Hope is incredible. It’s a miracle in itself, I’m tempted to believe. Doctors who listen to you and sympathise and give you plans of attack are also incredible and, I’m also tempted to believe, miracles as well! By that count, yesterday was a day of miracles.
The good news: I don’t have rheumatoid arthritis.
The even better news: I may have found a solution to beating this M.E. (that is officially what I have now and I just chose to get the version including ridiculous pain).
The not-quite-bad-news-but-hard-work-news: the next 12 weeks are going to be hard hard work and I am going to need grit and stamina and a lot of willpower.
(Everything that follows is still theoretical at this point).
After seeing a specialist, I have discovered I overworked my body to the point I actually reset my brain! Those years of working, finishing a degree, doing as much as I could at home, being involved at church, maintaining a social life, recovering from never-ending illnesses and minor surgery and dating (the most amazing guy ever, incase you hadn’t got that, who I got to marry) were too much. I thought I could keep pushing my body, whittling away at my sleep, living on high adrenaline constantly, for far too long and I have damaged my body. Not irreparably but definitely badly.
To cut through the medical mumbo-jumbo, our bodies are designed for our nerves, muscles and brains to communicate. The nerves tell our body we’re in pain, the brain listens and informs us and we can then do something about it. Same for muscles, they tell the brain they’re stressed and need to relax and the brain fixes it. The problem comes when you start training your brain to ignore your nerves and muscles and tell them they’re wimps and should be able to take more and should be able to function 24/7. Your nerves and muscles just scream louder to get your brain’s attention. And when he still ignores them, they scream louder. So when you eventually can’t ignore them any more, they’ve learnt to scream so loud, it’s deafening and they refuse to get quieter. That’s what I did. Your body *needs* to be able to relax (apparently we only actually need 20 minutes of deep sleep, where our muscles can completely and utterly relax, each 24 hours but we do NEED that). Your brain, nerves and muscles need downtime. I refused to give it that so have trained my body into a state of hyperalertness where nothing ever relaxes, not my brain, not my nerves, not my muscles. And *that* is what is causing the pain and fatigue.
So now I have a three-pronged attack plan: kill the pain, rehabilitate the nerves, muscles and brain and learn how to sleep properly. Simple, right?! (No, absolutely not!).
Kill the pain: I have been told to stay on medication because in my case, pain does not actually mean my body is doing any damage. It’s just screaming for the sake of screaming.
Rehabilitate my body: I have to teach it to relax. This, as we have discovered, does not come naturally to me! My specialist suggested intensive swimming as therapy. Basically, this uses the muscles which have become very weak, it relaxes them and it tires my body to help it reach the “good sleep”. To rehabilitate my brain: work with a clinical psychologist to learn to pace myself. Not a psychiatrist. The problem is with my brain but it’s not “in my mind”. I am not imagining pain or fatigue, that is very real, he assured me. But my body *is* responding to stuff that barely exists.
And lastly: learn how to sleep properly. This is partly helped by the swimming in giving my body a reason to be tired and sleep. The other side is learning to shut my brain up enough that it’s not constantly jabbering away to my muscles and nerves when I am sleeping.
Whew. It’s a lot and I am under no illusions: these next 12 weeks are going to be hard. I have to push through pain and potentially create even more as I retrain weak muscles. But if I can regain some of my energy and eventually lose some pain it is so so so so so worth it.
God has been my Sustainer this far and He has taught me to cling tightly to Him. I have a feeling a bigger battle is just starting and I’m going to need all of the lessons I’ve learnt over these past few years. I just hope I’ve learnt them right!
Watch this space…
Warning: this blog may contain blood, sweat, tears, meltdowns, anger and fears over the next few months (nothing new, I guess). And hopefully a lot of praise to my God who has held me so far and isn’t going to drop me now. Maybe some progress too!
P.S. Remember: it’s theoretical at this point and only the next few months will show if my specialist is talking sense or not!