There are times when i actually think i am getting somewhere with this illness and there are times where i just want to scream and give up. It takes so much strength to keep pulling yourself out of the depression that comes along with chronic cluster headaches and the constant battles with the pain on a daily basis. Being chronic and having daily attacks feels like you are being constantly tortured and you have no control over the torture and when it happens.
I have had such bad luck when it comes to preventative medications it really is starting to become depressing as you dont know what else you can try. My Neurologist is brilliant and is willing to try anything i like. We have been doing GONB (nerve blocks) every 3 month as it seems to give me some reliefe from the daily torture but it causes issues itself with the damage i have in the left of the neck. I am still waiting for scans and referals so we can find out what is going on in the neck as it causes so many issues now its crazy. Effecting my arms , my back, my lower spine, my legs and my chest, the problem in the neck is become such an issue i struggle with it daily and its effecting everything I do.
I have woken up several time paralysed down the left side of my body , now when i say paralysed i mean it , not numb, not dead but actually could not tell the brain to move my arm or leg no matter how hard i concentrated. Then only to have it suddenly come back to life after 10-20 minuets later with a feeling like somone is pouring cold water down my left side of my body. Its the strangest thing ever but its really starting to worry my as i fear one day i will wake up like it and its not going to come back to life , I could not live like that , not with everything else i have going on with my health.
I have such bad luck when it comes to my health its crazy and becoming an issue. Once again, as soon as i thought I was wining, something else comes along to throw a spanner in the works. Now another infection in my groin making walking very painful as it feels as though someone has kicked me clean in my family jewels. Another course of antibiotics making me feel rough and weak all the time. I am praying this infection goes at the end of the 2 week course as if it doesn't then the problem could be a lot worst than just an infection and something I really don't want to consider.
I am slowly trying to get myself back out on the bank fishing again but having issues moving, walking and lifting things is making life hard and miserable. I used my fishing as a way to control my mental health and deal with depression but not having this outlet for the last 3 years has really started to take its toll and effect me badly. I try and keep busy using social media and friends and members of the fishing club send In thier catch reports to me so I can put them up on the social media feed and this keeps me focused on fishing but it's killing me not being able to get out myself.
Well this year I decided no matter how much pain I am in or how bad I feel I will make the effort to get back out on the bank. I don't care if I have to employ someone to do all the hard work, lifting and setting up for me to save me struggling and suffering in pain. The way I see it I could be sat at home in agony or I could be out on the bank in agony but at least I would be out in the fresh air doing something I love rather than sat at home dwelling on my situation feeling bad and sorry for my self. Its only US that can help ourselves when we find ourselves in such a situation. I have learnt you cant really rely on anyone other than yourself when things turn bad and when you do try and rely on people and they let you down it hurts so it's best to get on with things and try and deal with each issue one by one as it happens.
I am still waiting for the NHS to catch up with thier services after the covid out breaks and lockdown as there are big waiting lists for all treatments. I am waiting for scans on my neck, scans on my back and lower spine and also been referred for trauma counselling regarding my mental health but whilst I am waiting things are just getting worst and worst instead of having the right treatment to get better. It's got to a point where I don't know what do do as everything I try just makes things worst. Let's hope they get things sorted soon and I don't have to wait too much longer.
