Wednesday, April 22, 2009

Extreme Fatigue

Just when I think my fatigue/exhaustion can't get any worse, it does.

It's been a killer couple weeks, and this week is just piling it on.

I just can't seem to cope with having something that needs doing and somewhere that needs being on a daily basis. I'm getting desperate for a full day of downtime, although it's bad enough that I suspect a single day of downtime isn't going to cut it.

Yeah, I guess this is turning out to be a "Poor Aviva" post again. Sorry. But if I don't whine here, where can I whine? :)

I think April 9 is the last day I was able to just veg at home alone, and that was trying desperately to recover from not getting home from seder until 10:30 p.m. the night before. Since then, it seems like it's been one commitment after another, mostly doctor appointments but also some social and volunteer commitments.

So the really weird part? It's getting harder to sleep instead of easier as I get farther and farther past exhaustion. I'm walking around like a zombie, but it's challenging to actually fall asleep when I have the opportunity, and I'm waking up earlier than I'd like and not being able to fall back asleep again.

Don't get me wrong -- I'm still getting 10-11 hours of sleep a day, and I have plenty of friends with young children who would be thrilled to get 8 hours. But since I got sick, I've needed to average closer to 13 or 14 hours a day to feel even semi-functional. And let me tell you, I'm not feeling very functional these days, although I'm going through the motions as best I can.

I'm craving caffeine in a way I haven't in years. (I gave up caffeine when I had chronic peptic ulcers in 2000-04.) And boy do I wish I could still take the Provigil for an energy boost.

I figure if I can just get through the next six days or so, I can crawl into bed and not come out until the following weekend.

In the meantime, I've got those iron infusions Thursday, Friday and Monday. I sure hope they kick in over the next few weeks so I can believe it was worth the time, effort and energy to get them. And money. I don't know yet what they're going to cost us out-of-pocket, but I know they'll cost something.

Thanks for listening, folks. And if you wondered why I have owed you email for weeks now, well, this is my excuse.


opalmirror said...

Feeling crestfallen and sad you feel so terribly exhausted.

SRR said...

I am so sorry that you are so exhausted!!!!!! I hope you are able to find ways to get more down time. Please don't compare yourself to others who would be happy with 8 hours sleep. You need more. You are sick.

I spent over a year with extreme fatigue - sleeping full nights sleep with 2-3 hr naps and still feeling exhausted. And yes, I would have trouble falling asleep too. I was so fortunate not to be working outside the home. I stopped all my volunteer work - just said no to everything. I stopped socializing. I stopped going to church. I did the absolute minimal around the house. I still feel sad about how little of their mother my kids got.

Its awful and frustrating isn't it? And sad. And boring. But don't beat yourself up. It isn't a strenght of character thing, it is a physical reality.

I assume you've had your thyroid checked. That was a major part of my fatigue (although not all). Although it was within official "normal" range (TSH of 4.8) I couldn't function. For me I don't feel normal unless it is close to 1.

I know you have major other things that are causing your fatigue, but I just wanted to mention it.

Very best wishes that you and your doctors can figure out what is going on.

Nico Blue said...

I so know how you feel. I could have written that entry myself. My husband and the grandparents try to help by taking the kids out for a bit but what my body needs is a week (or sometimes I think even a month or more) to let my mind and body run at it's own pace. I'm very thankful for having the help but my fatigue only gets a little bit better for a short time regardless of how long I rest. I go to bed tired and wake up tired.

I have hope that one day they'll find a drug that works better on day soon I hope.

Take Care and try to rest when you need to!