Once again as summer starts to come to an end and just as i think things are looking up for me my life is turned upside down. The cluster attacks every morning between 2 and 3 am have started waking me consistently now and for the last month i can'y remember a day i haven't been woken up by them. I am having them steadily through the day but still manage to keep them under control using the Oxygen, Injections and Pregabilin tablets. They seem to have settled averaging between 2 and 4 attack per day depending how bad i feel. I have noticed that its the nerve pain in the neck that are bringing the attacks on and I don't think its the clusters just getting worst again, but i am no expert and my neurologists explained they can come in episodes so maybe that's whats going on. All i know is i have to continue to manage them the best i can but lately its been having an effect on my mental health and I am starting to question what i am doing and why i am doing it.
Dealing with bad ref flux and acid problems from the hernia with food trapping due to the swelling near to my heart. Not to mention the severe chest pains it keeps giving me on a daily basis making me feel like i am going to have a heart attack. I have lost count how many times they rushed me into hospital for this. Then the nerves in the neck sending shooting pains down the left of my back, down my left arm and across my left chest really makes it double scary. Each day i find something new with the left side of my body, one day i struggle to walk because the left leg wont seem to work correctly with patches of numbness and pain all over the left side of my body. Some days i wake up before the left side of mu body has even begun to wake up from a cluster. All of a sudden i try and move and realise i am completely dead on the left side. Scared me a couple of times thinking i have had a stroke or something but then i feel like a tingling and running water sensation over the left side of my body and life returns to it slowly. I spend every day dealing with pain in both side of my neck, not sure whats that's from but was told its referred pain from the left side and that's why the right side hurts plus i have a stupid fatty lump in my lower left back that keeps making is sore right next to my spine. These are just the daily issues i have to deal with and i really thought i was managing well considering the amount of problems i was having.
Now i have found a new problem, around 2 cm long on the right side of my spine. its a painful spot between the spine and the ligament or muscle that runs down the side of it. I only notice it when i don't have the other nerve pain to contend with and it comes very rarely. The trouble is when it does come i find i also get pain in my tail area and across both left and right bum cheeks.Then i try and walk and its like both my legs are on fire.I have tried relaxing but when ui feel my legs the muscles are in a constant state of being tensed up for no reason. I only had it once before a couple of years back where the doctor rushed me to check for clots in the legs but nothing showed up and we couldn't explain it, this is the first time something has actually caused it and now its seems to be causing it more and more regular. If i don't have enough troubles as it is all i need now is something else to add to the mix.i am starting to wonder iif its not spreading through the nerves , if it can do that sort of thing,.
Now to top everything else off i now have to go through the DLA to PIP change over. Now the last thing i need is my mental health to start playing up now whilst this is going on. I tend to panic and hide away and could end up messing it all up. The first thing i did was ring the doctors for help only to be told they cant see me for a month, so i thought i know i ring my share care nurse for help and advice to find out shes off sick and the person that's supposed to be covering me isn't in today. So all the people i really need to talk to i can't get hold off, its crazy. I just don't know what i am going to do. I start the day in tears and end the day just as bad. I have so much going on in my head i cant seem to focus. Its been so bad i cant even convince myself to go fishing. Even stupid thing like running out of milk seems like its the end of the world! Its just milk ffs......
Well whilst i try and get a grip on reality once more I am just praying things start to improves soon as this is the lowest i have been for years. I know i am the only one who can pull me out of this rut but sometimes you need a bit of help, the trouble is many people believe if you don't look ill then there is nothing wrong, I am just trying to get back to the point i was at where i was able to manage these conditions each day and just get on with things but once again they have taken over my life, all because one little thing set it all off, its driving me insane.
