I didn't really want to write a blog complaining about the hard times we are all going through and the difficulties we are all facing getting treatment for on going issues other than covid related. It's been a crazy experience and one I'll never forget.
I actually thought I was getting somewhere with my clusters and damaged nerves but reality is I just seemed to have a break. I was excited last year as my attacks reduced right down and the nerve seemed to ease and I found I could get out and about more and move around better but this was short lived. As soon as winter hit and the cold weather started the pain returned and so did the clusters.
It's really obvious that the nerves are aggravating the clusters and when in full cluster attack the nerves actually light up and join in so not only do I have to deal with the cluster attack but also severe pain down the left back, arm and leg.
Due to having so many health issues since the clusters began I was told to have the vaccinations to protect me from the covid infection, after the first I was a bit rough and the second made me lethargic for a couple of weeks but I didn't really have problems. What I did notice is suddenly my clusters began and they would not stop. The attacks seemed completely out of whack with my body and the times I would normally get a cluster were clear and the attacks would come out of the blue with no pre warning signs.
After suffering for all these years I can vertually predict some attacks and know when during the day they are likely to come, especially when we have bad weather. It's as if I can feel the high and low pressure changes have effect on my head.
Since having the second jam this was all out if sync for around 2 months then seemed the settle back into my regular cycle with the new addition of stabbing pains in the right side of my head.
Well I have fought through the attacks and although this year has been a living hell I still feel I am managing to control them and keep them from getting unbearable again but at this rate I don't know for how long i am hoping things will calm back down again as seasons change.
The back issue and the bottom of my spine has become a real problem now and despite it easing last year it has just become worst and feels like it's slowly spreading. I never knew the spine could give you so much pain it's really unbearable and makes you vomit the pain level is so high. At first I thought I had done something to my back and hoped that after rest it would ease and go away. This isn't the case and the problem comes and goes. It seems to last several days then I get a break with just very mild soreness on the bottom of my spine and then it returns. It seems to be worst during wet cold weather so at first I thought it could be arthritis but surely you shouldn't get such a high level of pain. Until they scan it I just haven't a clue what's happening so I just gave to continue with the battle.
The neck has now spread to both sides and the pain is no longer just in the side of my neck but also in the center of the back of my head where the spine meets the skull. No matter what I do every movement causes different levels of pain and it even effects my shoulders and arms.
I was told it was damaged nerves in the neck on the left side but something tells me they got it wrong. I now have pain down both sides of the neck, down the upper part of my spine to the middle of my shoulder blades, pulling down on the back of my head causing stabbing pains in right side of the skull. When I move my head all I can hear is popping, grinding and crunching to add to the pain it gives off. The worst bit about the neck issue is it effects my arms and hands and I get problems and pain with the fore finger and thumb on both hands with swelling coming up in the back of the left hand.
It's crazy what's going on at the moment and nothing I can do except wait for appointments that could take a while to appear due to the issues of covid and the stress it's putting in the NHS. I have to admit tho I do feel as if I have been swept under the table and forgotten about. It's now coming up almost 2 years since I reported the new problems and other than it getting worst nothing else has happened and I am still sat waiting, fighting pain, fighting clusters.
I have tried staying positive, keep trying to exercise the problem areas and get on with things but the pain just becomes too much to bare in the end. I even tried to get back out fishing again this year, put on a brave face and get out in the fresh air wich was enjoyable to begin with but felt like torture buy the end of it. I need to get something sorted as I don't want to loose my fishing it's the only thing that keeps me sane.
How much more can one person take......
