Getting out in the Sun did me the world of good!

Well finally i managed to get out and do a bit of fishing despite having attacks from the beast wake me up every morning in the early hours. After suffering for months i decided to just get out and enjoy a bit of sport while i can and i am really happy i did. Getting lots of fresh air and sun seems to agree with me and i am feeling a lot better than i have been for quite some time. I decided on going for 48hrs non stop fishing with my friend John down at my local lake and we had a great time catching quite a few large Carp. I just wish it lasted longer as i really did enjoy myself despite getting sun burnt as we were caught out by the weather. It had forecast cloudy days and windy patches with a storm on Wednesday night but it suddenly changed and we ended up having a small heat wave for 2 days.

The sun was so bright and strong that despite me making sure i was covered up i still ended up catching the sun badly on the back of my hands, my ears and my neck. The constant heat also brought on attacks whilst i was fishing and i ended up having to take my injections twice. I just sat down in my bivvi (tent) and too the injection and waited for the pain to ease and then returned to fishing as soon as it had gone. I was quite surprised to actually get an attack when i am fishing as normally they tend to stay away but i think it was down to the heat that they started. I was making sure i drank plenty of fluids during the hot days so it wasn’t because of lack of water that's for sure as i even made a friend bring me extra water down on the second day.

The fishing trip did me the world of good and my body seems to have returned to normal for five minuets. My bowels are working normal again and the stomach pains and allergic reaction symptoms have stopped. I am still getting pains in the lower back and when i walk my legs are still burning and my muscles in the legs ache like nothing has ever before but its an amazing improvement compared to a couple of weeks ago. I still didn't work out what  was causing the allergy and can only think it was the thrush i caught in the mouth from smoking damp tobacco that could have caused it all. I am just happy that it has all calmed down and i am now praying that it stays like this for a while.

I am getting less attacks than i have had for years and i feel a lot happier in myself. The fishing therapy really did work for me this time so i can’t wait to go out again. Only 2 weeks away from my birthday so i am planning on a couple of days sessions before i go out for another long 48 – 72 hour session again. If my health continues to improve then i have to keep this up and get out as much as i can this year. I just hope that the walking , back and legs also start to improve as it is still painful to move around but no where near as bad as it was. Thank God!

You begin to feel well and something runs up and kicks you square in the plums….!

Just when you think you got things figured out something else comes along and kicks you square in the plums. After suffering from an allergic reaction for months and having major problems with my bowels not to mention the early morning wake up call from the beast i finally though things were on the mend and my heath was starting to improve. I started to feel a lot better and even the attacks are very few just lately so i began to think i am finally on the upward slope until i decided to get out for a bit of fresh air and exercise.

As i don’t get out much since the attacks began over 10 years ago my health has been going down hill rapidly and i have been in a constant fight to stay pain free and get over many different health problems. Now suffering from a hiatus hernia, IBS and cluster attacks i thought it was about time i made the effort and get out in the fresh air and hopefully that would help to improve my condition and help me to fight the remainder of my illness. I decided to take a walk down to the local lake that is about 20 minuets brisk walk from my flat down hill. They were holding the first stage of the Welsh Carp Championship fishing competition at the lake and as i love my fishing it was the perfect excuse.

I set off early in the morning making sure i had taken all the medication i needed for the day and also some injections just in case of an emergency. I also popped to the shop and bought some orange juice and a bottle of water to make sure i had plenty of fluids with me to drink and in case i needed to take a pain killer. As i walked down to the lake i had the usual back pains from the lump i have in the lower left of my back and the sharp pain running up the side of my back towards the neck. It wasn’t anywhere near as bad as it usually is so i was grateful and it wasn’t long before i was at the lake enjoying the brief break in the weather and the fresh air. I stayed for a couple of hours chatting to a couple of friends of mine that had entered the competitions and just after lunch i decided it was time to make my way home.

As i started to walk back to my flat along the country lane leading away from the lake i noticed i was starting to get pain in both of me feet at the bottom and this started to spread slowly up to my calves. I didn't think much of it until i was 10 minuets into the walk back and the pain became severe and spread right up to my waits in both legs. The pain was so strong that i was pouring with sweat even though it was a cold day. I continued on thinking to myself just get home and then you can rest so i pushed through the pain and it wasn’t long before both my feet and legs were on fire. They actually felt like they were burning and could hardly take a step. I ended up stopping and thinking how on earth am i going to get home i am in the middle of nowhere and i couldn’t walk another step.

