I had a very eventful couple of days.
I will start with happy news, it was my birthday on Friday.
The big 34.. Though I really don’t feel any older which is the norm as you get older. Looking in the mirror expecting to see at 20year and instead you’re tracing lines and sagging skin.
I was totally spoilt on my birthday, my partner gave me my presents and card at 12am on the dot and a cake a few hours before.
My mum and sister visited in the morning, laden with gifts, a balloon and cake 🙂 then my brother came round and we all chatted and laughed into between cups of tea. It was brilliant.
I was able to sit downstairs while they were there and I was very pleased by this. They stayed a couple of hours then when they saw I was starting to flag left and I appreciated they did this and don’t ever take it personally. I went to bed and my son came in from work and I had more presents and a card. With a very funny verse inside ending that it was from my ever charming and dashing son.. He has a great humour does that man 🙂
I watched some wrestling with him, then got into bed and stayed there until the evening until my partner brought home chip shop food for me 🙂 I had a choice of him cooking or chippy, I chose chippy and pigged out. Twas gorgeous! 😀
I ended the day by watching a film cuddled in bed.
It was a wonderful birthday, and I was touched by how people put so much effort in to make it so, the cards, presents, and messages I received. Plus my doorbell was changed to the Happy Birthday song by someone, so it played the whole song every time it was rung. I have no idea who did that… ;D
I was struggling with one thing during my day, unfortunately a couple of days before the whole of my neck, both shoulders, my back and my left arm completely seized up. I couldn’t move these at all and it was agony. It happened at night and started with a slight stiff neck which spread very quickly. I was up all night but I waited to phone the dr until the morning and asked for diazepam as it’s what I’ve been prescribed for this before. I hadn’t had it this badly before, not my whole neck and both shoulders, I couldn’t swallow properly.
Anyway, the dr said she was gong to send the on call dr out to me though I protested I’d be fine after a few days on the diazepam. But no, she insisted and the dr came out.
So she came out and was extremely thorough and not happy with what had happened or how my body was reacting to her tests.
She did strength tests, putting her hands on the bottom of my feet as I pushed them. Well, my leg won’t have this and as soon as I pushed they went crazy, jangling, shaking and jolting all the way up my legs and into my left leg too. I looked like some odd kind of laid down river dancer!
She tested my pushing her hands against mine, which had the same reaction. Then as usual after any over use of my body I started pouring in sweat, my temperature went sky high and my body started shaking.
The doctor said she is not happy about how my body is reacting, I am too unwell and disabled for the conditions I have, I continue to deteriorate, she’s very concerned about my condition and I am showing all the signs of MS which I haven’t been properly tested for and should of been as soon as I started showing symptoms two years ago.
Even if it isn’t ms then she believes something else is going on and will do her best to eliminate several neuro and muscler diseases I could have.
So I am having an MRI spine scan, lumber puncture and neurologist appointment ASAP. She’s going to try and push this through and speak to my doctor about how concerned she is.
I got a lil choked up when she said I shouldn’t be living like this, I’m young I should be out working, enjoying life living instead of living as I am.
I really don’t know how to react. I’ve been told over and over I’m deteriorating, I’m ‘too’ unwell, it could be MS, or other conditions.. It’s kinda become second nature for me to shrug it off and have tests etc with no concerete results.
Plus, as I said to the dr, ME is so close to MS in symptoms and saying I am too unwell for me to have ME is derogatory to me and others that have ME.
I appreciate her honesty, her drive to help me and have me pushed up in the queue to see a neurologist. Her opinion that I’ve been lost in the system and not looked after or treated as I should be in terms of not doing tests I should have had. Or support from specialists, ie the pain clinic not helping and leaving me to live in agonising pain.
She’s a brilliant doctor, very stern if you’re trying to fob her off but so nice, efficient and trustworthy when you’re unwell. If she says she’s going to do something, she will. So I await until Tuesday and my phone appointment with my usual doctor to see if anything is happening.
In the meantime the right side of my neck is a lot better, the left side not so much. I’m trying not to dwell on it too much, I’m adapting to not using my left side and moving in such a way I look like a robot… Hehe :)!
It’s odd how you get used to these things, your symptoms and new ones springing up and testing your ability and strengths. I compensate by finding ways of using my right side more, not getting too frustrated by it and making jokes.
After all, fighting against it doesn’t help and if you can laugh at yourself then it makes things that lil bit easier 🙂
Fibro and M.E 