I have gone from not having much of a life or career because of pain to not having much of a life because of my career and the pain and tiredness it causes after a hard day’s work. I am sure those of you who work with RA will know that work does take up pretty much all of your energy and strength, and doesn’t leave room for much else! Which is why it is so important to me that I do something I enjoy for work, if I am not going to get much of a social life after it! I don’t miss being sat at home, daydreaming about living a ‘normal’ life one bit. Waiting around for the day to ‘start’ when everyone comes back from their jobs when you have barely got going is not a nice feeling. It’s demeaning and makes you feel worthless, as I have said many times before. But I do know that work isn’t everything. You shouldn’t live to work, so people keep telling me, but where I am right now is where I have longed to be, something I have deep down always wanted, to feel important, valued and more than just the poor girl with RA.
I don’t intend to work until it kills me, don’t think I am that stupid. But I am just trying to get the balance right. At the moment, whilst I get used to having a job again, having responsibilities again, I am having to let people down on occasions. Friends and family have had to meet without me because by the time it gets round to doing something with them, I simply don’t have the physical or mental strength to a) hold a conversation, b) make the effort to look half decent to go out and c) drive (when my knees and ankles are fat and sore from being on my feet all day). I don’t expect everyone to get that, they might think that I am simply a bad friend or someone who lets people down continuously but I hope that if they are true friends they might try to comprehend the transition I am going through at the moment and that just because I am doing something normal again, like going to work, it does not mean I am cured.
On that note, isn’t it amazing how many people think that everything is perfectly alright again, that your RA has magically disappeared, because you are back to work? Do they think that the pain doesn’t wake you up in the night anymore? That the pain and stiffness is no longer there in the mornings? (In fact some days its’ worse now than before from working hard or doing too much the previous day) The fact is, RA doesn’t go away. It never goes away. It’s just that some days are better than others, and on the bad days time teaches you how to cope a little better. I am not complaining about the ‘you look well’ comments, or ‘look at you doing so well and feeling so much better these days!’ That’s great, but they don’t see the occasions I go home and pretty much collapse into tears as I have given the day everything I have got. I cry because of the pain and exhaustion and with pride that I managed to make it through the day without breaking down in front of people (especially my customers, they don’t want tears with their tea and cake!)
Sometimes I just miss being looked after a little bit. Perhaps going home to mum or someone knowing that they might just help you make tea, or do your washing as you’re having a bad day. But in my quest to remain independent, I must carry on with these other little jobs myself. (Some nights I don’t eat dinner, for simple lack of energy to be able to cook, or not being able to stand for too long as my legs hurt like hell).
Anyways, I am rambling. You get the idea. It’s too much sometimes, that’s all. Throw me a bone here.