Monday, 21 September 2015

#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...!
 

8 comments:

  1. I think one of the most frustrating things about fatigue is that the whole time your sitting on the couch trying to recuperate, all you can thing of is the many things that need to be done around the house. Sometimes that itself adds to the exhaustion.

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    1. I've had to tell myself that there's nothing to be gained by stressing what I've not managed to do - most of it will still be there when I next get up off the couch! My partner is a bit of a neat freak, and I know he finds it difficult sometimes to get home and find me still in a mess...but he's coming to understand that sometimes I just can't - and that's not a bad thing, really. We live in a home, after all, not a display house! It's not always going to look perfect...

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  2. I think the worst part of fatigue is I never seem to overcome it. I try, I really do. But well like my uncle, it tends to hang around, seemingly without rhyme or reason. I love your post today, Kaz. You are an amazing writer.

    rick

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    1. Yep - hamster in a wheel stuff, you just never get anywhere with it... I used to get very stressed about it, and I'd beat up on myself. Just no point in doing that though - it's not useful. As I commented on Arthritic Chick's post on this topic, my first rheumatologist diagnosed me with a secondary chronic condition: Chronic Stubborn Pigheadedness... I forgot about that when I was writing this post... He told me at the time that, given the RA diagnosis, it was going to be useful. He was right - but I have to be mindful not to push it these days...in the early days, before the wheels feel off and the disease got severe, I could get away with pushing through much more than I can these days.
      Thanks Nick - I do love writing, and the blogs give me an opportunity to write for myself without having to fit anyone else's brief.

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  3. Great post. I agree, you finally climb into bed (which feels amazing) only to sleep but wake up exhausted. I'm where you were..working full-time, consuming WAY too much caffeine that seems to keep me from passing out at my desk but not wake me up enough to fully function.

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    1. Oh I DO remember those days. I really don't miss is that constant struggle to stay alert and focused for a working day! And meetings...oy!! One thing I did find that helped a little bit was to make sure I got out at lunchtime. My office was near one of Sydney's big parks, and on fine days, taking my lunch and sitting on a bench in the fresh air was certainly better than staying at my desk. I don't know if that's an option for you, but if it is, give it a go - it helped kick start my afternoon. The boys at our coffee cart got to know that if they saw me in the afternoon I was having a tough day though!
      All the best to you.

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  4. Working freelance was my saviour too - I discovered the travel to work actually triggered my lupusy symptoms because of the sunlight exposure - travelling east right into the morning son. Staying home solved that and allowed me to manage my household at the same time at my own pace.

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    1. Ideally, I'd like more work, but then I'd be struggling to do things like this blog week challenge! So, meh...can't complain. I do enjoy the flexibility and the variety that freelancing bring. I certainly don't miss the office politics either! And I can pace myself with both work and household things, so it works well for me too.

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