Refusing to be Beaten!

I’ve not written a blog entry for quite some time now, to be honest, I get a bit bored of talking about the problems that having Auto-immune Arthritis and Fibromyalgia causes and can’t honestly see why anyone else would want to hear about them either. So why am I writing one now? Well, I’ve had the shittiest few weeks and despite trying to cope and keep it all contained, I’ve been struggling to do that and letting it all go helps, whether it’s here or in person over a cuppa, it helps.

So what’s been going on? After a period of a few months free from significant pain and fatigue, I contracted some kind of virus which made me ill on and off for a few weeks and, even though it’s now gone (I think), it’s left its legacy! My immune system obviously thinks that there’s still something foreign in my body and as a result, it’s been attacking my joints, soft tissue and connective tissue as well as my organs too.

For the last few weeks I’ve really been struggling to do even the simple things – taking a shower, doing the washing, it’s taken all my energy to do things like cook the dinner or put the hoover round. And not being able to just do the simple, everyday things without launching some sort of tactical assault, has a really negative effect on me psychologically after a while. The odd bad day, or even a bad week I can cope with, I’m quite resilient, I’ve had to be – I’ve had this challenge for the whole of my adult life and so if I want to live a relatively normal life, I have to fight it and make sure I win more often than I lose. But when it goes on for weeks and weeks it gradually, eventually grinds me down. I’ve had to cancel plans to see friends and I’ve not been able to get out for walks as much as I usually do (the weather definitely isn’t helping either) and that’s really pissed me off.

So what’s it like when it’s bad - physically, mentally and emotionally?  Physically – I have shooting pains throughout my body, they occur anywhere and everywhere at any time without any kind of build up or warning, they can literally stop me in my tracks. It feels as though someone is stabbing me with a sharp, hot knife deep within the tissues of my body. It hurts, a lot. And then there’s the pain and stiffness in my joints, again it can be anywhere or everywhere for no particular reason. Or it can be as a result of some sort of physical activity, even something simple like cleaning or hanging out the washing can result in stiff, painful joints. My muscles feel like they’re burning and my body feels like lead. And then there’s the fatigue, a feeling of complete exhaustion and lack of energy, which isn’t always the result of any physical activity, it just happens, some days I wake up feeling like this and cry, because I know how much it’s going to take out of me just to get through the day. I can be out for a walk or in the middle of doing something and without warning, my energy drains away and I’m left feeling completely exhausted. Not just ‘I’ve done too much’ tired, I mean absolutely knackered, completely weighed down with concrete, run a marathon type exhausted. I can’t begin to explain how frustrating that is.

Mentally, I know I have to stay strong, I have to hang on to the positives when things are bad, and I have to keep myself motivated and push myself to do things because I know that, psychologically, I’ll feel better if I do – it really is a case of mind over matter, a real battle between my mind and my body. But when this battle goes on for more than a few days, it can start to wear me down. When it goes on for weeks, I can find myself getting really, really low despite my best efforts to keep fighting. I sometimes have to cancel plans or tell the kids I can’t ferry them around or do the things I want to do with them, because I’m in too much pain or am totally fatigued. When this happens, my perspective is altered and I start to feel useless, pathetic, a failure, inadequate – I feel beaten and so far from ‘myself’ that it’s really hard to find a way back to ‘me’. I don’t want people to see what I can’t do, I want them to see how much I can do, how often I battle and win, how strong I can be and how much I achieve despite Arthur and Fibro hanging onto my ankles (metaphorically speaking). I really hate not being able to just do what I want to.

So you see, it’s not just a physical battle, it’s a mental and emotional one too. Most days I win, but some days I feel like I’ve lost and when that happens, it feels shit…really, really shit. I cry, a lot, with pain and frustration. I do most of that crying on my own because I don’t want others to see me not coping, but that can leave me feeling isolated and very alone.

And yes, I know how lucky I am – I have a loving, supportive family, I don’t have a life threatening disease, I have a lovely home, I have a job. But sometimes, on the really bad days, none of those things make a difference; when I hit the bottom, there’s only one thing that can really help – my own desire to be ‘me’, to live a full and happy life. I refuse to give in, I refuse to feel sorry for myself, I refuse to let down the people who reply on me and I absolutely, categorically refuse to let Auto-immune Arthritis and Fibromyalgia turn me into someone I’m not .

I refuse to be beaten.