#RABlog Week: Post No.2 When tired isn't just tired...

Today's prompt:
Managing RA fatigue. We all know that fatigue is a bit part of many of our lives. How do you manage that fatigue?

There's a semi-regular questionnaire that pops up in the online support group I belong to: Which is worse, RA pain, or the fatigue? It's always interesting to read through the thread as it develops, and nearly always, more people say the fatigue is worse than the pain. I'm one of those people. The pain is something that can be medicated. I can fight through it if I have to. The fatigue though...that's a whole other beast. 

It's difficult to explain to someone who doesn't experience it. I hear people - well people - say how fatigued they are sometimes. That's completely understandable, given the crazy busy lives some of my friends have. But, that fatigue will go away once they get through whatever's going on for them, and have a chance to rest and recuperate. Rest and recuperation doesn't get rid of RA fatigue... Trying to fight through it - and I'm a stubborn type, so do keep trying to do this - is well nigh impossible. 

While I was still working, it was a daily battle, fueled by way too much coffee, so that the end of the day would see me jittery with the caffeine overload but barely able to put one foot in front of the other to get to my train and home again. It was a horrible time. 

These days, I freelance. That makes life so much simpler. The fatigue is still there - nasty beast that it is, it rarely goes away. Even on a better pain day, the blasted fatigue is still there like a permanent bad penny... Having a bad fatigue day when you work from home isn't such an issue as it is when you have to get someplace else to work. My clients don't know I'm doing their work in my PJs...and they don't have to know either. Turning up to the office in oversized argyle printed flannel PJ pants and an ancient Abercrombie and Fitch T-shirt of my partners would have been a definite no no! My kids used to have pyjama days at school, for fundraising, but it would not have gone down very well at work...
 
When it's really bad, I have to stop. Mostly, I park on the sunroom couch drinking mugs of tea with lots of sugar (I tell myself I need it for energy...) and read. The cats come and go. My partner's office (he works from home too) is off the sunroom, so we can chat between things... At some point, he'll haul me up and take me out for coffee and we'll sit on a bench at our local beach and enjoy the fresh air. He says I CAN'T be on the couch all day - and he's right. I get stir crazy and grumpy when the RA feels like it's winning. 

When I flare though, the fatigue takes itself to whole new levels - every movement feels like I'm weighted down, and the tiniest effort can feel completely impossible. Those days, I move to the living room couch and pack myself in with lots of cushions and a blanket and watch lots of DVDs. The cats usually move in those days - long term blanketed lap...that's their idea of heaven! I don't have the focus to keep reading on those days - that's how I know it's really bad, because usually I can read through just about anything. 

The very worst thing about RA fatigue - for me - is that I crawl into bed each night, beside myself with exhaustion sometimes, and have whatever kind of sleep I might achieve on any given night (and that's far from consistent) and the next morning, it's like I've not had any sleep at all. There's no sense of feeling rested, even when I have managed to clock up some reasonable hours of actual sleep. I think that's probably the hardest thing to live with fatigue-wise. There really isn't anything that fixes it. I honestly feel better on the days I've pushed myself to the point that I'm in a lot of pain and exhausted from that, because then at least I've done something and there's a logical reason for feeling crappy. Getting to the end of a day when the fatigue is so bad that I've not managed to achieve anything is soul destroying. 

I do try and get out each day - even if it's just the walk down the few blocks from home to our local shops where there's a wicked Greek bakery. I take a book, and sit for half an hour over a coffee and cookies and then walk back. If that's the only thing I can manage that day, so be it. I can't give into it though - because then the disease wins, and I'm not going to have that. On the better days, I get out and do a proper walk, get shopping done, visit a friend, whatever - as long as it's something that helps me feel more normal and not sick. Because I won't be that sick girl...!