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.
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