sps

It's 4.0.0.54 am . As usual I've been awake for hours. I don't think I have a circadian rhythm anymore, I sleep after taking my muscle relaxant , no matter the time of day, and each time I get from 2 to 4 hours. When I could walk and travel alone, I'd sleep anywhere. In a crowded noisy bingo hall ( then if that wasn't embarrassing enough, I'd come out and do a great 'soldier fall' in front of loads of people. I was always alone too, which made it worse. So being a wheelchair ain't so bad. The sleepins still a pain though, I managed to go on holiday last year, a miracle in itself, with my daughter and grandson. I can see the funny side now of my daughter taking a snapshot of me fast asleep in my chair on the street in lanzarotte. One minute I'm waiting for a taxi with her, the next I'm in the town waking up to my daughter and having no idea of anything happening inbetween. My first and only holiday abroad and aeroplane ride. At 54. The heat helped my muscles and I got carried onto a boat by a nice man so it was a nice time. Great views. No swimming às my spine curvature put a stop to that. I still made the most of a boat ride and joined others on the roof to sun bathe (got a bollocking from my daughter for that) I was happy. Felt free and alive. Now my house is a prison.

I spent yesterday looking up life insurances (i'm 55) with my daugjter. I know it should have been sorted a long time ago. We ended up falling out, so it's still not done. Boy! When those companies get a whiff of a potential customer your phone starts ringing off the hook. Now no one calls me normally I mean no one so at least I now know my phone works. I don't want to bring myself down so I'll leave that topic, but, remember at school when you wondered what you'd be like as an adult? Just the same I'm afraid. Anyway I'm up at 7.0.0.30 tomorrow to go to the hospital to have an infusion of rituximab , will it let me go out the door? Ive been having ivig for nearly a decade, plus tons of muscle relaxants. Finally persuaded my neurologist to try something else. I want to be around people , I can't now because of sps, but I do want those things that others take for granted. To walk my dog in the woods , go to the dentist without ending up spasming on the floor because there's a woman talking to me. I don't know how to get through the days, seems like I'm just wading in water until I drowned.(totally impossible as I can't swim anymore but you know what I mean) I wanted to go to Spain again I've been once but I'm desperately trying to hang onto my daughter and that means accepting that dream has gone. So I need a new one one that's going to give me a reason to go on. I left Facebook and now I'm writing my rubbish on here . I'll shut up . Good day to all us mortals💙

I've always known I was different, had really bad anxiety where I cried and couldn't stop, couldn't 'do'relationships is push everyone away but hope they'd not go. I just didn't know how to act. I couldn't work, was afraid of every situation. I disliked myself and knew no one else would like me and they didnt. I sat alone at school, i felt like everyone else had been given a book on how to be human except me. Then I got stiff person syndrome. A complicated neurological illness that is to hard to explain. . Borderline personality disorder explains why I had the life i did. Or the life i didn't get to have. Stiff person syndrome was the icing on the cake.
#MightyTogether

I have sps which manifests itself in jerks and I can't breath. If I don't get t p bed to breath they turn into b ad full body spasms. Where I can't breath. I went to feed my dog but started jerking. I have a walker on wheels I got back to the bed . I thought taking my tablets into the kitchen would mean if get them in quicker. it I went off again. The spasms are impossible to stop without my tablets and the spasms are very very painful and no doubt the anxiety keeps them going. I'm in a place where I have a buzzer home call. But they will take a long time to get here. If I'm on the floor st U k spasming it's a nightmare. The ambulAnce men don't know about sps.

I'm in bed again , with my dog laid asleep by my legs. No wash or taking care of myself today. I'm thinking about finding my dog a better home, because she'd be better without me. But I'm assured no one will have her. She's like me, not perfect . People walk away, ironic since I spent so long pushing people away. I feel empty, just waiting for my teatime tablets to do what that always do...send me to sleep. I can't walk outside but inside I can. The anxiety I had was so intense then I get stiff person syndrome . No one wants to hear from me, that's not the illness talking. I reach out but no ones there.

Relax your muscles, the doctor says, here
Again those words that make me want to laugh
If I knew how sir would I lay here now?

In hospital, out hospital, my life
Will this help me? Well, maybe, maybe not
I take the handful of pills. Then I sleep
Little lucid?..sleep, little lucid?..sleep
Take these for pain and these to relax you
But again it's sleep, no pain in the sleep
No life in the sleep, no thought in the sleep
I dream of a kiss, to wake me for good.

It's progressive, but lots that we can try
The words still echo in my mind...9 years
One little drag of a leg, at first. BEND!
I stand still, it bends. I walk, it's stiff
WHAT? BEND! My brain is telling you. BEND!BEND!

Then I fall, what happened? I was fine!
No hands went down. The floor came up to me.
Like a soldier stood too long. Now he's down
A noise...thud. anxiety, thud. THUD!THUD!
Oh my body aches, my face bleeds. Again
Why do I fall doctor? No warning...fast
Don't know? . They don't know, but don't they know all?
My subconcious knows. It sees danger..panics
But reacts all wrong, judges danger wrong

Some walking in the house now, if alone
But outside my brain sees danger, cars, noises
Strange this thing. Wheelchair safe outside , no fear
No chair, my brain tells muscles no! Don't move!
I'm full of tablets, muscle relaxants
Yet still my body goes stiff, my back hunched
How easy the muscles bend the back
A rope tightens round my chest, a big one near?
A jerk. A jerk. COMING! I NEED MY BED
Tablets quick, a big one's coming . Too late.

Jumping, jerking, muscles spasming the pain!
It won't stop! Not ever, I'm sure! Breathe! Breathe!
Calm down and breathe and soon it would stop
But I can't, a snatch of breathe . Muscles stretch!
Oh how I pray for sleep , please let me sleep
Once sleep was a demon to me. No more

So much more to learn, but no one cares #Rare