Once again the cold weather puts a halt to any type of activity i try to do. The beast visits early mornings between 2 and 3 am like clockwork now and after i deal with the attack or stop it happening i find myself awake and unable to go back to sleep due to the shadows hanging during the day. You would think after all these years i would be used to it by now but i still struggle on a daily basis. I avoid going out during the day in fear of cold wind and me moving about aggravating the damaged nerve in the neck and down the back which also ends up setting off my cluster attacks. The last 2 years i have to admit have been hell trying to deal with all the health issues i now have. Dealing with the hiatus hernia, stomach acid and re-flux, food trapping and chest pains every day alone takes it out of you. Constant neck pain and sharp shooting pains down the left side of the body, down the back and leg, across the chest and shoulder constantly weakens you and you find by the end of the day you got no strength and then having to deal with the cluster attacks on a daily basis is enough to finish you off. I have to admit i am struggling.
When this first started years ago i promised myself i would do anything i could to beat this thing and get these attacks under control. When the clusters turned chronic around 8 years ago i actually thought i was going to die and there was no hope for me yet here i am all these years on still fighting the same fight as when i started. Since being diagnosed I have been on one mad journey with my heath with all sorts going on not to mention the hell it played with my mental health and i am still fighting. Medication made me worst and then slightly better and finally i started to get control of the cluster attacks and by using oxygen, injections, medication and heat treatment i am able to abort more attacks than i suffer. So things were looking up for me for quite some time. I was managing to get out a couple of days every couple of months over the summer months fishing with the club and was enjoying it. I write my blogs and try and keep myself busy. Then 2 years ago something happened to my neck that even the specialists are a little confused, They told me the nerves have been turned up from level one sensitivity to level 10 and can't be turned down.
O k i thought another problem i have to learn to ;live with and at first it wasn't too bad. Occasional dead leg and arm, occasional shooting pains numbness and pins and needles but nothing that would worry me too much. Then suddenly i started to get the freezing experiences over my head and down my arm and back like you are suddenly being frozen. along with some weird and wonderful light shows in my vision. I was told its the nerve and not to worry but that didn't make it any easier.. Then the hernia decides to play up and give me chest pains , along with numbness of the arm meant the doctors worried and sent me in for my heart, where i find out i have swelling around my heart from the hernia and my injections, that are the ONLY thing that can abort an attack, cause narrowing of the arteries so i have to be monitored from now on. Now the nerve pain has decided to spread down the left on my body. My entire left arm is contently having problems along with my left leg. My left foot keeps going dead and i get some mad crazy pains up and down the leg. Also the pain has spread across my lower back with burning sensation on the very bottom of my spine and sharp pain about 2 cm in size just to the right of my spine. All this combined with the rest of the issues and the clusters is making for one miserable life at the moment.
The latest problem is pain i am getting across my back just under my left shoulder blade. This pain comes and goes but when it does come it really wipes me out in seconds, causes me to sweat suddenly and a feeling like i am about to pass out. Then once its gone it leaves a really sore tender patch for a couple of hours. I reported it again to the doctor as this pain has been now on and off for the last 3 years but lately i am finding in bed it is waking me up. The doctor has done blood tests and nothing has flagged up so we will have to see whats next. I am really starting to find it hard to keep my head with everything going on at the moment. I am also going through my DLA to PIP changeover which is causing me even more stress as they tried to get me down to the office and despite me explaining my condition they still made me go down only for me to end up having a massive cluster attack 20 mins into the review so they had to stop and send me home. Now i am waiting for them to come and do my home review. Still haven't heard from them for a whole week., they were on my case when they wanted me to come down texting me every couple of days, crazy.
Well this is now the second year it has put a stop to my fishing and i am having more problems from the nerve than i expected so i think its going to be time to get referred back to the spinal clinic and opt in for the cervical nerve root block despite the risks and just cross those bridges when i come to them. Surely i wont be in any more pain than i already suffer, i don't think the body can take any more. There isn't much more i can do in reality. I am doing what i can to manage the pain and conditions. I am being strict with my medication making sure i take what i should when i should and i am following all instructions from the doctors and specialists. So why is it i feel lost? Why does it feel hopeless? All i can do is put my head down and get on with it. Keep the though that I CAN beat this in the end and just keep pushing myself until i can push no more.
