Wednesday, October 24, 2007

Good and Less Good

I'm blogging to the tune of: Another Case of Milton Jones. There's some very surreal comedy on Radio 4 at the moment. I approve. Now I just await the return of The Museum of Everything and my life will be complete.

Good things from this week: There is a new addition to my extended family, and she is tiny and beautiful. Also, the wonder that is Camden Council has - rather grudgingly - agreed to give us £300 compensation for the appalling mess they made of that tiny adaptation to our side gate that should have taken them five minutes but actually took five months.

Slightly less good things from this week: I hate change. I really do. It makes me extremely grouchy and causes migraines and chocolate binges and panic attacks. I haven't eaten Opal Fruits since they rebranded them 'Starburst'. I spent a week frantically cleaning and reorganizing after Buffy ended. When I started going out with my Girl, I sat at the top of the stairs all weekend feeling deliriously happy, but nonetheless very confused. It is therefore not all that surprising that for the past couple of weeks I have been feeling quite rubbish. Even though, technically, nothing at all has changed. I have a new diagnosis - OK, not new, just newly discovered, and responsible for all my problems, from pain to anxiety: Ehlers-Danlos Syndrome (hypermobility type, also known as type III), a rare genetic connective tissue disorder. I already know everything I need to about how this affects me, and probably how it's going to affect me for the forseeable future. So I really should be nothing more than relieved to have the correct diagnosis and some possible treatment options. Except that I'm not particularly relieved. For the first week I was pissed off, stressed out, worried and depressed. Now I just feel stranded. At least when the dx was Fibromyalgia (which I still have, but apparently it's secondary to this 'root cause' thing), there was a possibility that I would spontaneously improve at some point, and that I could at least keep things under control. There are a wider range of possible outcomes from this one. There are also possibliities for treatment, but none of that comes cheap (of course) - and in the meantime, no one's telling me what I should do to help myself, while there seems to be a variety of opinions as to what the prognosis might be. And there's the fact, as I ranted about over at 'Ouch' earlier in the week, that my mother was trying to get me a diagnosis of something along these lines when I was two years old, and that had the doctors listened back then (or even just two years ago), many of my problems could have been prevented. But then, what can you do? I'm working on undoing some of the damage. Progress reports to follow...

7 comments:

joy said...

Oooh. I thought your Ouch post was incredibly moving and frighteningly perceptive... and an effective deterrant from anything trite I might say. But I think you're well entitled to throw a few items/choice words around...

birdy said...

There is no should about how you feel. I am sorry that some dr's are utter muppets....

I like having a 'proper' diagnosis and in the long run it was better for me.

Sweet Cocoa said...

omg I k now exactly what you mean about the Diagnosis and going through the anger stages. It was nice to finally have someone say there is a cause for this pain and weird things going on in your body. Then when you get home and think about the big picture it gets a bit overwhelming. I am just glad I have found a great support group and others that go through similar issues.
HUGS! from a new reader but I have been on HMSA boards for sometime.
(cocoa)

Queerty said...

Hello

Long-time no speak! Lost login, lost will to find it, a long story, but I'm back, which is good.

I too am reading the Book of Dave. I'm struggling cos I have to read it so slowly to get the language (part of my problem is reading too fast at the best of times!)

Take care

rosamundi said...

think positive and eat more chocolate!

rosamundi said...

Oh, and steal away ;)

BenefitScroungingScum said...

Hello, I'm glad you've got your diagnosis, if not a little late. It gets a whole lot better on that being annoyed with the 'should've been diagnosed when a kid' thing. In fact, pretty much everything gets better a couple of years down the line from being diagnosed, in this instance time really is the thing that heals. Bendy Girl