So I thought I would try and explain what my life has become lately and then you might be able to identify why my face has been whinging. So I get up, the leg tremors start, first while I lie in my bed, I try to stretch to waken and my left leg locks and tremors begin, they last for maybe a minute and when they stop my hip aches and I have to lie there again for 10/15 minutes before thinking about moving. Once I finally manage to get up I put my feet on the floor and go to walk and again my legs do not work they lock up and spasm, I can’t move them and it last about 30 seconds until I get moving and even then my legs are spasming for a few minutes. Oh my favourite game begins here where I know that I need the toilet, I know because my bladder is in pain and feels full but when I get to the toilet nothing happens, sometimes I have to sit there for about 30 minutes before a tiny dribble comes and that is it. I still need the toilet but I can’t go anymore and I have to make the decision to start the day. All this stress on my legs, hips and back causes great discomfort on my lower body. By this time I have usually endured at least one shock that has ripped through my body and started the intense pain through out my torso. Getting up and moving is usually one of the interesting parts of my day because this has all happened before I have even begun to think about what the day has in stall for me and I am already feeling the strain of the day. I start to get my computers out ready to attempt to do some work and then I head down the stairs for some breakfast. Now I should explain here that eating is not something I look forward to (or drinking as it stands) because everything tastes sour to me at the moment after eating and drinking the nausea begins.
Once I have eaten/drunk breakfast I head back up to my palace, this is uncomfortable and often a toilet break is required on the first landing toilet but once again the frustration begins because rarely will I be able to go. Then up to my room, which is my sanctuary and I feel safe and secure there. I turn on my computer and begin to work, this is interrupted with shocks and the pain from previous shocks, leg, hip and back ache ever so present. My concentration is so low due to the pain I end up being on a frustration ride that just end up with me feeling really down. All I want to do is work or study and I can’t, I can’t concentrate, the pain rips through me and the fatigue is immense. I battle with the feelings of giving up and finally give in. After a few more shocks I am reduced to little more than lying feeling sorry for myself, unable to do much more. The toilet intervals just add to my frustration and pain. A cold shower here sometimes eases my discomfort but can be a dangerous option as it can sometime spark a big shock. When I say big shock I mean one that literally takes me off my feet, it hits my kidney’s and I land on the floor, these types of shocks happen 3/4 times a week but if they happen in the shower it is worse (small space to fall oven leads to bumps and bruises).
Finally we get to lunchtime and then another decision is required, eat and feel sick, don’t eat and may feel sick with hunger, sounds appealing huh! I often choose the second because the end result is always feeling sick but others I choose to eat so I can attempt to do something in the afternoon. So I venture down the stairs and make something small, often having to break for a pointless toilet trip. I will always drink water or juice to try and encourage my bladder to empty, this often only results in pain but it is a necessary evil. After a snack I head upstairs again and attempt to do something, work, read, watch telly, soon none of these options become viable so I attempt to go to sleep, the fatigue by this point is soul destroying, keeping my head up right alone hurts my spine, my torso is on fire with pain and my legs are spasming. Usually I manage to drift off for 30 minute intervals which I waken from in need of the toilet.
Another cold shower is required for the Man coming home so I can have a few hours of normality with him, we have dinner and watch some telly which is a God send at the moments as he strokes my back and that seems to distract me from the pain for a while and I usually fall asleep after some blogging. The pain, aches, shocks and bladder discomfort remain but with some pain killers and the man stroking my back I manage to sleep. The fun seems to start when I am sleeping, I am woken about every hour with bladder issues and shocks, usually they co-inside with each other which you could in some ways say are handy. This continues until we are back at the beginning again...time to waken up.
I know this is probably not good reading but I am desperately trying to share with you all because I don’t want anyone thinking that I am giving up. I am not but as you can see hopefully, at the moment there is not a minute of the day that the Monster doesn’t grip me and I am desperate to get back to my life but I don’t see how it is possible just now and that terrifies me. All I want to do is get back to my life, do the things I want to, go back to work visit my nephew but I honestly can’t right now. Sorry.
Anyway thats enough for me tonight I am going to get some sleep.