thing that can make any of this better really: time.
Oh, and I second the praises of a good therapist. You are under extraordinary stress, and it’s going to do its damage to you.
I hope you have a lovely Thanksgiving with family and friends.

Seeing as how I’m lucky #150 to comment, you’re likely realizing that you’re not alone … but it can still feel like it. It can feel like every day is your own fight that you didn’t sign up for — and it’s EXHAUSTING.

I hope you don’t mind that I used this post to fuel my Thanksgiving post today. I’m always in awe of how transparent you are on here and felt like I should share a little of my story: http://bit.ly/1b1iG7C

I have no helpful advice — only to be grateful for those who stick with you throughout all of it. (And scope out bathrooms everywhere you go, but you already know that.) Sending healthy vibes 🙂

Frogoutofwater says: November 28, 2013 at 3:27 pm

You might already have received too many suggestions about what you could try to feel less claustrophobic, so I’m not sure if adding one more will be too much. But here goes.

There was one major event in my life where I felt really sad over a long stretch of time and also felt a building-up sensation of needing to escape. It was after my mother died after a short illness. I got past the complete “break-down” grief in a month or so, but was left with a lingering sadness and depression for months afterward. Not surpring in the circumstances of course. I remember reaching a point where I felt like I just needed to escape from my day-to-day life, pleasant as it was (and really, how bad can life be when you’re living in Paris as a newlywed?) And yet I felt the need to escape.

Strangely, one of the things that makes me feel at peace is studying, and one of the best ways I find to escape stuff that bugs in my daily life is to study a foreign language. I think it’s because I don’t know a lot of the words I need to wallow in my thoughts in sadness – and when I study a language I try to think in that language. So I ended up filling my head with everyday words. I also escaped to a small town by myself and took an intensive one-week course. I ate, studied, spoke and read French for a week – and something in me just calmed down.

More recently, I took up photography as a hobby and I’ve been really getting into it. One of the strange things I’ve discovered is that when I’m photographing, I tend not to notice the kinds of things that bother me or make me anxious. For example, I’m almost phobic about bugs. And yet I can hang out at sunset surrounded by mosquitoes and not be bothered, because I’m literally focused on something else. And photography has got me out and exploring the city, seeing it differently than I ordinarily do. I can stop and start when I want, I can photograph indoors or out, and I see something new every day.

Both of these activities (learning a language and photography) had me exploring a world from a different perspective and so they provided a kind of escape from my everyday existence, as well as requiring a level of concentration that almost demanded that I pay less attention to the things that sometimes trouble me.

I’m not suggesting that you take up French, or photography, but rather suggesting that you might want to look into an activity that is fairly different from what you ordinarily do in your work and playtime. Choose something that interests you and that requires a significant amount of mental concentration – and also something that accommodates your physical condition (e.g., outdoor freestyle rock-climbing might be great for focusing your mind but you don’t want to be hanging 20 feet up a wall and need the bathroom).

Ali, As a dreaded crohns/colitis patient myself I have to say that if you didn’t feel this way at some point you would be abnormal! For me, this feeling of hopelessness, irritation, tiredness, and overall run down feeling was in towards the end of a very bad flare last year. I came off of a 70mg taper, was pumped full of humira, Immuran and a handful of other “I hope this makes you feel a little better” meds. My blood levels were fine, my iron was fine, but I felt tired and alone and overall angry at life. I was angry that my hair was falling out, I was angry that I couldn’t run, I was angry that my other half had to watch as I laid in the fetal position for 90% of my day. Every meal hurt and every step I took hurt even more.

It gets better! I promise. On day you will wake up and you will feel better. It took over a year to get my last flare under control and I was miserable every step of the way! Then once I started feeling better my gallbladder started acting up. Its always something. But we’re strong and we will get through it. The pharma companies stink and I hope they figure out something to get you feeling better soon.

For now just keep traveling to the north fork, enjoy your happy places-Mine personally is the Grateful Deli in Southold, NY. Keep your chin up and allow yourself to feel the way you are feeling. Its normal (especially after a pred. taper). Know we’re here, waiting for your next post, and cheering for you every step of the way!