I decided to sit and rest for a while to see if it would ease but it didn't and then the inevitable happened and an attack started so i had to take an injection. Now i was in agony trying to deal with a full on cluster attack and also staggering up the lane trying to walk with legs in just as much pain as my head and my entire body felt as if it was on fire. I actually thought that this was it, i was about to die and there was nothing i could do. At that moment as if by miracle i saw the son of one of my neighbours with his mate flying up the lane on a scrambler and when he saw me holding my face and staggering almost falling over he suddenly stopped and asked was i ok, i replied no and was about to collapse and have a major attack.

He then threw his mate off the back of his bike and told me to get on and hold on tight. He then ripped up the remainder of the lane to the main road and despite risking being arrested as you shouldn’t ride a scrambler on the main road he drove straight up the street to the front door of my flat. I couldn’t thank the boy enough as i ran inside the flat and collapsed on the sofa in immense pain. I really don’t know what i would have done if he hadn’t have come along that day and i still believe i don't think i would have made it and could have died as the body was in such a state for quite some time afterwards. Why this suddenly happened i don't know but believe it is due to blood pooling in the feet as i now have to sleep on a slope with my feet downwards all the time meaning that my circulation isn’t getting the chance to relax at night when i sleep. When i described the symptoms of what happened to my mate who has a similar problem with circulation problems he said yes that is what had happened.

He now recommends that i now sleep with my feet up in the air for a while until i get back to normal which means due to the hernia i now have to sleep in a V position. It does sound awkward and uncomfortable but i did this last night and managed to get more sleep that i usually do so there must be something in what he says. I will now make another appointment with the doctor and explain what happened and confirm my findings jus6 in case it is the nerve that caused it and not the circulation. It took me 3 days to recover from my ordeal and still i have weak legs but they are now getting better since i started to lay with the feet up in the air and the swelling is now going down. Talk about a scary experience. I have been through a lot of things ever since my diagnosis and the attacks started and several time i thought i was going to die.

People think that i am being over dramatic when i say i thought i was going to die but i would love to see them live one day in my life with what i have to go through. To be honest i would rather be diagnosed with a terminal illness and know i was going to die at some point rather than knowing i am going to have to suffer like this for years and years until one day the body just wont be able to take it any more. Not knowing what will happen from one day to the next is so depressing and stressful i think its worst than knowing you are going to die. I wouldn’t see an animal suffer as much as i have over the last few years and as i joke with my friends and say if i was a horse they would a shot me, a dog they would have put me down or a car i would have been scrapped by now. I just pray to god that things start to look up soon and i can start to feel well again but my future is in his hands and his alone.

Just when you feel better something comes along to mess up your day…

Just when you think you are starting to get well something else comes along and causes you to become ill or at least feel like you are ill. I am still getting early morning attacks and daily visits from the beast making me have to deal with pain on a daily basis but after having dealt with these for a few years now it has started to become the norm. I can’t remember the last time i had a day where i had no pain what so ever. I thought i had finally beaten the allergic reaction i was getting as the symptoms seemed to ease off gradually and i started to get the thrush in the mouth under control. I think i could have been the actual thrush that was giving me these allergic reaction type symptoms but its really hard to say that it is definitely the cause.

As things have started to improve and i have been starting to feel a lot better the last few days now the mouth is starting to play up again and starting to feel sore inside just as it did when the thrush first started. I am still using mouth wash and an anti fungal oral medication to keep treating it but for some reason it seems to be getting sore again. Not only a,m i having problems with my mouth getting sore but also pains in my back have started to become severe. Sometimes i think it could be the kidneys but there is no sign of infection at all and then sometimes it feels as though its a little to high up for it to be kidneys so i assume its something to do with the muscles. It could also just be down to wind again travelling around the body as i seem to get a lot of that just lately.

I have done a lot of research with regards to the hiatus hernia that i now have and found out that for some reason, due to an imbalance in the acid levels the body produces, i am now going to suffer from different types of fungal infections. This explains where the thrush has come from and why it has been so problematic. It also tells me that i will also suffer from allergies that i never had before so i can now understand where the allergy symptoms have come from. I also read that for some reason the hiatus hernia also causes a lot of back pain especially in the lower back region and can cause a lot of wind build up.  It seems that every symptom listed that the hernia can cause i have been suffering with.

