It doesn't matter how many attacks you get and how regular they become you never can get used to the level of pain these attacks bring. A cluster attack is one of the worst things i have ever experienced and i understand why the condition is nick named "suicide headaches". There has been no end of times where the pain level was so high i was actually on the floor , on my knees, head in had praying to god for him to take me, for me to die and have the pain stop for ever. Some people may think you are just being stupid or over dramatic but until they ever experience the level of pain you get regular they would never be able to understand. It has taken a lot of effort and strength to stay focused and keep going despite having these attacks on a regular basis every day and being told i have to spend the rest of my life experiencing the same thing over and over again! I suppose it wouldn't be so bad if there was treatment you could have or there was something they could do but there isn't enough people who suffer this condition in the same way to warrant them spending money on research and treatment. In the USA they have begun research into the condition but there is still very little known about any successful treatments so hopefully as years go by the UK will also start researching into the condition and more and more will be learnt and possibly one day a cure would be found. Until this ever happens i suppose i am just another test subject where they can try different things and hope it works.
As the colder weather has no started approaching us , especially during the early hours, i am seeing an increase in the amount of attacks i hare to deal with and finding myself with less and less pain free days. The cold weather being one of my main triggers is really a pain in the backside (or head) excuse the pun. It means that during the winter months i can't really go out as much as i could during the summer months, not that i get outdoors much now days anyway. Since the condition turned chronic for me i haven't really been able to get out much due to having regular attacks but at different times in the day . There is no warning of the attacks so i can't even plan in between bouts. It's not helping that i now have other health issues such as the hiatus hernia that causes me constant chest pains and chocking on my food and drink regular. I have just had an amazing appointment with the Gastroenterology specialists who have informed me that there is nothing more they can do for me. They an't operate on the hernia due to the position of it and i am on the correct medication i need to be on. So again its another condition that i will have to change my lifestyle and learn to live with. A pattern is starting to emerge as it seems lately i have things going wrong and when they do there is nothing any of the doctors or specialists can do to help me. Its really starting to become annoying and very depressing.
My walking is still very bad and if anything is getting worst each week. I can no longer walk more than 30 seconds wit out severe pain up the back of both of my legs start and then spread to the entire legs and up my back. Across the base of my back like a line and also up the left side of my back and into my neck. This pain is really bad when it starts and i have to take the weight off my feet and back before it will start to ease, Even sitting in one position for long periods of time is becoming more and more painful and i really don't know what to do. I have been back and fore the doctors and they are stumped! They haven't a clue what could be causing it. They say its possible i have a damaged nerve in my neck and that's whats causing all the other pains down my back and down my left arm. i have had an MRI on my neck and spinal cord at the top to see whats going on as my neck is in constant pain all the time. They still haven't had the results back so its a frustrating wait to find out if anything can be done. If they tell me i have another problem that they cant help me with will drive me over the edge. I know i have a problem in my neck and i know its effecting my walking and daily life but as to how bad the problem is i just don't know at the moment.
So much for pain free days, my pain free days are days with out attacks as i still get pains from my back, legs neck and chest during these days. I have actually forgotten what it is like to have a day with out any type of pain at all. if i did i think i would end up in shock or panic there was something wrong if i couldn't feel the pain. When i set out to fight this condition with every ounce of strength i had i didn't realize just how bad things would become at times and didn't realize i would end up with several health issues. I didn't know what else to do, i didn't want to lay down and give in thinking WOE is me and wanted to try and get on with life as normally as was possible. This condition has taken my life away from me , i don't go out, i cant socialize, i cant visit friends due to fear of having attacks when out and about. I can't have a relationship and women get to scared of the condition and then when they look at me , what future would they have with someone who is chronically ill most of the time. Cluster Headaches as they are called are not just a normal illness or condition as it strips you of all the quality of life you are used to when growing up and living normally. It destroys your self confidence and makes you live like a hermit afraid to go out in the cold air in fear of attacks coming. This illness is one of the loneliest illnesses i have every known.
No matter how bad things get i always try and say to myself there are people out there worst off than you , people who don't have long to live due to terminal illnesses and at least i have a life. Even though, i do wonder sometimes if this isn't worst than being in prison for life sentenced to death by slow painful suffering. All i can do is just to keep on pushing through, when i feel down try and find things to pick me up, when i am in pain just try to deal with it as best i can . I still have my fishing , even though i don't get out as much as i would like to. At least its something to keep my mind off my illness and something i can look forwards to. Being on the bank of a lake or river, watching the world go by, listening to the water and the wildlife whilst waiting for the fish to bite is my little piece of heaven and something i can still hold on to. Even with the colder weather now arriving and my attacks increasing i can still get out and do a bit of fishing, if the beast attacks i can lie back in the bivvi, take my injection and wait for the pain to end and then just carry on. No one can see me in the bivvi so having an attack on the bank doesn't bother me but i would still rather be fishing with out pain. Lets hope i can get a few trips in before the weather really becomes to cold to do anything.
