Once again I have woken up with the entire left side if my body paralysed and I don't mean dead and still asleep and not quite woken yet like sleep apnoea. I am talking full on hopping about the flat in panic for over 20 minuets of the left side of the body being completely dead. I could not move my arms my legs , fingers or toes for the entire time no matter how hard I tried to concentrate. It is one of the scariest things I have ever had to endure and when it does come back to life again it's a really strange feeling like someone has walked up to you and thrown water over the left side of you and you can feel it running down the body and life returns to the limbs.
Again I had sharp pain in the base of my neck and the bottom of my spine when everything started to work again. When I examed myself, during the stroke like episode, I noticed I lost feeling half way down my neck and the numbness on the chest was half away across the left brest. Tha same was with the feeling down the side and groin. I have to say I never want to stay paralysed like that it's a horrible thing to experience and lifting your limb when it's dead weight is a shock. You don't realise how heavy a dead limb is.
I have been having big problems with my neck of late and the pain I keep getting in the neck is even over powering the high level of medication I am on and is really worrying me. The base of my spine has now joined in full time with no breaks from the pain just level drops and then gets strong again when I move around and try and do things. I am really starting to worry as to what's on earth is going on I have never felt pains like these before and they are really sharp stinging type pain. If it's all down to a damaged nerve as the spinal specialists did once suggest then it's starting to concern me as to what nerve it is I have damaged as when it's bad it's paralysing me ..... That's not a good thing to be happening as one day I could wake up and it may not come back. I really do fear that day!
With the high level of medication I am on just to be able to move about and try and get on with things are making me live life in a constant haze. I don't feel like I am completely there and each day seems like a dream. It's a horrible feeling made worse with lack of sleep due to the neck pain constantly waking me up.
I am determined to get back out fishing again this year as it's been 3 years since I had a proper fishing session on the bank. The medication will allow me to do this but I will have to have someone with me at all times just in case I have a cluster and also to be on the safe side with the level of medication I am on. My balance isn't the best on this medication so slopy banks may prove a challange. Thankfully my step father has agreed to come with me in sessions to give me a hand with all the gear and help when on the bank fishing and to keep and eye on me.
As far as treatment goes there isn't much else they can try for my clusters unless it gets completely out of control and that could mean a brain operation and I don't fancy that at all. Dr. Pickersgill , my neurologist is keeping an eye on me twice a year and the GP keeps check on my medication every 6 weeks so I am slowly settling into a new routine. I have had the MRI on my neck so have to book my follow up appointment in a couple of weeks so will hopefully get some answers as to what's going on with the neck and spine. I have started counselling to help me deal with the constant pain and depression that comes with the clusters and teaching me tricks to help me deal with things much better so there is some light at the end of a long dark tunnel it's just going to be a long painful journey.
For now all I can do is hang on in there and hope for the best taking each day as it comes. It's really difficult trying to keep a positive look on things all the time and not giving into the depression. I feel cut off from the world more now than ever before so there's a battle going in in my head at the moment , one I really do hope I win.
