Exhaustion Takes Over

I tried to do stuff two days in a row this weekend, which was not my best plan ever.  Saturday was a strategy session with some of our convention delegates, and I thought that was no big deal since most of it was sitting around.  So I said I’d come out and canvass this afternoon.

I did okay for about the first hour and a half.  It was hot, and the meds I’m on make me very photosensitive.  (I think it’s the Entocort, but it might be the 6-MP.  Who can keep track?)  Then I started feeling really weak and a little lightheaded.  I’d been drinking plenty of water, so I don’t think it was dehydration.  I just felt like I was about to collapse, like my body was just going to give out on me.  I was only able to finish about half of my canvass packet.  I feel guilty because I’ve been so unable to do anything lately.

Now I’m home, and I’ve got this pounding headache that will not go away.  I’ve taken Tylenol, but it isn’t doing a thing.  I have a stack of canvass and phone bank packets two inches thick that I need to enter, preferably tonight.  I have no energy, and I nearly pass out every time I stand up.  I don’t understand why my body is doing this.  I’m drinking plenty, I’m eating enough…so what’s the deal.  When I was active with my eating disorder, it made sense for this to happen, but now?  I’m only going to the bathroom between 6 and 10 times a day, and in the grand scheme of things, that’s not bad.  And most of the time there’s no blood, not since they put me back on the Entocort.

I kind of suspect it’s the 6-MP that’s causing the fatigue and weakness, or at least part of this.  I didn’t have this particular problem before I started taking it.  But it’s the only thing that’s put me anywhere near remission, so I don’t want to stop taking it.  Then I’ll get sicker.  But what am I supposed to do?  My GI doc has run every test under the sun to see why I’m so fatigued.  Iron, B-complex vitamins, Vitamin D levels–all normal.  There’s no obvious cause.  Even my psychiatrist has run tests, expensive functional medicine tests that I couldn’t really afford but paid for in the hope of finding something that could be fixed.  But nothing there, either.

And now I can barely leave my bed.  I had to buy a cane so that I can walk around.  I can’t function like this!  I mean, in three weeks, I’m supposed to be a teller whip for my senate district at the state Democratic convention!  It’s going to be all day, and I’m going to have to be running around: collecting numbers, collating data, communicating with the Senate District Whip and Deputy Whip, communicating with my local whips, communicating with my delegates, persuading other delegates…and I’m not even sure I’ll be able to stand up.

I’m just so sick of this.  I’m 27 years old, for god’s sake, and I’m pretty sure my 84-year-old grandmother has more energy and functions better than me.  I did not sign up for this.



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11 responses to “Exhaustion Takes Over

  1. On the positive, you did get SOME campaigning stuff done, even if you didn’t do every single last thing you wanted. I wish I had some great, earth-shattering advice for you on the feeling fatigued front. When I was very depressed, my doctor put me on Ritalin three times a day to “jumpstart” me and keep my thoughts clear. I also have a friend who takes Ritalin for the same no-energy, foggy feelings, and she has a type of chronic fatigue and fibromyalgia. Maybe something you could suggest to your UC doctor?

    • I actually have a prescription for Adderall, but I only take it occasionally because it makes me crash afterward, even at a low dose.

  2. kat

    i wish i could help in some way, but i can’t. and i’m so so sorry for all you are going through, and i hope you find a med that helps you into remission, and that you can keep doing all the things that you love, things that make you feel you have purpose and drive to do.

  3. Exhaustion is horrible! Hugs!

  4. Finding that balance is hard and takes time and then it may well change. But your attitude equips you well. Good luck!
    warmly, Marcy Westerling

  5. I’m really sorry to hear it, it’s a horrible place to be in x

  6. I know that exhausted feeling, I am sending a hug your way. It sucks to be ill…I am sorry that the UC cant be just cured! Will it ever be cured? XXX

  7. CCFA (Crohn’s and Colitis Foundation of America) says that total colectomy is a cure, but I find that logic troubling. Yes, technically it cures colitis, since you no longer have a colon–but that’s like saying chopping off your finger cures a hangnail. Ostomies can create their own problems. Plus, colectomy doesn’t cure the underlying autoimmune dysfunction. I know a number of UC patients who had J-pouch surgeries and ended up with autoimmune pouchitis, which has the same symptoms as UC.

    It’s just one of the issues I have with CCFA. I think they’re well-intentioned, but, you know, the road to hell, etc.

    • I dont blame you. I would not want anything where a bag or something had to be worn. I almost faced that last year when I had to have our ovaries removed. The surgeon said it might cause irreversable bowel issues and we may have to have a stoma or something fitted. I was so anxious. Luckily it did not cause those issues for us and things worked out fine, except for a wound that refused to heal for months on end. XX

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