How many hours are in your day?

November 4, 2011

People say that we all have the same number of hours in a day, but I beg to differ.

These days, I can’t seem to get through the afternoon without needing to rest for a while or nap.  Even after I wake up, I’m not very productive.  I have been on a leave of absence from work for several weeks now.  I thought that by now I’d have cleaned up my apartment and caught up on email, but somehow, that doesn’t seem to happen.

Fatigue is a difficult thing to describe if you’ve never experienced it.  Even now, I know that I’m lucky, because I know that there are many people with much more severe fatigue than what I have.  Some sleep for 12 or 15 hours a day.  How do you accomplish anything at that point?  I don’t know, but I know it must be similar to what I have now in one way: you have no choice, so you find a way.

This is frustrating.  I want so badly to use all of my waking hours productively, but that’s just not an option right now.  The thing about fatigue is that extra sleep or more rest won’t fix it.  Exercise won’t fix it either.  It’s infuriating but true.

So now another day is over and I’ve accomplished much less than I wanted to, and that will have to be ok because I have no choice.  I’m angry and frustrated, but I can’t do anything about it.  I can hope that tomorrow will be better, but I just don’t know.

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Projecting a “healthy” image

November 2, 2011

A few days ago I wrote this post for Chronic Babe’s carnival on Behind the Mask.  I’ve been thinking about it ever since.  Are there other masks I wear that I’m not aware of?

I went to the gym today.  This was a huge accomplishment.  I haven’t been to the gym in ages, and the last few times I went, I felt horrible afterwards.  Now I’m not working, and I’m on new meds, and I did a minimal workout, so I’m hoping to feel ok.  Still, it was weird being there with masks on my mind.

One reason I go to this particular gym is that no one seems to be judging anyone else.  We all just do our own thing.  No one needs to feel bad about choosing the small weights, or for only doing the treadmill.  Of course, that doesn’t stop me from feeling awkward anyway.  I only did 7  minutes on the bike.  Now, a few years ago I couldn’t even do that much, so this was huge for me.  But what did other people think?  The person on the next bike had clearly been there for a while, and was still there when I left.  Did she think it was strange?  What about the 3 minutes on the elliptical machine?  Again, for me this is a lot, but to others it must have looked weird.  What were they thinking?

The funny thing is, I really don’t care what people think of me.  The reason I wondered was that I was curious how I was projecting.  I’m so used to hiding my illness, and then when I can’t do something, I’m never sure if people think it’s because there’s something wrong with me or if they chalk it up to some so-called-normal trait, like laziness.  I didn’t know anyone at that gym and I’ll probably never see them again.  I don’t care if they thought I was weak or lazy or whatever.  But I do care about controlling how they see me.  I can’t control much with my illnesses.  I can’t control how I feel, or sometimes how I look, and even sometimes how I act.  If I can project the image that I want, though, that’s the ultimate control.

So I’m back to the question from my earlier post: is it worth it?

Answer: I don’t know.  I’m guessing that some days it is and some days it isn’t, but overall, I just don’t know.  Is it worth it for you?

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Setting chronic illness goals

October 24, 2011

What’s your CI goal?

We all have different goals, of course.  There are the big picture goals, the ones that shape our lives.  For me, that’s spending time with family and friends, dating, keeping a full time job, and taking care of myself while living alone.  Some of these are easier than others at different times.  Sometimes these feel impossible.  But so far, they’re all doable.  Ok, maybe I can’t do them all simultaneously, but I’m working on it.

And then there are the illness-related goals that focus on the symptoms.  For me, that’s reducing the pain, finding ways to better relieve the pain when it hits, reducing fatigue, and removing weakness.  I suppose I’ve had these goals for so long that I’ve just taken them for granted.

Over the weekend I was talking with a friend who suffers from severe chronic pain.  She’s been using a form of exercise to try to ease the pain.  She told me that it started to work better when she stopped using it to get rid of the pain and instead thought of it as a way to reduce the pain.  I was shocked!  It never occurred to me that she was trying to get rid of the pain completely.  I guess it wouldn’t have mattered – I couldn’t have talked her into anything different because she wasn’t ready for it yet.  Still, I forgot what it was like to have hope that despite everything, it might one day go away.  I stopped thinking that way many years ago.

I’m happy for my friend that she has this new outlook.  Now, any reduction in pain is a success.  Maybe it will go away completely one day, maybe it won’t, but for now, she won’t feel like she’s failing at “curing” her symptoms.

I learned a long time ago that my pain would never go away.  It took a long time to accept that reality.  And then it went stopped!  I still have pain, but it used to be 24/7, and now it’s only on and off throughout any given day.  Some days I can almost ignore it completely.  This huge, amazing, unbelievable!  So I’m keeping an open mind and I know that anything is possible.  Still, my goal isn’t to get rid of any of my symptoms (except the weakness, which is almost definitely temporary.)  If I just focus on reducing them, then maybe they’ll go away and maybe not, but at least I could get to a point where they were liveable.  If I can live with them and still meet my big picture goals, then that’s good enough for me.  Hell, forget “good enough,” I’d be dancing in the streets with joy.

What about you?  What are your goals?  I’d love to know.  Make a comment below or send me an email.

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Understanding drugs

October 20, 2011

A friend was trying to comfort me.  She suggested that maybe there would be a new drug treatment soon.  I said there wouldn’t be because, well, there won’t be.

The process is slow.  If a scientist comes across some great discovery today, it will be many years before it is a drug that I could take.  And of course, even then, my doctor may not want to prescribe it or my insurance may not cover it.  But first there needs to be a drug that could help, and there just aren’t very many of those.

It was reassuring to see this article in the newspaper the other day.  Sometimes, like with penicillin, there are fortuitous accidents.  I don’t know about you, but I really don’t want to wait around and hope that someone gets lucky.  A lot of medications are used off-label, meaning they were developed to treat one thing, and ended up working well for something else (think: Viagra.)  And then there are the meds that are being used as they were designed.  I suppose I could do some research to figure out how many of these exist now, but I’m too tired or too lazy or maybe both.  The point is, there are a lot of medications that are not being used as they were designed.  That’s ok, but wouldn’t it be nice if it didn’t have to happen that way, because drug interactions were so well understood that scientists could design medications to treat any condition they chose?

That’s the dream.  Reading this article, it’s good to see that some people are pursuing this approach, and I sincerely hope they can make it work, and soon.  Now I know that doesn’t mean I’d get a drug that would help my conditions specifically.  I’m sure these methods would be used to treat more common illnesses first.  Still, after they treat cancer and AIDS and so many others, maybe, one day, they’ll get around to mine.

There are limited resources, and time continues to alternately crawl and fly by, but it’s encouraging to see progress like this.  Throwing money at research isn’t enough.  Politicians and argue forever about how to allocate funds.  At the end of the day, though, it’s about being smart.  Think about how much farther the dollars would go with greater understanding of the human body.  Think about what could be achieved!

 

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