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.

Ink Pink does the Happy Dance

About 3 months ago I saw this awesome doc. A conventional one, at a real hospital & everything.

He didn't bat an eyelid at the whole ME/CFS & the MCS thing (even though I had a carbon filter mask on). He did a very thorough examination & then started telling me what was wrong with me...

He called it Central Sensitisation. It's something you can find out about by googling, but basically the way I interpret it, it means that my central nervous system (CNS) has gone ballistic & started producing really weird symptoms...like all the symptoms that go with ME/CFS, and MCS, among other things.

He talked to me about pain...Pain, what pain?...I don't have pain...well, not really, I mean it doesn't count. I mean, it's normal, isn't it? I just sprain things occasionally, I don't worry about it or anything...medication? No, I don't worry about that. Not unless I'm desperate. Even then...

Apparently because I have had this joint disorder (Benign Hypermobile Joint Syndrome - benign doesn't mean what you think it means) forever, I have had a whole lot of pain all my life. Because it's always been there I thought it was normal. And because I thought it was normal I ignored it. Meanwhile (it gets slightly more tricky) the neurons in my CNS got really good at firing for pain signals. Basically my CNS got a PhD in pain while I wasn't looking.

So. The doc tells me off for not taking pain meds & asks me to take then 4 x a day. Sure Doc. No problem, I can do that.

So I do. I take the pain meds. And when he tells me to increase them, I shrug my shoulders & increase them. He tries me on a few other meds that are supposed to help settle my CNS (down boy!) but they make me pretty ill so we lay off those & stick with the pain meds.

In 2 months I suddenly realise...my MCS isn't as bad as it was. I can go into a store without getting sick! And my ME/CFS! I can go out in the garden. I can "do stuff". I have more energy. Surely this isn't connected to the pain medication...

On my next visit to the doc he's looking pretty smug as I tell him how my whole life is turning on its head. I was sick. I was very sick. I'm beginning to realise that each time I start to feel fatigued, or each time I have brain fog, I can take pain meds & my symptoms will go away. I learn to scan my body to check for pain when I get fatigue or brain fog. I realise that every time I have these symptoms my pain has ramped up without me noticing.

This doctor has seen people like me before. He's seen people with MCS. He doesn't think we're freaks. He doesn't think people with ME/CFS are malingerers. He thinks I am funny because I am a walking talking textbook example.

Now I'm out in the garden. I'm doing housework. I'm out walking in the gardens, walking down the main street in town. In 3 weeks I go from needing a full respirator to go to my GP clinic to not even needing a carbon filter mask. I am beginning to live like a "normal". In just 3 months of taking nothing other than pain meds. No magic detox diet. No miracle treatment.

Everything (well ok, maybe not everything) that has been wrong with me over the past few years comes down to one simple thing. Pain. Talk about holistic. Every symptom I have he was able to track back to this one cause.

I'm not cured. I'm still sick. But I have this awesome feeling of freedom. I am recovering. I am certain this is going somewhere good.