I refuse to give in to the beast……

Another week full of aches, pain and agony brought on by constant attacks in the early hours. Not only am i suffering from the cluster attacks but also from an hiatus hernia that is causing me so much discomfort its unbelievable. Every morning i wake up full of acid in my throat and this is due to when i sleep flat on the bed. If i raise the bed up at an angle like the hospital recommends i end up with pain in my neck from sleeping at a funny angle and no acid in the throat. No matter what i do i just can’t win. On top of all these problems i am having an allergic reaction again to something that i can’t work out. I have tried stopping different things and nothing seems to ease it and everything seems to aggravate it. Surely i can’t be allergic to everything?

I am getting nettle rash on my arms and face and a sore mouth at the back as if there is something stuck at the back of the throat. I am al;so getting sore lips and really sore eyes and am having to take antihistamines on top of all the other medication i am on. To top all this off i am having murder with my bowels, once again i am unable to go and open my bowels due to extreme constipation. I am having to take 3 different types of laxatives just to get the bowels moving so i am starting to wonder if its the bowels that is poisoning me and causing the allergic reaction type symptoms. All i can do is continue to take the medication and pray to god that it eases off soon. I spoke with my doctor the last time i saw her when i reported all this going on and asked to be referred for a colonoscopy to try and find out what is going on with my bowels as i have now been suffering with the constipation for over 2 years and it seems like its getting worst all the time.

I was informed that i have to be on a maximum dose of laxatives and still unable to open my bowels normally for over six months before the hospital will accept the referral. Surely this is crazy. OK i agree that my bowels are moving with the laxatives but i am still having serious problems. I am getting constant pains in the stomach and bowel area and feel like i just can’t push anything out. It honestly feels like the muscles just isn't working and i cant bare down like i used to be able. The same when i pee, i can’t stand up and go like a man can normally i have to sit and relax until i feel something start to come out and then slowly push but if i push too hard it stops and i can’t go. All i can do for the time being is soldier on and hope it doesn’t get to the point where i do need treatment and end up in hospital.

I am trying my hardest to stay positive and keep saying to myself there are worst people out there than me but sometimes i really think it isn’t going to get any better and things are slowly moving down hill with regards to my health. I am trying to focus on my fishing and for the last couple of months i have been preparing and getting all the equipment and tackle i need to have a busy summer specimen fishing and get out in the fresh air a lot more. I am now waiting for the weather to change so i can go fishing for the first time this season which is hopefully this Monday coming. I don't care if i am still getting these crazy allergy symptoms i am still going to get out as i am fed up wit this illness trying to rule my life and i refuse to give into it. Lets hope i can keep strong and fight as much as possible so i can enjoy my fishing this year.

How much more punishment can the body take..

Yet again i have been neglecting my blog not due to laziness but actually due to illness once again. Both sides of my neck suddenly became painful and i was so run down i couldn’t find any strength to do anything. I also found i had loads of small blisters on the back of my tongue and my mouth was becoming sore. I decided to make an emergency appointment to see the doctor but my normal doctor was unavailable so i had to see the locum. I reported to her what was wrong and with out even examining me she said i had some sort of virus and prescribed antibiotics to me. I think this is crazy using antibiotics as an answer to unknown illnesses, surely she should have done a proper examination.

Well i started the antibiotics on the Monday and by the Friday i was 100 times worst. I was so ill that i was passing out on my feet. I had no strength , i could hardly swallow and i kept burning up every now and again. My neck was so painful on both sides not only did it keep setting off my cluster attacks and was also unable to move my head from side to side. I decided to ring NHS direct who advised me to see the out of hours doctors on Saturday so i went down there and was shocked when they decided to send me to hospital. The doctor that examined me thinks i had one of the worst bouts of Flu she had ever seen and was coming to the end of it but my heart rate was very high and she was worried so made an appointment at the hospital for me.

My mate Brian rushed me to Llandoch Hospital just outside Barry in Wales, and i was taken straight through to the emergency examination ward where they asked me the important questions and gave me a quick examination. I was then rushed down to x-ray for a chest and neck x-ray to make sure something more serious wasn't going on. The doctors were confused and didn't know what was going on. My bloods came back OK and there wasn’t any sign of infection or problems, my x-rays came back clear so they started to do other tests and consulted other doctors to see if they could find out what was wrong. At one point i scared the doctors and nurses half to death as my heart rate raced up to between 150 and 200 bpm and set off every alarm in the ward. I have never seen so many medical staff rush to my bed side and suddenly i was feeling like a pin cushion as they were taking blood and giving injections and putting lines in.

After a few scary hours i started to calm down and my heart rate returned to a steady pace although still fast but that was probably down to the pain i was getting in my neck and the ill feeling i was having. My skin on my forehead and under my eyes felt as though i had sun burn not to mention my eyes were extremely sore. The doctors came to the conclusion that i may have had a nasty virus or an extreme case of the flu but had gotten over it as i was no longer showing any signs of infection and they put the neck pain down to muscle spasms. The soreness in the mouth and the ulcers on the back of the tongue are from thrush, a sign of being run down or recovering from illness and gave me some mouth wash medication to deal with that. They prescribed me 3 days of diazepam to help relax the muscles even though i told them i shouldn't take those sort of drugs but they insisted and said they would write to my doctor to let her know what had gone on.

