Friday:
After a couple of days rest, including staying off the computer, my chest is finally starting to feel better. I still get a sharp pain every now and again to remind me that i had a problem but it seems to have calmed down so the ibuprofen must have done the job and i am starting to feel better. Unfortunately i am still being woken by the beast in the early hours and end up staying awake as i just can’t get back to sleep with a sore head and neck. The attacks i have been having over the last couple of days have been real nasty ones. I always end up with my eyeball feeing like its about to explode and the left side of the head feels like it has been split open. When i run my hand across the left side of the head i can feel a swollen line from the forehead right back to the neck, This must be the nerve that is causing all the problems and it must be swelling up when i get the attacks.
Thankfully it’s only a couple of days until i see the specialist Mr Pickersgill. He actually suffers with the same condition as me apparently but has his under control with medication but still has his bad days. It has been almost a year since i last saw him and i have loads to tell hi and update him as to what has been going on with me. I never knew someone could have so many problems over such a short period of time. Even the nurse i saw at the hospital regarding pain management said i had been through the mill and my chemist said if i was a car they would have scraped me by now. I have to admit 2013 was a year that i would rather forget apart from my fishing as did have a great time when i was out fishing last year but the rest i can forget. I am hoping that 2014 will be totally different and i will start to get this condition sorted and under control. Let’s see what the specialist has to say and what medication he will try next.
I have had to put my fishing on hold through December 2013 and January 2014 due to my head being so bad. It’s a shame as December was quite mild and i could have got out and did a bit of winter carp fishing. January has turned nasty with the storms we had at the beginning causing terrible flooding across the country and making it impossible for fishing. The winds were also strong at the start of the month and have only just started to calm down but the cold has decided to pay us a visit and most mornings are now a frosty start to the day. The temperature drops during the night and the early hours and that seems to start my attacks so imagine if i was out in a tent night fishing. I think i would end up having quite a few attacks and would spoil the fishing trip. My self and my fishing partner John are hoping to get out during February as long as the frost clears a bit but we could end up waiting until March before we manage to get out and start our new fishing adventures.
I sometimes wonder if i will ever get these attacks to stop and get my condition under control as i feel although the attacks are not as many as when they started ,due to the medication i am now taking and the injections helping me to cope with the painful attacks, i am getting worst. The attacks seem to have become stronger and also spread over my head and down the back a small distance. Just under the shoulder blade. Its not quite all the way down the back but i fear that it will eventually be right down the left side of my body and when i have an attack it will be so painful it may end up my last attack ever. The amount of times i have had an bad attack and actually though that my number was up and i was going to die i cant remember. I have even had them bad enough to make me pass out as the pain level was too much for the body to bare and has made me loose consciousness for several minuets. It’s not until i read back over my blog that i realise just how many attacks i have had and how many times they have been really nasty ones. I don’t know how some people can live with this condition. I can understand the ones that only have a couple of attacks a month and can live normal lives but what about the others that have to deal with them almost every day? how on earth do they manage? and where do they get their strength from because mine is fading fast.
Saturday / Sunday:
I am still getting the early morning wake up calls despite taking as many precautions as i possibly can. I even take a woolly hat to bed with me so if i get the cold feeling around the top of my head i put it on and hope it will help to keep away the beast in the early hours. It doesn't always work but has made a big difference to how many mornings i do get woken up so it must have some effect. I have known for a while that the cold weather is one of my main triggers and that it can differ from person to person so what my stop my attacks might actually set someone else off. Keeping my head warm seems to work wonders for me and helps to keep away a lot of the big attacks but i still get the really bad ones. I have to admit i didn't think it would work and when i was also put on the Pregabilin tablets i had my doubts then. Thankfully although i have had to half my dosage due to side effects of the drug i have still managed to half the amount of attacks i get. I am now hoping that with the meeting i have with the specialist on Monday we will now be able to try a different approach and hopefully some new medication that will help me to deal with this monster and even put it to sleep for a while.
I have to say that i am a bit nervous of seeing the specialist as the last time i saw him it was mostly bad news. Being told that you are suffering from a rare condition that there is no cure for and not much known with regards to the treatment was an awful lot to take in at the time. It has taken me over a year to accept my future and has taken me a while to get it to sink in. I think out of stubbornness i didn't want to accept that there was nothing they can do about the attacks and the pain and for years i was running around trying to treat the pain instead of the cause of the problem, mind you it didn't help back then being told it was all in my imagination and no one can suffer with such pain all the time. Now that the doctors have witnessed the attacks and i was finally referred on to the correct person, my specialist, i am now getting the treatment that i should have been getting over 10 years ago. The last 2 to 3 years have been hell as that is how long my attacks turned chronic and i now get daily attacks apart from the odd day here and there where i manage to get a break from the beast and am able to recharge the batteries and regain my strength.
Unfortunately i am still suffering pains in the chest area and now i have had to stop all stomach medication as the doctor believes i could have a rare stomach virus that can only be caught abroad and in some rare cases in the UK. Apparently this virus comes from chicken. Mainly barbecued chicken for some reason. One of the most favoured dishes in Cyprus used to be the spit roasted chicken and i am assuming if i have the virus then that is where it has come from. I will be having blood tests on Thursday so they can see if i do have this virus and that is what is causing all the pains and a feeling like you have constant indigestion. If my tests are positive it will mean i will have been suffering with this virus for well over 10 years and would explain for a lot of strange thongs that have been happening to me.
