Friday, 8 June 2012

Come Aboard The Yacht of Life

So here we go again. Tomorrow I face the daunting task of sitting in a chair for around 8 hours whilst I’m pumped full of drugs and poked at. Yep you guessed it, its Rituximab infusion number 5. I cannot say I am looking forward to it, did you guess? This time especially because of work. I didn’t have to worry so much about side effects when I had treatment previously because it didn’t matter if I felt like crap for a couple of days or weeks even. I had nothing to do anyway. This time it’s different. I have a job to do, a business to run, so feeling horrendous and having time off isn’t an option. I have allowed myself two days to recover(ish) as realistically I know I won’t be able to get up the day after an 8 hour infusion and do a full day on my feet... it just isn’t going to happen (and that ‘s not being negative, just sensible). On my second day off, I do need to get into some sort of gear and do bits of work from home and fetch supplies etc so it won’t leave much time for lounging around.  I am sure that other people do just fine... right? I know I wasn’t quite right for a while after my last infusion but I can’t say how I will feel returning to work because I’ve never had to do it before.
Anyway, the thought of it scares me a bit. Because I have put myself in the situation where I have to be ok. As you all know, the unpredictability of RA means you can never say anything for sure when it comes to how you will feel. It’s really frustrating trying to be prepared for something that you can’t predict. I still have sleepless nights where I imagine waking up and not being able to move for pain. The fear of not being able to walk as I try and get out of bed still haunts me, because I know that it could happen at any time... and there’s not a hell of a lot I can do about it. Living with RA is like one big wait and see game. You wish for a good day when you have made plans, but inevitably have a bad one and then good days can often turn into bad ones... etc etc.
So, back to the point... I just wish I could foresee how things will go, as I am sure we all do in some way (if you have RA or not). Not being able to tell the future is a part of life, it’s the same for everyone (unless you have magical powers, in which case please apply within). But for some people seeing into the future means different things. Some may wish to know if they will get the job they long for, get the girl of their dreams or even just be happy. But for me, the future is only tomorrow. Thinking any further than that seems near impossible because I just don’t know what this disease will mean for me in the next few hours, let alone years. This obviously makes work very hard, and in a business where I have to plan ahead, all I can hope for is that with enough help I will get through whatever I need to do. I worry I will push myself too far now I am working again, that I will use the excuse of having good days to do as much as possible in fear of bad days to come. But, inevitably doing too much brings about bad days anyway. Sounds confusing doesn’t it? If you are not living with RA but reading this because of someone you know who suffers with it or other chronic disease, I bet you didn’t realise the sheer volume of things we have to consider on a daily basis such as this.
My mind is a whirlwind of anticipation, eagerness to get things done whilst I am well, trepidation and sorrow for the things I haven’t and couldn’t have done since being diagnosed. I am more positive about the future now, don’t get me wrong, but I can’t help but dread being taken back to that dark place where I am not in control of my disease again.
Getting used to living a ‘normal’ life is taking its toll at the moment. When I say normal, I mean being back in the routine of day time work. I am putting every ounce of myself into it, not leaving room for much else in the way of a social life. But I knew that was the choice I had to make, because whether I started my own business or not, any job would have exhausted me and it’s better to be exhausted doing something you enjoy and love than just for the sake of it. Some days I do long for when I had no responsibilities which made bad days a little easier. But then I remember the emptiness of my life without purpose. The boredom and depression that came with those long, unfilled days was exhausting in itself. At least when I lie down to sleep at night, after a long day, I feel a sense of achievement and pride now. I try to ensure I still make the effort to do things outside of work too, and that will hopefully be more enjoyable now I have someone a little bit special to share it with (more details on this soon). I guess it’s all about balance between work, rest and play. When I have worked out this formula, specific to RA sufferers, I will let you know, from aboard my yacht...  as I will undoubtedly be a millionaire who has cracked the formula to a happy and healthy life for everyone.