More wake up calls from the beast!!

Once again i have been woken by the beast in the early hours. 4 AM on the dot the eyes open and the sudden feeling like something is about to happen. The realization that you don't feel tired and that you are wide awake which can only mean one thing. As you suddenly jump out of bed and rush towards your injections and the pain starts and shoots over the top of your head. Before you have even got the injection in your hand you are in extreme pain and your left eye has swollen and is pouring with tears. The left side of the face reddens and the eye and cheek droops and the constant sharp pain grinds deep into your brain. A Sharp line shoots over the left of your head as if someone had taken a ruler and cut cleanly with a sharp blade deep into your skull. The pain starts above the jaw on the left of your face and runs over the entire head into the back of the neck on the left side at the top of your shoulder. The pain effects not only the head but also causes spasms and pain to shoot down the lower left side of your back not to mention the aches and pains after the attack has finished.

Once you have taken your injection all you can do is hold your head and cry and pray to god for it to take effect or if that don't work then to stop the pain and put you out of your misery. The pain is at a level where sound becomes muffled and the smell of electricity is in the air. You feel like you are on the edge just clinging on to life by some unknown miracle and wish for it to stop. The pain just feels like it is getting stronger slowly and that there is no end to the level of pain you are going to get. Suddenly as if someone has switched a small switch in the side of your head it stops. No pain all gone. The injection has worked and kicked it. You know for sure it is the injection that has stopped it as the chest suddenly tightens and you become short of breath for a few seconds and then it begins to ease and the attack is gone. Unfortunately due to the pain level and the amount of attacks i have had the nerves in my upper back and shoulder are also damaged and the amount of pain i get in my upper and lower back after an attack is a big issue in itself. 

I have had to deal with these attacks for well over 10 years now and can honestly say they never get any easier to deal with and i sometimes think they are getting stronger as time goes on and its only leading to the inevitable. The one attack that i wont be able to handle or recover from. The on attack where the pain becomes so much that the body and mind will just say no more. I sometimes wonder how much pain the human body can be in at times and think surely there must be a point where the body and mind says it just cant take any more and switches off. God only knows when that point will come and i am just grateful that i do now get some pain free days even though they are few. I still get attacks every morning and can sometimes go weeks with very little sleep and end up really run down but i think about all the people who are worst than me and i struggle on.

I can now deal with 2 attacks per day with the injections so i am finding i am having more pain free days as we call them due to not having to deal with full on attacks for hours on end. At least my attacks have reduced and for now i am getting some sort of break but i know the luck wouldn't last and that the beast would have to return. I am not getting out as much as i should and find myself shut away in my flat all the time so i am really trying to make the effort top get out and do some fishing over the next couple of months while the weather is good as i can cope with the attacks better when its warmer. I am hoping the weather holds and my back doesn't start playing up or something else to come along and spoil things. I have my 6 weekly appointment with the doctor tomorrow so hopefully we can discuss a solution to my sleeping problems and see if i can rest more at night so i have more energy during the days to do things. Fingers crossed the beast has gone back to sleep for the rest of the day and i wont get a visit till the morning

Just when things start to feel better the beast returns...

The last couple of years had been bad when it comes to the amount of attacks i was getting on a daily basis. I was averaging up to 8 massive attacks in a 24 hour period and it really started to take a toll on my health. Then when i started on different medications i went from just suffering from the condition to also suffering from the side effects of the medication and although my attacks decreased i was still becoming very ill all the time and found myself getting cut off from the outside world because of my illness. I started back up fishing again as it was one of the only sports i really enjoyed as a young lad and found that it helped me to focus and keep my mind off my health even if i still had attacks whilst fishing i was able to deal with them and continue as soon as the attacks were finished. The last year my cycle seems to have returned and rather than continuing to have a high amount of attacks through the year as the warmer weather comes the attacks get less and as it gets colder they increase again. 

This year my attacks have still continued but are at the lowest they have ever been despite stopping half of the medication due to having allergic reactions and bad side effects and thankfully they have been manageable with my 2 injections i am allowed each day. I have seen more pain free days in the last couple of month than i have seen in the last 10 years. I am grateful for the help of my specialist who finally diagnosed my condition back in 2012 and ever since i have been able to battle the beast on a day to day basis. The trouble with taking so much medication is that it has an effect on the body and now days my health seemed to drop rapidly and i found myself having check ups for kidney problems , heart problems and even cancer. Thankfully everything was OK and it was just side effect of medication and the result of getting a hiatus hernia and IBS which was all caused from the amount of medication i was taking.