I am grateful that the amount of attacks i normally get from my condition has reduced to a level that i can now manage on a daily basis and that due to the warmer weather i am finding that i can remain pain free during the day time and only have to deal with the attacks late at night or in the early hours. I know it can become annoying being woken up early every day but it a lot better than having to deal with up to 8 big attacks every day. I have started planning my first fishing trip of the season as the local lake by me has now re-opened and i have decided i will be gong for 3 days fishing with one of my mates and a couple of others will join us when we are down there. I am hoping that the weather holds and that we have 3 days of half decent weather so i don't have to deal with the beast too much whilst i am camped on the lake bank. I am really looking forwards to it as its been a while since i last when i am dying to get back out in the fresh air and the sun so fingers crossed all will go to plan.

As the weather changes the attacks begin….

We have been lucky as far as the weather is concerned so far this spring as we have been rewarded with an early summer and some brilliant sunshine. Unfortunately this doesn’t  improves my situation as far as cluster attacks go. As soon as we have a slight change in the weather the attacks begin and once again i am being woken up in the early hours of the morning. Every morning at 3 or 4am my eyes open wide and i know instantly why i am awake and for some reason i never seem to feel tired when it happens. Normally when you wake up you still feel tired until you are fully awake but when you are woken by the beast with its gift if pain you are always wide awake and feel as though you haven't slept at all.

Since i was diagnosed with a hiatus hernia i have  had to have my bed at a strange angle so i don't build up stomach acid in the chest area during the night when sleeping. This used to cause my head to be at an awkward angle and cause my neck to be in pain all the time. In the end i had to get a new bed and have the base of the bed risen at 35 degrees so that the mattress lays flat even though its up at an angle and this will help to reduce the strain on my neck at night. The pain in my neck started over 2 months ago and has been gradually getting worst as time goes on but when i got a new bed it started to improve. Now all of a sudden its started to get bad again and seems to coincide with the strange allergic reaction i keep getting.

I have been back and fore the doctors every week for the last 2 months complaining about nettle rash and sore mouth and painful neck that ahs appeared for no reason. I have tried everything i can think of to identify what is causing this reaction but nothing seems to stand out. I stopped anything with wheat in and also dairy products in case i suddenly become intolerant to these foods. I stopped different medications and different drinks in case this was setting of an allergic reaction but still nothing seems to change it. I ended up with thrush inside my mouth and on my tongue and believe me when i say that is a horrible thing to suffer from. I ended up having 3 different treatments over 5 weeks to try and get it under control and only now in the sixth week we have finally started to get rid of it.

I am still getting mild allergic reaction symptoms form god knows what but it has started to get a little better and it is possible that it could be the thrush causing all these strange symptoms. I am hoping now the thrush is starting to go and i am slowly feeling better that the rashes and sore mouth and pain will start to ease and i will get back to my old self again. I am grateful that my cluster attacks seem to be behaving themselves and haven’t increased in quite some time. I am only getting 1 or 2 attacks a day and now have more pain free days than ever before so i am trying to make sure this doesn't change and i don't do anything to aggravate it. The neck pains i keep getting does sometimes set of attacks when they become severe but i know when that's about to happen and i am able to prepare myself with my injections in order to abort the on coming attack.

Now, thankfully, as the warmer weather is here i should get less and less attacks each week and should start to feel better now that i am getting things under control. I don't want to speak too soon as i know from experience this can suddenly change over night and i could end up really ill once again. I am hoping that as i am feeling better i will be able to start getting out and about a bit more now and should be able to enjoy the sunshine and even get some fishing in this year. I missed out on a lot of fishing last year and it really drove me insane watching others getting out catching fish and i just couldn’t do it myself due to the levels of pain i was always in. So fingers crossed this will be a good year for me and you will find me on the river or lake bank real soon.

Everything is becoming too much to handle ….

Again i have been suffering from early morning wake up calls from the beast at 3 am or 4am. You would think as the cold is the main trigger for my attacks that when the weather starts to warm up the attacks will reduce and stop. This isn't the case unfortunately as even the smallest drop in temperature in the early hours seems to aggravate my head and cause attacks to appear. It doesn’t help that i am still suffering some strange symptoms that are very similar to an allergic reaction and also a bad case of Thrush in the mouth and on the tongue. The doctor had given me medication that i had to swill around the mouth and then swallow to help get rid of it but the first dose didn't work and i was still just as bad a week later. Then i had a second dose of the medication that almost got rid of it completely but when i stopped taking the medication because i ran out within 2 days it was back again.

