Prison within a prison

Last night I was scared again. As I lay there in bed next to Harry my legs started to shake uncontrollably and they haven’t really stopped.
The reason I was, no, the reason I am scared is that this is the first time since last year that I have felt that something really bad was wrong. Something worse than usual.
I have had flare ups and I generally feel shit every day, I know better than most people what it is like to live with pain. You just do it. You wake up and the pain is there and you try your hardest to ignore it or pretend to the outside world that it isn’t there, but it is. But last night as I lay there, unable to control my shaking legs, no matter what position I tried to make in to, panic started to flood my brian. On the outside I remained calm, somehow. Harry was worried I could tell, I could also tell he didn’t really know what to do, because neither did I.
I was shaking so much that it was moving the whole bed, and I couldn’t stay there, Harry had to get up to go to work in the morning and I knew he wouldn’t sleep with me turning our bed in to a vibrating one for the night. So I told him I was going to go downstairs, maybe sitting differently or walking would make it better, so I swung my legs off the side of the bed, grabbed a hoody from the end and picked up my book and my phone. Then I stood…

I say stood in the looses sense of the word possible. Imagine standing and your legs moving side to side underneath you. They were shaking and they could barely hold me. I took a while to steady myself but the longer I “stood” there the more I shook and the lower down I sank.
I somehow made it to the top of the stairs, and I took my first step.
It felt like the whole staircase below me had turned to jelly and my legs didn’t know which way was up let alone how to actually walk down stairs. I felt myself falling, so I did the only thing I could think to do. I sat down. Probably the wise decision at the point because as my bum hit the step behind me one of my legs seemed to lose its bone. It was so jelly like. So there I sat for a few seconds, panic getting worse inside my head “Do NOT Cry!” I muttered to myself, as I made my way down the stairs on my bum, something I haven’t done since I was a child. Then I sat at the bottom on the stairs. My plan had come undone. I now had to get to the sofa. I forced my self up, staggered to the lamp, then to the sofa. I am condensing this version because I can’t tell you how long it actually took me to do these things.

Once my arse was on the sofa, that is when I started to cry. That is when I let the panic out. That is when I let myself admit that I am scared and acknowledged that this is more than just a flare up. I hit the button on the recliner and I tried to tuck in to my book, I managed a few pages but I was still shaking. It’s so distracting. I’m scared that this could mean that something else is wrong, or that my nerve damage is getting worse… I have my pain clinic appointment in 2 weeks and I don’t want anything to happen which might delay or cancel this treatment. I’ll bring the shaking legs thing up with my dr when I see him at the hospital.

I stayed downstairs for a few hours, trying to read, scrolling endlessly through the internet on my phone, and trying again to get these fucking legs to stop shaking. I wondered if I had trapped a nerve somehow how, but no. I touched my leg and it was rock solid. It felt like every single muscle was contracting a million times a second and like every single nerve ending in my leg was firing off messages. The spasms were so strong and so fast that to look at, my leg looked almost still…. but if you watched it, or you touched it, you could sense it. I mean, it was moving so fast upstairs that it was shaking the bed with me, Harry and a dog on it.
Eventually the cold got too much for me, I had to try to get back up to bed. The shaking was a little less by now… or they weren’t and I was just used to it.

Anyway to cut a long story short I eventually made in up the stairs, and in to bed. Harry managed to stay asleep even though the bed began shaking again once I got in. I managed to get some sleep, but woke up shaking still.

Safe to say I’ve been stuck in bed again. My prison within a prison. Harry demanded that I stay in bed, he was still scared when he woke up and before he went to work. My mum is petrified. She wants to take me to hospital, but as I said to her…
What are they going to do? I’ll sit there for hours, shaking, to be told it’s to do with my nerve damage (probably or be told that I need my legs off knowing the NHS) which we already know (the nerve damage not the loss of limbs) and they will either want to keep me in – which is a waste of time and money and a waste of a bed for someone who might actually need it and it will make life more difficult for my mum and for Harry as they will have to sort out the dogs and then have to sort out coming to see me etc.
When I can just sit at home, continue with my medications which are meant to help nerve damage anyway, in a bed, resting which is what they would make me do at hospital.

What they don’t know is that since then my hands have started shaking, which is new. It comes and goes, but I have agreed to go to hospital IF anything else happens, if it gets worse or whatever.

So, there is my update.


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