Hi Ali!

I know you probably get lots of advice thrown at you from strangers…..but I want to say I identify with your struggles a fair bit. I don’t have Crohn’s, but I am also a driven, ambitious person who tends to push herself (maybe too much), in running, in work, in any aspect of life where I perceive I can be evaluated or ‘do better.’ I’ve also struggled with some depression and anxiety since I was a teenager (I’m 27 now), despite being perceived from the outside as an in control, perfectly ‘normal’ person (I’m learning there is no normal!). I really identify with your desire to compare and analyze how you feel now with how you want to (or ‘should’) feel–Column A vs Column B. Thinking through steps and reasons to feel better can help, definitely, but after trying different methods to feel better (including therapy and being on anti-depressants for a few years), I’m trying a new approach, which is really about being mindful and accepting with your feelings and thoughts. Analyzing the gap between where I am and and where I ought to be only makes me feel worse, I find. I’m personally trying to be more mindful and accepting and compassionate with all my feelings (even the ugly ones that we are embarrassed to admit), because they do eventually pass, and trying to analyze or fight my way out of them just leaves me feeling frustrated and tired and like something is wrong with me. It’s scary to let myself accept and embrace my sad feelings, because what if I never get out of the black hole? But I find I do, eventually, and not fighting it leaves me a bit more calm and at ease, and I seem to bounce back a bit quicker. So yes, now I’m slowly becoming one of ‘those people’ who reads about mindfulness and meditation on the weekends. 🙂

Just some personal experience I thought I’d share!

Wow! So many comments, you probably don’t even need mine but here we go. Having been through an eating disorder and struggling through postpartum anxiety I get the feelings you are having and the itchy sensation. Many feelings of depression and anxiety coincide. I here you. It really sucks. Have you ever heard of the therapy called DBT – dialectic behavioral therapy. Anyway, it is what I use.I am not saying oh you need a therapist or should get one. That is everyone’s own decision. Personally I do. either way the skills I learned in DBT have helped me a lot manage the anxiety and things that seem so uncontrollable. Just a thought. You can even google it. I think I blogged about it once. I wish I had more except to say I am sorry you have to go through this. I know this sucks so much and it is not ok. But big big hugs. Otherwise I guess I can put my health care attorney hat on and we can always see what we can finagle into with the insurance companies.

These post definitely hit the nail on the head for me! I’ve definitely been feeling for awhile now that there’s something more out there, but I’m not sure what it is. I’ve lived in the same area my entire life, and I can’t help feeling that there’s so much more to explore out there, yet I get so worried thinking about leaving. I suppose the grass is always greener. I can’t exactly pinpoint what is wrong or what is bothering me. Wanderlust I suppose. I completely understand!

Also, I think that things eventually DO get better, in some way, shape or form. Last Spring, my anxiety went into hyperdrive for whatever reasons and I felt so completely out of control of my own life. It was so confusing. Things that had never made me anxious before were terrifying. Taking back control of my own life (and therapy + medication) have definitely helped. Running and other exercise helps too, which is good because I have 13.1 miles to run through the streets of DC this March. I’m excited that the half falls in March too, because those miles will be a celebration of taking my life back. Anxiety isn’t in control of me anymore – I’m in control 🙂

Sorry for the long comment, but I suppose my point (if I have one?) is that for me things have gotten exponentially better, and I hope they do for you too. I know from having a blog as well that there always just little snippets of our lives and not the whole picture, but I truly hope that things get better for you!

Wow apparently I can’t proofread – this post not these post. My goodness!