I am still getting over what ever it was that caused all these things to happen and i still have sore skin and mouth every now and again. My neck is still in pain and i can’t move it as much as usual but its a lot better than it has been for the last couple of weeks. As to what it was that started all this i don't know and the doctors are still investigating but i can tell you one thing for sure, i will make sure i have my flu injection next year instead of missing it like i did this year. It just goes to show how important those injections really are/ As to what else is going on i am clueless and just hope that i continue to get better over the next week as i don't think i could cope going through all that again.  It bad enough having to deal will the cluster attacks every day and all the time but to have other illness on top just drains all of your energy. How much more can my poor body take… only time will tell….!

There’s no rest from the beast…..

Who needs an alarm clock when you suffer from the same condition as i do. CH is one of the worst illnesses i have ever come across and one that there is no cure for and very little is known about the illness. When i was first told there was no cure and only medication to help it go into remission i have to say i was shocked and speechless. I still find it hard to believe that there is nothing they can do and that i will suffer from these attacks for the rest of my life. I am grateful for the medication i have been given and the injections as they are the only things capable of stopping an attack when it appears. When you are being woken up every morning due to the drop in temperature setting off attacks all the time it is very hard to think positively and trying to stay focused on something other than feeling ill all the time is almost impossible.

Over the last couple of weeks i have been getting regular attacks in the early hours especially when the weather drops and the morning starts of frosty and cold. I have also noticed that i am getting a lot of unexplained pain in my neck on both sides. The muscle on either side seems to be aching constantly and due to the pain it keeps setting off attacks during the day. After each attack it seems like the ache and the pain in the neck is getting worst and it has now got to the stage that it is starting to worry me as i can’t move my neck with out it causing me pain. Maybe there is something else that is causing it like a head cold or a chill to the neck but what ever it is is causing me problems so it looks like i have to go back to the doctors once again and ask for help.

The last few years it seems like i have been a regular visitor to the doctor with all sorts of problems appearing in my health. Everything from bowel impaction to a hiatus hernia have all been diagnosed over the last couple of years and it feels like my body is becoming a complete wreck. No matter how much i try and exercise and  keep moving i just can’t seem to shake the problems. It doesn’t help that i am shut away in the flat all the time as i can’t go out due to the cold at the moment and i have to wait for the weather to warm up before i can become active once again. Last year i missed out on a lot of fishing which is the only sport i really enjoy and also my main hobby. Due to me being in pain and having the hernia it made it almost impossible to get out and about. This year i am determined to make up for it and get out in the fresh air as much as is humanly possible or as much as i can afford as fishing doesn’t come cheap.

I have been spending all winter preparing and saving up for fishing tackle that i wanted and now i have everything ready to enjoy this year down at the waters edge catching me some monster fish. I will be able to take my medication with me so if i do have an attack i will be able to sit in my bivvi (fishing tent) and take my injection with out people watching me thrash around in pain. Once the attack is over i can go back to my fishing. This way i should be able to get out a lot more than i did last year. I just wish there was some way i would be able to take my oxygen with me as that helps to reduce the time an attack lasts. They have portable oxygen units but i don’t know where to get one or whether i would be allowed one. I will have to speak with my doctor and specialist to see what i can do.

I have noticed lately that my depression has been getting a little worst and i find my self low and depressed a lot more than normal. I don’t know if i will need new medication or if its just because the attacks have been so regular just lately but again i will have to speak with my doctor to find out what we can do as i find myself in tears most of the time for no reason. I can be sat watching something on TV and all of a sudden i break down and start crying and i can’t think why i would be crying but it just happens. It’s amazing how being ill can take so much out of you and leave you drained of energy all the time especially when you are in pain for most of the day. One thing is for sure i will keep fighting as i refuse to give in to the beast.

The pain is really getting to me…

Every morning this last week the weather has started extremely cold and frosty and due to this my head has been playing up worst than ever before.  I can’t remember the last time i had so many attacks during the early hours. Starting at around 3am it all begins and not just one attack. Several attacks one after each other meaning i am unable to use the injections to abort them and have to ride each attack out. This leaves me in agonising pain and even after the attacks have finished i am left with a very painful neck. When i try and turn my head, even a little, the pain shoots down either side of my neck and into my back making every little movement agony and uncomfortable.

It doesn’t help even if i try and keep my head still as it starts to ache and then it can bring on another attack. I have tried everything i can to avoid an attack building but nothing helps. I take pain killers to try and ease the aches and pain but they just don’t seem to work. I am keeping my flat lovely and warm but even that doesn’t have an effect and the attacks keep on appearing i really don’t know how much more of this i can take. The sweat keeps on pouring off me and although i am warm i end up getting cold shivers. Its really starting to drive me mad.

I have experienced many types of different CH attacks and they have been brought on by so many different things i can’t tell exactly what sets them off apart from the cold is my main trigger. I also think it has something to do with the weather as when there is a low pressure system moving over us the attacks become worst and i always end up in pain. No matter how many attacks i have i just can’t get used to them or seem to control them and i am sure they are getting worst even though i am having less during a 24 hour period. I am praying that as the season begins to warm up the attacks will begin to ease again.

I am also still getting big problems with my bowels and my hiatus hernia seems to be playing up all the time. Its starting to get to the point where i am scared even to take my medication in case it starts to cause me even more problems. Just when i think i have things under control something else comes along and causes everything to play up. I am trying to stay positive at the moment but it is very hard as the depression is really getting me down. If it continues i am going to have to go back to the doctors and ask for more help once again and see what else they can do. No doubt it will end up being more medication and more side effects to contend with, i just feel i am fighting a loosing battle sometimes.