Fighting Hopelessness

I’m at the end of my rope with the UC. I feel like I can’t take it anymore, but I don’t have a choice.

I put on an act most of the time: being brave, dealing okay with a sucky situation. I make a lot of poop jokes. And sometimes it is real. Sometimes I am brave and resilient.

But sometimes I’m not.

Partly I put on the act for other people, but mostly it’s myself I’m trying to convince. I want to be strong and brave and resilient. I want to be well enough adjusted to it that I can make jokes about it. Sometimes I do believe that about myself.

And sometimes I come home and sit on the toilet and cry. I feel like I’m losing my life to UC. Oh, sure, I’m still alive…but without the quality of life I need to be okay.

A lot of the time, I can’t socialize or exercise or grocery shop or leave the apartment or eat because the symptoms are too acute. Between the chronic dehydration, malnourishment, and side effects of the immunosuppressants, I have no energy. I’m in constant pain. I’m bleeding, although in relatively small amounts. I don’t sleep well because i have to get up and run to the bathroom, sometimes 10+ times per night. I take 12 pills a day for the UC, and I’m probably about to start giving myself shots. I practically live in doctors’ waiting rooms and exam rooms.

I could deal with the appointments and the meds and the diet if it got my symptoms under control, but that hasn’t happened so far. It’s better than it was at the start, but it’s still taking over my whole life. I’m bordering on suicidal.

It triggers a lot of trauma stuff. Some of the symptoms, especially bleeding and rectal pain, are triggering, as are the medical exams. And there’s the overarching trigger theme: I have no control over what’s happening to my body. I hate it all so much.
And I feel like I shouldn’t talk about it—be brave and shut up. But maybe talking about it is another way of being brave.

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7 Comments

Filed under health, psych

7 responses to “Fighting Hopelessness

  1. Ultimately, none of us have much control over what’s going on in our bodies. We just live in a comforting delusion that we do. And that adjustment to the idea that we were wrong is really, really hard.

    • We don’t have total control, particularly autonomic functions. I guess what I mean when I say control is that there’s usually an if-then thing. For instance, I have a dairy allergy. If I eat dairy, then I have an eczema flair, but if I don’t eat dairy, I feel better. If my back is hurting, I take an anti-inflammatory and see my chiropractor, and it feels better. Basically, I think what I’m trying to say is that generally when there’s a problem going on physically, I have control over finding relief. It’s not always 100% better, but it’s enough better that I can participate in my life. With the UC, I’m doing all the right things but not getting relief. It’s out of control. I’ve gotten out of fulminant severity I had when I was first diagnosed, but it’s been four months since then, and I’m still on the high moderate/severe end of the severity spectrum.

      I feel so helpless because I’m doing all the right things and not getting better. Some of it is old trauma stuff, but the present is pretty messy right now too.

      Sorry. Didn’t mean to write novel. I’m not even sure I’m all that coherent right now.

      • I suppose that makes sense. I guess I assume we’re all one blip away from the kind of thing you are dealing with–it’s pure luck that we aren’t. The degree of lacking control you are dealing does make a person feel helpless. Take care. My thoughts are with you.

      • Yeah, the one blip away thing is true. They don’t really know what causes UC, so there aren’t lifestyle changed you can make to lessen the risk of getting it. Stress can contribute to causing flare-ups, but you don’t get UC just because of chronic stress. Interestingly, tobacco/nicotine use decreases the risk of developing it, but it increases the risk of developing Crohn’s.

        Wow, I’m starting to sound like Wikipedia. Maybe it’s bedtime.

      • I do hope that there will be a way for you to have a decent quality of life again soon. Take care.

  2. Yes, talking about it is being brave. Reaching out for support is being brave. On a medical note, have you been checked for Celiac? Most of my in-laws have it, and until the last few years, Dr.s gave diagnosises like IBS, UC, stress, etc. The symptoms are the same. If your Dr hasn’t already checked Celiac off the list, it’s worth a shot. I hope you can find some relief!

    • Yeah, I was tested for celiac about two years ago. It was negative, but my doctor has me on a gluten-free diet anyway–apparently you can have gluten intolerance without celiac, has to do with IgG antibodies v. IgA antibodies.

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