For some reason I’ve been putting this post off. I’m not entirely sure why but hey and the ho, that’s how my brain works.
So. On Thursday I finally had my appointment at the National Hospital for Rheumatic Diseases to see the Fibromyalgia specialist. I’ve been waiting a very long time for tis appointment and was quite happy to travel all the way to sunny Bath to actually see somebody who doesn’t look at me with suspicion when I mumble the words “Fibromyalgia” at them.
I took my Mum. I’m not ashamed of that, a 30 (nearly 31) year old woman taking her mummy to the doctor with her. To be frank (I’m not Frank, I’m Joy-Amy), if I’d have had the chops to do it I would have been carrying my teddybear and clutching a sonic screwdriver for support.
The journey was nice, caught up with Mum and found out some interesting info and Interpol and her being banned from Africa, but I was so damn nervous. Why the hell was I nervous? Because I had the fear. You know the one where you think they will look at you and say “There’s nothing wrong with you, you’re making it all up”. Worse still, I had the hope. You know the one where they look at you and say, “I know how to make you better.” Hope is always the worst.
Consultant was a very nice chap, we had a long conversation about my symptoms and how I deal with them. He told me that I have a 90% chance of having another serious bout of depression (way to go the chirpy route doc). But screw the system, I know the signs, I know what I have to do and I know I have a million brilliant people who will help to pull me out of it. So that’s okay, I kind of knew that one anyway.
He asked me to strip down to my underwear. Which I did. It didn’t match. I always forget to make it match, am I supposed to do that? Women in films always seem to have matching underwear. Mine only matches by a happy washing day accident.
I decided to take my socks off as well. I know it’s not a romantic situation and my underwear (and my socks) don’t match but a girl should have some standards.
Which of course prompted my Mother to start telling the doctor about how I have always had Piggy toes. Brilliant.
Lot’s of poking and prodding later (that’s what she said). And I got to put my togs back on.
He told me he wasn’t going to put me on any of their coping courses because a) I hate group sessions and b)It would be preaching to the converted. I’m already putting in place the things I need to do to keep going, I just need to focus them better. Gentle exercise should be every day if possible and (here’s the tricky one) I need to be doing as much on my Bad days as I do on my good days. Jaw drop. So on the days when I have energy to do the things I want to do, I have to pace myself, and on the days when I can’t really move or think, I have to force myself to keep going and do something. That means working out a routine, I hate routine, it kills the creative mind. But if that’s the way it has to go then so be it.
The other big thing is that I need to see a psychologist. The Doctor said that I need them to help me develop a healthy coping mechanism and pain management so that I can keep working and keep fighting. So Psych here I come to let you play with my Zombies. Of course I have to be referred by my GP and I can’t see him until 7th August but that’s the NHS for you.
By the way, the Arthritis UK have an amazing Booklet on Fibromyzombies which explains it so clearly I think I might order a load and hand them out! You can actually download a copy if you fancy it, it’s on the right hand side, halfway down at this site http://bit.ly/JjEqyg.
Now Mum came out with a question I didn’t think of asking when in fact it’s the most important one.
Is this condition progressive? Will it just get gradually worse over time?
He said it goes in cycles, good patches and bad patches. But how you handle the bad patches will dictate how long they last.
This is actually the best news ever. I am not completely at this thing’s mercy, frak you Time, I’m working in cycles!
Afterwards I, obviously, cried. I went and cried in the ladies loo and then I went outside and stood in the fresh summer rain in my t-shirt and let it wash my face.
I cried out of frustration that there was no little pink pill to make me better, that they had no course for me to take. I cried because I know I have to change my whole outlook on my day to day life which is no small feat. I cried because my Mum had to hear the truth about how my life is when I try to shield her from it. But mostly I cried out of relief. I cried because finally, after ten years of knowing I have this thing, I got to talk to a professional, who knows what they are talking about, who took me seriously, who didn’t think I was making a fuss, who didn’t say I was making it up, who took the time to check me over, answer my questions. Pretty much I cried out of joy for the validation.
Mum killed my fibro diet for the day by buying me a cup of tea and a Cornish pasty so I could calm down a bit and then we went for a wander around the shops for half an hour before the train home.
I’m still feeling a bit emotional about the whole thing but I’m starting to put in to practice the things that he said (not all of which I’ve put on here because it’s only relevant to my case I think).
This weekend, DRC (My long suffering but always smiling boyfriend) and I took all the crap in the garden (sorry, dump) to the tip, then on Sunday, with some happy helpers, we turned that damn dump in to a garden. I’m so happy to have that space outside and even better, I took the Doctors Advice to heart and though I worked hard I didn’t overstretch things. Do you know what? I feel okay today, a little achey but not completely drained because I didn’t go nuts yesterday.
Hopefully it’s a sign of what’s to come.
Sorry for such a serious post, Sometimes you just need to spout the brain curd. I just thought it needed to be written.
Keep on keeping on kids,