So how was your day?

So, how was your day?


I only ask the question because most people simply cannot imagine how something like RA (or indeed, other inflammatory arthritis conditions) cause so much disruption to a person. I'm not talking about the pain levels (that's a completely different story), but the day to day stuff we all take for granted.

When I was first diagnosed I have to admit it was a relief. I knew something was wrong, and had been fighting some doctors for years, who despite seeing some inflammation levels in my bloods, just put it down to effectively being in my mind on my part. I then moved, and the new doctor listened, only the second GP who actually did that. The first, was excellent, don't get me wrong, and also fully agreed I had a problem. But she couldn't get a specialist to make a decision. Not fully. So I was feeling nervous when I was booked in to see a new specialist in a completely different area.
I could hardly believe when they said almost without thought, "You have inflammatory arthritis of some kind. We'll begin treatment straight away." So, here I was, finally, with something concrete.
But, and despite all my medications, I have a disease that is unlikely to ever go away (unless treatments do enough to manage that). It means each waking minute is now spent having to listen to my body, so I know what I can and can't do.


Quite simply, once I was aware of my condition, my world entered a tailspin (and as someone who launched Gliders for a living *Sailplanes for those of you in the US* I know how disorientating a tailspin is). It wasn't a good time for me. Its the biggest things that you begin to lose first. I can no longer pick up my acoustic guitar and play. I can no longer walk the dogs across 4 to 6 miles of hillside every day. I can no longer sit and read a book for long, as holding one is too painful. I can no longer sit at the computer for long as I try to enjoy the web and graphic design stuff I've done for fun. I can no longer hold an SLR camera (digital or otherwise) to take photographs. I can no longer use a chainsaw, strip down an engine and rebuild it, plaster a wall - to name just some of what I've lost.


Then you begin to notice the smaller things being lost. Struggling to pop some pills out of a packet. Struggling to get in and out of a bath. Struggling to even change gear in the car. Struggling to just lie in a comfortable position in bed, feeling as if your on concrete. Holding a mug of coffee can become a challenge (I always ask for a takeaway cup if at a coffee shop because I can grasp that easier than a handle). I even have to think about the sun before I go outside, as my med's make my skin more prone to burning. Each minute, each action has to be thought about.


And then there is the "I'm going to sneak up behind you and surprise you." little shit of a loss. I often find these the worse, because they quite literally come out of nowhere, whereas the other losses, you notice gradually over time. But the sneaky bastards that come without warning - they are tough to deal with. It can be just about anything that triggers this sort. From bending to put a sock on, which you could do a minute ago, but you're not able to put a second sock on, as fingers seize up and from that day onwards, you're fingers refuse steadfastly to not work well enough to pull a sock on. So I either go without, or get J to do it. 


As with all my posts, I'm never looking for sympathy. Sure, its nice when people are sympathetic, but more than anything I want people to try and understand this disease. So, it you know anyone who becomes a victim to Inflammatory arthritis (or any other auto immune disease), just remember, your idea of what a sick or even what a healthy person should be like is often not the reality. So, ask questions by all means, but don't judge. Listen.