Stuck between a rock and a hard place

I don’t know if I have talked about fatigue before, I’m sure I’ve mentioned it, but fatigue for me is a big part of my disease, and has a profound affect on me. Many people with autoimmune arthritis, autoimmune diseases or chronic  illness in general suffer with fatigue to some degree. For me my fatigue is often the worst when my disease is most active, but it changes from day to day, and even a cold can set it off.

I think that fatigue is one aspect of this illness that is the hardest to deal with, and which is really misunderstood by the general public at last. Fatigue can be just as debilitating as my joint pain, and systemic symptoms sometimes even more, as I can often push through the pain, but find it very difficult to push through fatigue, and often hit the wall if I do.

To give you an example, I remember this one day while I was still at boarding school, shortly after I had been diagnosed. It was a Sunday, and I woke up at 10 to go to brunch with my friends. By 1pm I was back in bed, sound a sleep, as I was just too exhausted to do anything else, even thinking, sitting, watching everyone else interacting was too much. I slept until 7pm, when my roommate woke me up, wanting to know if I was alright, and wanted to go to dinner. I did want to go, but knew it was too much energy to get there. So instead I showered and attended my house meeting (which we had every Sunday, and which everyone had to attend), after which, at just 9pm went back to sleep. That day I slept for 19 out of the 24 hours. And let me tell you getting through the other 5 was hard. It was hard to keep my eyes open, it was hard to concentrate, hard to think, hard to want to do anything else but go to sleep.

This is the hard truth that a lot of people don’t know. Fatigue isn’t just being tired, it is not something that is easy to push through, it is often something that you have to wait out, give into, and I hate giving in, but you can only struggle against it so much. Fatigue fights back. Fatigue is soul sucking. It’s like being a zombie, and no amount of sleep makes it better. Even after my pretty much day long sleep I was still just as exhausted as I had been waking up. It’s a horrible feeling.

But right now I am dealing with something that I am finding even harder than the claws of deep fatigue. At the moment I have fatigue, but it’s not as bad as it once was, thanks to my Remicade infusions. The thing is I have enough energy to be bored, and constantly thinking of things I want to do, but don’t quite have enough energy to do these things. I am just hoping that my infusions will kick in a bit more, and just give my energy levels that little push that they need. Then maybe I could get around to backing the cake that I have been meaning to do all week.



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