Pity Party

You might be surprised that I’ve titled this post: Pity Party. But I have to be honest with you, I’m finding things hard right now. I’ve been in this flare since May 19, tried all sorts of medicine, and now after two weeks of being on steroids, I’m still not feeling much better. I guess I’m just feeling a bit beat down and wishing that life could be “normal” again.

Funny, I got pretty comfortable when I was in my remission. Life was good and simple. I could eat what I wanted. I could go out to restaurants with my husband and friends and not worry about what I would eat and the impact of this food on my body. I took for granted being able to go to my yoga studio and not worrying about having to run out for the washroom. The location of bathrooms was not an all-consuming thought.

And now, now, life just seems to be so darn unfair and frustrating. I know that last week was my one year anniversary of my ulcerative colitis diagnosis and in my post I wrote about how ulcerative colitis has taught me to appreciate the small things in life. Well, I guess right now, I’m simply not feeling the same way. Today I really just wish I could be healthy and not have this disease hanging over my head.

I’d like to open the fridge, make a big salad full of raw vegetables and then eat a sliced raw apple for dessert. I’d like to go out for sushi with my friends. A bowl of red grapes would be perfect right now. Oh and peanut butter – to slather some peanut butter on some celery sticks and chomp away while reading the last Steig Larrson novel – now that would be perfect.

But more than the food – it is just the feeling of knowing that my body is working that I miss. I look at myself in the mirror and I see a lean, tanned, fit athlete. My muscles are defined and I have a great cyclist tan. But my cheeks are a little too sunken in, I have circles under my eyes, and my stomach is a little bit bloated.

Yes, I’m feeling sorry for myself. I’m sorry for burdening this on you. I’m pretty sure that you’re going through your own fight with ulcerative colitis and the last thing you need is to read about my tales of woe. But I just need to get this out somewhere. I know these feelings will pass and I’ll pick myself up and keep chugging along. But geez, some days it is so hard to get up and face the reality this disease.

I’m fortunate to have a very supportive husband. He does his best to appreciate and understand what it is like to have ulcerative colitis. But I hate burdening him with how I’m feeling emotionally and physically. I’m pretty sure it must be hard to see someone you love feeling so rotten and at times helpless.

Sigh. I guess really the only thing I can do is think about the goodness in my life. After all, soon enough I’ll be out on my bike – just me, two wheels, the open road, and my iPod. I can pedal away from my demons and just enjoy the power of my body. I’ll do my best to keep these positive feelings with me for the rest of the day and take time to savor the gifts of life. I know there is always a plus side but sometimes it is hard to see this.

Have a good one. And again, sorry for being a downer. I guess I’m only human…. (Time to go find my superhero cape!)

8 thoughts on “Pity Party”

  1. I SO know how you are feeling right now! I am also, I think, sliding out of a remission period, feeling the flareup starting again, and just sick and tired of feeling so awful, every day, with what seems like no end in site. There are days when I say to myself, “Is this what my life is going to be like, from now on?” and I cry.

    We’re entitled to those days, I think. We’re dealing with something huge, something much more difficult than most people realise, and we ARE only human. As long as those days don’t beat us down permanently, it’s all right. Hang in there.

  2. Hang in there.. You are allowed to complain! UC SUCKS! :(
    I hope you start feeling better soon!
    Have you felt any side effects from the steroid use?

  3. It is ok to have a pity party…I think we can all join in at one time or another.
    I hope your steroids kick in and work for you very soon….keep strong!

  4. I know exactly how you feel vicki. My flare up seems to have lasted the best part of 18 months now broken only by a few weeks of remission. All my meds have been increased and im definetely feeling the side effects of the steroids. Fortunetely no moon cheeks this time but bad insomnnia and sore gums.

    My biggest moan is that I have just graduated university and after 4 years of hard graft gaining a masters degree I want so badly to save up and go travelling before embarking on a career but colitis has is currently stopping me from doing this. I simply cant uproot and live out of a bag for months on end like my friends can simply because of the army of meds i need and the time spent on the loo.

    Im really hoping my current diet combined with the meds will see an improvement but I know its going to take time and its thoroughly depressing. Iv cut out gluten, wheat, yeast, lactose and alcohol and im beginning to see improvement (less D, no blood) so fingers crossed im on the mend.

    Hope you see the positive side of life again soon, your not alone

  5. Thanks so much for the feedback. I really do appreciate it. I suppose like anything ulcerative colitis brings with it highs and lows. Having a better day today and I’m working myself out of my funk. Realized at the end of the day yesterday that I had let the disease control me rather than the other way around… When this happens it is easy to forget the good stuff and just feel broken.
    Nick, wow – I really hope you feel better soon. I agree traveling and getting out in the world are musts before settling down. I know a few people have posted on various personal uc blogs about traveling while in a flare. Might be worth reading these posts if even for some inspiration? My thoughts are with you and I hope you can get out and do the things you want.
    Thanks again for the responses. Admittedly I was a bit nervous posting such a “not-so-positive” post.

  6. Hi Vicki,
    I’m there with ya sista. I’ve been in a flare since beginning of June, in and out of the hospital, iv steroids, remicade…the whole bit! I am home now after 20 days in the hospital, with my husband and 3 young children and I’m feeling very crappy. Its hard to find the energy. Hang in there…it will all work out. You will be back on your bike in no time!!!!
    Best of luck to you.

  7. Yes, pity party on Friday I had….iron very low, they wanted to send me to hospital, but I said no..but moments of feeling very depressed, and sad…thanks for sharing, when i read it on Friday I felt less lonely!!



  8. Thanks so much for the words of support and encouragement. It really helps to be reminded that I’m not the only one who has these feelings at times. It is amazing what the power of words can do to help. Keep on keeping on and we’ll all get through these rough times.

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