I think that being diagnosed with a chronic, progressive, life long illness should come with some sort of warning. Yes, ok you can find out about all the treatments and the help and aids available but no one - NO ONE - told me that my whole life would be turned upside down by it. That everyone else alongside me would be at some point sucked in, trapped and spun around for a bit too. Nor that it would last for so long, or that when it finally calmed down it would leave a trail of utter devastation behind it. With the added complexity that it could and would return without warning, spiralling yet again out of control.
It’s terribly unfair that my little family has been damaged by RA. Even worse is that it has reached further than that, for those that let it pull them in that is. There are a few who hold on so tight and refuse to let it take them, I have to admit I am slightly envious of them. I didn’t know that having RA would affect so many people and for that I can only apologise. I don’t want to have it, I didn’t ask for it, neither do I have any control over it, so I guess that you’re either with me or you’re not...I don't have a choice.
When it’s you that's ill, in so much pain and in the dark as to what is wrong the emphasis is all on you as you search for answers and a diagnosis. The relief that diagnosis finally brings is enormous; at last you can begin to get better and get on with your life. When I was told I had Acute Inflammatory Poly Arthritis I thought, ‘well that doesn’t sound too bad, that’s ok I can cope with that’. It was only when I saw the Nurse about starting my medication that she told me that I had RA. I was completely shocked and spent the rest of my appointment in a daze. I heard what she was saying and nodded and agreed to things but the only thing that stuck in my head was “…you have to go through a grieving process and then you can begin to put your life back together”. What was she talking about? I’d have a few pills and I’d be fine. It wasn’t until I saw my GP and discussed RA in more detail that it finally sunk in and I broke down and cried for ‘me’.
So, that’s when it hit, this whirlwind. This violent, dangerous thing that had come and gone leaving nothing and no one untouched behind it. It has changed everything, forever. I had gone from just being ill to always being ill, for the rest of my life, for the rest of my children’s lives. Although I might get good days and weeks and months, I'd never be well. Fighting it is a slow and arduous task often with unforeseen setbacks. Two steps forward, one step back.
I battled on and on through that first RA year. I welcomed the Spring, Summer, Autumn of 2007. I was not going to let it get me again I’d got my life back! I could do everything and anything I wanted and I did. But I was tiring, along came a bad Winter and I was knocked right back down again. That was the first time I really appreciated the impact my RA had on other people. I began to rely on my neighbours and friends and family to do my stuff, my jobs, look after my children. My responsibilities were dealt out to others. I was giving away all my good cards, again.
It's unreasonable that so many people have to be involved in my battle but then without them I wouldn’t get any 'better'. Hurricane RA has so far visited us year after year after year. I wonder if others can see the pattern too?
This has been another difficult Winter and I am waiting for it to blow itself out…it is coming to an end I can feel it but it’s not quite done with us yet.