It's been a long time since my last blog & it's time to catch up with all my news.
I really had a feeling that when 2015 started it was going to be a great year for me. My health was stable, all my projects were zooming along, I was occupied when I wanted to be and in a good place all round. However the NMO or Devic's disease decided that wasn't going to be the case and although not giving me a full blown hospitalization attack and take me out for months, it'd remind me that it was still around.
So January came arrived and severe symptoms started to appear. I had unbearable spasms in some major muscles on the front and side of the top of my leg and all my bum muscles, often at the same time or individually. I can only describe this by saying the following.
Imagine that the muscles on the top and side of your thigh all the way to the side of your hip are put in a vice and that has a handle on the end of it. Slowly you feel a slight twinge in the muscles which then gets stronger and you then feel this electric shock wave as it travels upwards and starts to tighten the muscles with the final result ending in the muscle being pulled so tightly and the leg then jumping up involuntarily out of the sitting position accompanied by incredible pain. This action occurs every 4 seconds (I know as I count it mostly out of fascination at first then so I can curse it even more). Each time this happens the muscles don't relax in between spasms and pain, what that motion does is wind that handle tighter and tighter and the muscles until it decides to stop. There is no relief from these spasms, nothing in particular that sets them off and no warning. Not to mention that they don't just focus on 1 leg at a time. Once it's finished on 1 leg after hours and hours, it will always swap to the other 1 within minutes.
As if that's not enough to endure, the disease then likes to add 2 other guests to the party. Severe spasms in my bum cheeks right in the centre of each one, and the other, the only way to describe it is by saying the feeling of what a "red hot poker" might feel like if stuck into into the centre of each cheek. Sometimes this all occurs at the same time as the thigh and hip muscle action or just on it's own but combined.
The other symptom that appeared permanently for 2 months (although there all the time but bearable with pain medication and mind over matter & strength) is that my entire upper body only on my left side feels as though it is severely sunburnt. It's not hot to touch at all. Sometimes you can follow the inflamed nerve pathways by looking at my skin, however it was so painful that I couldn't touch my underarm (the worse area) and most days put my arm all the way down.
All these 3 things hung around for pretty much the entire 2 months which nearly drove me mad! Sadly enough it did send me into a shocking state of depression which I couldn't start to get out of until the symptoms started to ease and be more manageable. I get these symptoms all the time but nothing like this where it was 24 hours a day with the longest spasm/burning episode going on for 16 hours straight. All the drugs in the world couldn't fix this. I was in a state of just hanging onto my sanity and feeling as though I was hanging off the side of Mount Everest by the tips of my fingers. My most common and printable mantra at the time was "I hate this disease, I hate this disease" which I'd say over and over again and again whilst crying my eyes out for hours on end. I was numb inside and just suspended in my life, hating this disease, what it'd taken away from me and where my future was going or not going.
Then March rolled in and I got a cold (which I never get) which turned into a shocking bronchitis bug which has so far wiped me out for 2 weeks and I reckon it'll take another week or so to fully get over it. I not only get a bug but it affects all the damaged parts of my spine (lesions caused by the disease which rum from the top of my spine every 1 to 2 inches or so down to the base) which in turn affect all the muscles that those nerves govern and run into. The worst being it makes my legs very stiff and almost impossible to bend or move, my posture and many other things. So whilst feeling very ordinary and only awake for about 4 hours a day, I still need to cycle for 30 minutes and do squats and stand on my transfer machine for 20 minutes as well as adapted sit ups, stretch my hip flexors and do weights and other stretches every day!
I'm sorry when I look at it, it looks like I'm having a really great winge and need to build a bridge but I wanted to explain where I've been and the complexities that the disease brings to my body as well as what I live with and been living with for the 3 months of 2015.
I was also busy doing January and February and things to tell you about, and early March before the cold which continued today but I am exhausted after this and will post those over the next few days so as not to bombard you with to much at once, and exhaust me as well.
Thanks for listening, have a great day and see you tomorrow xx.
In a wheelchair permanently since early 2010 due to a disease called NMO. I am loving getting out and about in my wheels. My blogs capture my journey.