But there lies the crux of the matter. When I am that bad I'm lucky to be able to move around the house let alone to get out, even with a wheelchair. Today I was in so much pain that I couldn't even face getting up to the doctors. Sounds daft right being too ill to go to the person who is supposed to help you get better. But when your whole body is whracked with pain and you're feeling pretty delirious with it you're going nowhere. However on those days that we can get out and maybe socialise Bernhard again says 'if they see you doing anything "normal" they assume we're 100% well.' They can not fathom that we 'came from the bed and will collapse on it after,' even after something as simple to them as going out for coffee. It is as though we are expected to be either on or off, sick or not, okay or not okay. You are out so therefore you must be better. Many a time I have heard those phrases Bernhard references 'hit the gym' and 'stay in shape' and I have reacted poorly. But can you blame me? They knew full well that I was no slacker and was obsessed with working. Obviously now personally using a wheelchair does dispel that myth somewhat but there have been plenty of times where people have thought me better, even when they know I use a wheelchair.
They can little understand the consistency of a chronic illness, how it never really goes away. How it dominates everything. It is not like having a cold, then recovering and then catching another. You have it ALL THE TIME. It just varies in its severity, like the volume button on a stereo, it can increase and it can decrease but often it's not you controlling the dial. As much as it pains me to say it ME is at the centre of my world, everything revolves around it. It has to in order for me to try and tackle it. But that is not to say that I give in to ME. I do not want my friends and family to only think about ME when the think about me. There is a person behind all this pain and fatigue. A person that still wants to love and laugh and care as much as she did before. I want to socialise, and spend lots of time with my family. I want to enjoy meeting new people and learning new things. I want to enjoy seeing my nephews grow up, even though they cannot rugby tackle me anymore. I may not be able to be there physically as much as I would like but know that I will listen and do what I can, when I can. Do not stay away because I have enough to deal with. Yes I definitely do. But I don't want to be defined by my illness. It just may have to be when I am not having an all out flare.
Yesterday I was in all mighty pain even after my painkillers and usual extra methods (heat, electrolyte drink, massage) so in a bid to distract myself I asked my Mum to take me out. Oh bleep bleep bleep it was painful but to the outside world, maybe even to my Mum at times I'm sure this wouldn't have come across. Yes again I was in my wheelchair but I was trying my best to just appear okay. To not give in to the pain that was gripping my body and turning my stomach. I had found myself trying to 'get on with it'. Maybe a small part of me had thought "well, this is what life is going to be like" and to literally grin and bare it. To not let on how much pain I was in, feeling miserable and guilty and dragging other people down with me too. I'm sure they've had enough of me whingeing about how much pain I am in. But trying to not show the extent of your pain for a few days is tough. Trying to keep it at the back of your mind when your body is fatigued and you can do little to distract yourself is nigh on impossible. Today I have been in a great deal of pain (I'm writing this at 3am oops, so maybe I mean yesterday). To the point where it took me ages just to get my phone from the side of my bed to text for help. The amount of times I had deliriously wondered why I was trying to use my hand as a keypad is beyond me. There was no question of grinning and bareing it. Then again, I did not brake down in floods of tears either as I have felt like doing. I simply did not have the energy to. The pain had my eye balls rolling and my concentration non existent. Everything was just pain.
Life with an invisible illness is tough for both sufferers and their carers. It's hard to know what to do. Do you go out and try to grasp some kind of normalcy? Or stay at home and be 'ill'. I guess the answer lies in the balance. Do what you can when you can. Surround yourself with people that understand when you are lying ill in bed or out having a coffee. Sometimes we do have it both ways but usually our lows outweigh our highs and those lows can certainly make us appreciate the highs all the more.