Pain

Since I last posted I have lost someone, a gorgeous soul, a very dear lady who I adore.

I am lucky to have a life filled with some very special people. Angels. The pain of knowing that they suffer & of losing them is mitigated only by the absolute joy of having had them in my life.
xxx

This post is about every day pain.

This weekend I put my back out. It's pretty crippling, no two ways about it, once your back is a mess you really are screwed. This is the third time in less than a month though, which makes it harder.

One of the problems with hypermobile joint syndrome or EDS (III) is that joints go "out" all the time. I sprained my wrist twice yesterday. I did it again today. That's just part of the package. It hurts.

And that's where the fun begins. This isn't just a condition where joints go out. It's about pain. It's about all the time pain. Not just when the joints go out - joints are always going out. I hurt all the time. Gravity is not my friend. Lying down a few times a day helps to decompress the joints that are otherwise compressed from being upright most of the time.

So, what do you do when for five years you've been told you have Chronic Fatigue Syndrome (CFS/ME), there's nothing that can be done about it, and then suddenly you're told - well actually you have a chronic pain condition. And if we manage the pain then you'll probably get some relief from the CFS/ME. I can tell you what you do. The moment that fatigue is a little less than it was you begin to do everything that you haven't done in five years. Which is great. Except...you hurt yourself all the time doing it.

The reality begins to sink in that you're merely trading one set of limitations for another set of limitations that look remarkably the same - but that are topped off with extra pain.

And then you have to once again start the grieving process for the life you don't have. And the life you won't ever have. You have to learn to accept the new one - this new one that is almost exactly the same as the old one that you had already accepted. But because it's different, you have to grieve again. It's in the rules.

Not only is there the physical pain. There's the emotional pain of grieving. For everything you can't do, for everything you will never be able to do. For the hope you had of getting better "someday".

And perhaps it's not so strange that you grieve for all of the other people who are suffering from various disabilities & who have lost the lives they expected, wanted or hoped to live.

Les oiseaux & le pain

This morning the birds at our house are enjoying what I would like to think of as a "French" breakfast, in spite of its lack of coffee or chocolate. I remember fondly when fruit & bread would have seemed a perfectly civilised lunch at our house. That was before gluten intolerance. Still though, I am enjoying thinking that our birds are treated to the highest class of food in the neighbourhood.

They seem to think so at any rate. Brownie (the name we've given our frequent blackbird visitor) was there even before I had finished cutting up the pear cores. If I don't cut it, Brownie will steal the entire core, leaving nothing for Chunky (Chaffinch) nor any of the assorted (and unnamed) wax eyes.

I am beginning to think the physiotherapist I went to see the other week does not know as much about hypermobile joint syndrome as I would like to think she does. "Push up off the floor, breathe out & let your back slump toward the floor...". My vertebrae promptly slid into unaccommodating positions. I would be tempted to tell her "you broke it, you bought it", but the ramifications are too serious.

If there could possibly be a good side to a soft tissue lumbar injury then it is that I finally broke down & confessed first to my husband & then my GP how severe my pain actually is. The poker face usually maintained by my GP slipped briefly into amusement when I described my reaction to the tricyclics that had been proffered to reduce my pain. "I have never been so depressed in all my life", I wailed, as she smiled on.

It was all seriousness after that, but the letter from the latest specialist must have been "special" indeed as the GP decided to break out the "good" drugs.

As we left the clinic we passed Dr Arse, smiling kindly at us. A broken woman, I returned the smile. It turns out he is the registrar my husband saw & thought was really good. Since it was "random act of kindness day" I decided to forgive him. Perhaps "Arse" was a little harsh. Besides, it isn't like there aren't other health professionals for me to actively detest.