This time the doctor has prescribed me some strong tablets that is supposed to get rid of any type of fungal infection and said that this should stop the problem. Through research about my hiatus hernia i found out that i can now get fungal infections with great ease due to an imbalance that the hernia causes. It also says i can suddenly get allergies also which would explain all the strange symptoms i have been having. We still can’t work out what is causing these symptoms and why i feel like it is getting worst each week that passes. I also have severe pain in the neck on either side and this has now spread down my back on the right side and into the shoulder on the right both in the back and front and is so uncomfortable and painful its crazy.

It has now been 5 weeks since all this has started and i am no closer to a solution. I have tried everything i can think of. I have stopped dairy products and wheat products and even changes washing powders just in case something was causing the symptoms of an allergy. Also as my neighbour has cats and i had a couple of flea bites on my ankles i decided to fumigate the entire flat with a flea bomb to ensure that there could be nothing that was biting me causing the allergy.  After i bombed the flat i did start to feel a bit better but at the same time i stopped taking paracetamol tablets so it could be just a coincidence or maybe the paracetamol was also causing problems, i just don’t know. After a few more days i started to get ill again and for sure it can’t be the bites or fleas as the fumigation will kill anything that comes into contact with my carpet or furniture for the next 7 months to ensure i don't get any more bites.

As well as getting the symptoms come back my bowels have also decided to stop working so yet again i have to take more laxatives to get things moving again but i am sure its what ever is causing these symptoms that is also causing my bowls to suddenly stop working. Every time i see a doctor and tell them of the problems they just chuck more laxatives and medication at me and its really driving me insane. Why can’t they investigate it properly and stop all this messing about. Why someone should be in such a state and in so much pain in this day and age is beyond me. You would think with all the modern technology and medication they could do a lot better instead of leaving me to suffer all the time. Its bad enough suffering from the cluster attacks each day let alone all these other things going on. My back is in constant pain, my neck is in constant pain, my shoulder is in constant pain and my attacks are still everyday, although a massive improvement to what they were as i don't have as many attacks as i used to.

Due to the hernia i now have to sleep with my bed up at a strange angle and at first i thought the neck could be linked to that but now i have a new bed that has the base up at an angle so the mattress is still flat and doesn’t give me a crick in the neck so it can’t be that causing the neck pains. When i try and sleep on my back i get severe pain all night in both kidneys and also upper back and have to lay on my right side in order to sleep. If i try and sleep on my left side it ends up setting of cluster attacks so i am only able to sleep in one position all night. This is all starting to get too much for me to handle and i am struggling with the depression on a daily basis now. Its bad enough that i don’t get out of my flat as much as i used to due to the cluster attacks but at the moment i haven’t even managed to get out and go fishing yet. My local lake is closed at the moment so i can’t go there and the others are all too far for me to take my gear as i can’t lift as much as i used to not only because of the hernia but also due to the pain in the neck , kidneys and neck. I just wish god would cut me a break……..

Who needs an alarm clock when you suffer CH

Once again i am being woken up during the early hours by a visit from the beast. At around 3am or sometimes at 4 my eyes open and i am wide awake. Its feels strange as normally when you wake up you still feel tired and it takes a while for you to come around and wake up properly. When the attacks come its a different story. You are totally awake wondering if you been asleep at all and its not until you notice the time you realise what is about to happen. Your body breaks out in sweats and the pressure on the side of the head builds and the pain begins. Starting from the top of the jaw behind the eye and shooting over the top of the head on the left side and then into the neck at the back of your head. The pain shoots over so fast you don’t even get a chance to prepare your self and within seconds you are in total agony.

The left eye starts to close and water pours down your cheek and all you can do is hold your head in your hands praying for the pain to go away. The entire left side of the face starts to feel like its being melted away and stings with seriously high amount of pain. You rub the side of your face but every movement and every touch causes even more pain so you don’t know what to do. If you manage to get your injection in time then the pain will only last for around 10 minuets but those minuets seem like a life time. If you don’t take the injection in time then you have to ride the attack for well over an hour and by the end of it you are praying to god wishing for death to come and finally put you out of your misery. No matter how many attacks you have and how well you seem to deal with them you never get used to the level of pain i brings.Each attack seems to be stronger and more painful than before.

