Today’s blog week prompt is this….

Managing RA fatigue – We all know that fatigue is a big part of many of our lives. How do you manage that fatigue? Perhaps you like a warm cup of tea or a hot bath. We all have our coping strategies. Describe anything you do to help with fatigue.

That seems like such a small question when in fact it’s ridiculously large, fatigue has been my own personal demon since way before diagnosis, it was the first sign I had that something was wrong, and it started this month last year.  My one year fatigue anniversary, whoop-whoop!

I need to be honest here and in the interests of ‘full disclosure’ (lol) start by saying that my GP is in the process of diagnosing me with ME/CFS, so my fatigue may be more excessive than RA fatigue alone. 

So, how do I manage fatigue? I’ve been told by doctors and rheumatologist’s that fatigue is the hardest symptom to treat.  It’s difficult to explain to anyone who hasn’t suffered with it exactly how debilitating it is.  The fatigue is the main reason I had to stop working in March, the joint pain and mobility were obviously big factors, but the fatigue was the final straw.

I could use a hundred analogies and none would suffice.  It’s like carrying a weight, walking through water, swimming against the tide, trying to move mountains. The closest I can come is that fatigue makes me feel heavy, too heavy to move or think or just stand up.  I don’t want to eat or drink or talk or write, everything seems to involve superhuman powers that I just don’t have. 

If I’m honest I’m not sure I do manage my fatigue, I’m not sure that’s even possible.  What I do is cope.  I am used to the very bad fatigue days now, I usually have two or three a week minimum, so I’m prepared.  I keep in things like cereal bars, bananas, grapes and bottled water, really easy stuff to keep me going, there is no chance of cooking! I’ve always been an avid reader, so I make sure I have books to hand, and I’ve just discovered the magic that is Netflix when one is unable to leave the sofa 🙂

I no longer worry about these days, I used to find them incredibly stressful, because I’d feel guilty, adults don’t just take pyjama days, that’s not productive!! Actually I’ve discovered it’s the most productive thing I can do.  I’ve learnt to listen to my body instead of years of conditioning to “push on through” or “not be lazy”. If I take these rest days when my fatigue flares up, I am a better and more relaxed person because of it.  It also gives me energy for later days when I can function, rather than never having a minute when I’m not exhausted. 

I realise this is not considered ‘normal’, but it has become mine and I’m learning to live with it.  So if you catch me in my pyjamas at 4pm, believe me I’m not being lazy, I’m giving myself the best self care that I can.