I actually managed 4 days with out having an early morning wake up call from the Beast. Then at 3 am this morning it decided to attack. I woke up feeling wide awake and it took me a good 20 seconds to realise i was awake and then another 30 before the attack and pain really started. Again it felt like someone was trying to pull my left eye out of the socket using a spoon. The sharp pain over the head and into the neck becomes so bad you pray for god to end it all. You wonder why you are like this and why is something torturing you all the time. It’s pointless trying to take pain killers as i have learnt, the hard way, that nothing touches the pain. There isn’t a drug that has been discovered to help mask that level of pain.
When i last spoke to the specialist we both agreed that you have to stop the attacks from happening in the first place in order to deal with the pain. If you don’t have the attack in the first place you won’t have to put up with pain all the time. The trouble is that no one person is the same and it can take a combination of drugs to put the attacks to sleep and what that combination is will only be found out through trial and error and basically using me as a test subject for the medication trials. Hopefully they will then find the combination my body needs and maybe i will get my life back, what's left of it.
It looks like a day of having to put up with the sharp back pain all the time and the walking problems as my legs feel like lead again and my bum is numb making it feel like i am sat in a hole. This has been happening a lot more regular than before. I would used to get these problems with walking and sitting about once every couple of months and just like the attacks they are starting to increase and becoming a daily problem just like the head attacks. The injections i take are great for stopping an attack in its tracks and aborting them just before the worst pain comes but they have no effect on the rest of the pain like in the back and chest and especially from wind.
Again i am filling up with wind again. I seem to be ok first thing in the morning as i must pass wind during the night when the body relaxes. Then when i wake up the wind begins to fill and by the end of the day i am bloated and full of hard painful wind bumping into my internal organs causing sharp pain and stabbing pain all over the place. I am starting to get used to having the pain all the time, sad i know as i shouldn’t have to put up with it and something should be done to ease it, and have developed techniques as to manage the pain and put my focus on something else. The one thing i can’t get under control or put up with is the amount of wind i keep producing and then having to battle each day to pass it in order for the pain to stop for a while until it builds up again. It’s driving me absolutely insane, if its not the attacks disabling me its the severe wind and IBS, I can’t win!