It doesn’t help the fact that i am still getting strange symptoms like i am allergic to something and that my bowels have decided to give up on me and i now have to take a crazy amount of laxatives just to be able to go to the toilet. I am getting really bad pain in both sides of my neck and this can also set off attacks during the day. At first i thought the pain was from me having to sleep at a strange angle due to having a hiatus hernia but now i have reset the bed and shouldn’t be getting any problems yet it seems to be getting worst each day. My stomach is swelling up every day and people say i am starting to look fat even though i am only eating 2 small meals a day. I am producing wind at a crazy rate and it seems to travel around my insides causing me sharp pain and discomfort. My throat is getting sore every day and as i am a smoker i find i can’t even smoke due to the soreness. In one way that's good for me as i am having to cut down but there must be a reason for all this going on.

Its driving me insane as when i see the doctors they end up giving me more laxatives. more antihistamines and more pain killers instead of trying to find out what is going on. I asked for a colonoscopy referral and was told that i had to be like this for at least six months on maximum laxatives before they will even think about referring me. Surely someone shouldn’t have to suffer or go through so much in this day and age. I thought medicine and medical practice had taken steps forwards not backwards. I feel as though i am being brushed under the carpet and left to rot. Every day i now have to fight back the depression and i am finding it harder and harder each time. I really don’t know how much more of this i can take, i just wish someone would help me.

How much more can the body and the mind take..

The last couple of weeks has been hell on earth. I thought suffering from the cluster attacks was bad enough but for some reason i am also getting what i can only describe as a severe allergic reaction to something that i can’t work out. Sore eyes, nettle rash on the skin, hot sweats and really bad pain in the neck on either side are the symptoms of something that is really screwing up my body. My bowels don’t work anymore with out the use of a lot of laxatives and even when i try and urinate it takes a lot of strain to empty my bladder. This just isn’t right. I have stopped dairy products and even wheat just in case it was something i was eating. I have also stopped coffee and tea and only drink water in case it was something i was drinking. Some days i feel as though i am starting to get better then all of a sudden i start to feel worst for no reason.

The pain in the neck is also setting off my cluster attacks so i am not only dealing with the effects of the allergy but also having to deal with the attacks themselves. I have never been in so much pain and discomfort all at the same time. I have tried everything i can think of that could be causing all this but nothing seems to stand out. I have even changed my washing powder in case it was that and am boil washing my bedding in case it is bed mites or something like that that could be causing the problems. I just don't know what else i can do. I am taking antihistamines to combat the symptoms but it only takes the edge off and i still end up suffering the entire day. I am also taking a lot of laxatives at the moment to keep my bowels moving so i don’t clog up again and end up in even more pain and agony. I even thought it was the laxatives themselves that i am having an allergic reaction to but even though i stopped for a couple of days it didn't make any difference.

All i can do is keep on persisting and hope that i find out the cause of it all soon. Every day i wake up it feels like its getting worst and my neck is becoming more and more painful to the point where i can’t even look over my shoulders now. Each time i go and see a doctor they just say they don't know what is causing it and give me more tablets but it doesn’t help. I feel as if i am being pushed aside and they don’t care what happens to me as i am ill anyway. I will see if things improve today but if they don't i will have to make another appointment and see the doctor again tomorrow and try and demand they do something about this but i know they will do exactly the same thing as before and tell me to wait for tests and give me more tablets to make me feel even worst. All it would take is an allergy test to see what is causing it and i don't understand why they don't do that as they used to do it when i was a child.  Maybe they don’t do those tests anymore, i just don't know.

I really don’t know how much more of this i can take/ Not only do i feel really ill but it is causing my depression to drop really low and i find myself in tears most of the day for no reason feeling sorry for myself all the time. I seem to be getting more aches and pains all over my back and sides worst than i have ever had but no one seems to want to help me and now i feel lost with no where to turn. Its really hard to try and keep a positive mind at the moment and i am trying to keep busy and keep my mind on thins that i enjoy but i can’t even get out and go fishing at the moment as i am just to ill and in too much pain. Please God Help Me!