Hi Ali, fellow runner and crohnser!. I have been flaring for almost three years now. Haven’t had a solid poop since high school. Sometimes when I run I have to stop and poop in the bushes. Yeah, I know how you feel, I have been there physically and mentally. I was constantly on the verge of tears for who knows how long and I just couldn’t shake it. I know I wasn’t clinically depressed, just going through a rough patch. It was hard to feel so bad for so long and not be able to change it, but I just had to keep trying. Eventually I started having more good days then bad. I began feeling gratitude for such great friends, family, and opportunity. If its an option, volunteer. It feels great and helps you get your mind off of stuff. I think this video sums things up, I guarantee this will pick you up: http://www.youtube.com/watch?v=gXDMoiEkyuQ Take care and hang in there

I have anxiety, so I know these feelings so, so well. Mine always gets worse in the winter, when the days are short and darker. It’s nice to know that I’m not alone. Thank you for sharing your thoughts, and I hope that you get some clarity and begin to feel better soon!

While Chicago is no where as busy and overwhelming as NYC, I def feel smothered in sometimes and have thoughts like “will I ever have a savings account that isnt a joke? will I ever had a dishwasher?!” Then I go to Wisconsin to see #elliot and relax (and eat cheese – when in rome?). Then after a few days of being in the middle of no where, i realize i would rather have no dishwasher than live in a place that requires a car to get around. So basically I’m saying you should go to Wisconsin for a few days… hang out with the locals… and then you’ll realize new york is the best. 😉

I never comment on blogs but I can so relate to this. 2013 SUCKED. On xmas eve last year, my doctor found 3 tumors in my uterus (benign thankfully). I spent the first 9 months of the year getting hormone injections that put me into menopause and taking a plethora of other drugs attempting to shrink the tumors (it didn’t work). During this same time I started a new job and went through (still going through ugh….) a very painful break up with my long time boyfriend. Let me tell you, a break up on top of wacked out hormones is sooo not ideal. Eventually I had surgery and I am fine now physically. Every day of this year I felt claustrophobic, anxious, stressed out, sad, and scared. I wasn’t able to run and do the things I normally do during most of the year because of surgery and just generally feeling like a 65 year old woman going through menopause. Your illness is so much worse, so I know you have so much more to deal with. But I can relate to feeling like you can’t live the life you want to be living. I definitely don’t have all the answers yet either, but my advice is to try to enjoy the little things as much as possible and everything will eventually fall into place. Easier said than done I know 🙂

I used to run marathons (5 be to exact) and run all the time. I loved running! I started getting low back pain a couple years ago and it’s never been the same since. I have good times and horrid times with it. I feel like I’m too young (28) to have this, but it is what it is. I’ve tried lots of treatments and some have worked better than others. I am feeling good right now and I feel like things are starting to look up! I was actually jealous when I saw your marathon pictures. You are awesome for running that. This will pass… you won’t be in this much pain for your whole life. I know that it’s depressing. I’ve been depressed about my back pain and cried lots too. It’ll just make you stronger and appreciate life much more when you start feeling better!! Hang in there and don’t let this take your spirit.

I haven’t stopped by since your marathon recap and am so sorry to hear the way things have been going 🙁 At the same time, I’m relieved I’m not the only one. I realize how insanely selfish this sounds, and I promise I don’t mean to be. My Crohn’s hasn’t been nearly as bad as yours this year; however, I’ve just felt lost. I’ve felt like I’ve lost who I am. It’s scary and makes me feel like I’m floating through my days, which all blend into each other now. (Also, don’t worry, my entire diet has been junk food with a side of more junk food and a dollop of chocolate – ok, ok, the dollop is pretty large. I realize this probably isn’t helping me feel any better… I smell a new year’s resolution in my future…) I just wanted to comment to let you know you’re not alone (and hopefully things have improved since, I’m off to read the rest of your posts now so I’m soon to find out!) and that it will get better – it has to get better. I can’t help but think it’s part of being in our 20s, too. My family hinted this may happen, but I didn’t want to believe them haha.
You do have so much to be thankful for and hopefully the methotrexate is helping (the needles are scarier than the humira pens, I agree!). Happy new year, Ali! Here’s to an infinitely better 2014 🙂

Lynn McKay says: January 13, 2014 at 2:34 pm

I would suggest you check out the website: http://www.knowthecause.com/. So many issues are cause because the digestive tract does not get the nutrients it needs. Also check Jerry Brunetti http://www.westonaprice.org/thumbs-up-dvdmedia/cancer-nutrition-and-healing.