I still suffer badly from the hernia and have major problems when eating and swallowing and my bowels still only work now and again and i suffer from extreme constipation and IBS. My sleeping is terrible and i only get a few hours each night as i am constantly woken up by the beast in the early hours with my first attack of the day, but thankfully this isn't all the time like it used to be and i have been managing quite well. I was still getting the odd attack and due to the hernia causing an imbalance in some type of acid in the body i now keep suffering from fungal infections in the mouth and have to constantly use mouth wash every day to keep it from building up. I also managed to start getting out of the flat a lot more and even managed to continue my fishing with my first big trip of the year the other week.

The hot weather seems to be helping and keeping the attacks low but for some reason all of a sudden i have difficulty walking once again. When i try to walk any distance my legs muscles really ache like mad and after a while i begin to get really strong pain in the muscles and if i try and continue walking to ignore it they turn into burning legs as though my legs are on fire. I don't get it all the time but every couple of days this happens yet i don't feel ill any other way and i don't get tired or out of breath until i have been struggling walking for quite a while. I saw my doctor about this and even she was confused as to what could be going on. We suspect it could be the small lump in my lower left back causing pressure on the sciatic nerve during my sleep and that could be causing the symptoms but again its all guess work so i now have to wait until i see my specialist once again and also for blood tests to be done.

Just when i thought things were improving and my heath was getting a little better the beast decided to return and so far i am on my fourth attack this morning. I can only assume its the low pressure we have over us at the moment as its gong to rain a little later that could have triggered it as i don't know what else it could be. I am also getting the strong shadows once again and i haven't had those for over a year. When the shadows come it means i will have constant attacks through the day and there is nothing i can do except sit and wait until each attack starts and if i use up my injections then i have to ride out all the other attacks which can last up to an hour and half each one, by the time the attacks are over all i want to do is lay down and die. Every attack i have is the same , they start in the same place and travel over the left side of the head along the same path into the neck. They eye always starts to swell and close and tears runs constantly down my face. My nose blocks on the left side and my face starts to droop like i am having the beginnings of a stroke. I am just praying this is just a pad period and it will again ease as i am planning to go fishing again tomorrow with my mother and step father and really don.t want to have to deal with these attacks all day long. Lets hope the beast is only visiting and doesn't plan on staying too long!

A Nice Birthday Gift to Remain Pain Free for the Day!

Well the last few weeks have been interesting recovering from the symptoms of an allergy that we still don't know what caused it.  Recovering from really bad sunburn to my hands and lower arms after going fishing and getting caught out in the sun with no protection at all and ending up with swollen hands. Still getting the odd attack in the early hours mainly when we have weather changes from low to high pressure,  its getting so regular i could start my own weather service. My bowels finally returned to normal after the allergy seemed to stop but still suffer from IBS so they will constantly play up any way. But at least i am feeling better after going through such a row of bad luck with my health.

For the time being the only problem i am getting is whilst i walk the aches in the muscles in the back if the legs and top part of the legs every now and again and it feels like its burning. IT seems to be coming from the small lump in my back and the doctor is starting to think it is causing pressure on the sciatic nerve and that's what the pain and problem is as the rest of me seem ok at the time it happens. I can get a little short of breath through struggling to walk but that's through straining the body and not the condition. So i have to take things easy for a while while the doctor looks into it but it didn't stop me finally getting out and doing a bit of proper carp fishing and getting lots of fresh air and sun.

(A little too much sun at times)

The fishing trip started out a bit shaky with me loosing 3 fish but ended up having a great 48 hrs non stop fishing camped overnight fishing for the king carp species with the largest fish 18lb 10oz. I went with my friend John Rees and was also visited by a few other friends like Brian and Dean who are bailiffs at the lake its self and members of the fishing club we are in. I did have 2 attacks whilst i was fishing both brought on due to an unexpected heatwave on the second day resulting in me getting badly sun burnt hands and arms that have now peeled and recovered thank god. When having attacks i ask John to take care of the rods in case of a bit , i go into my bivvi which is like a luxurious tent and take the injection and stay there until the attack finishes and then return to fishing none the worst just a bit sore after. 

Its easier so stay inside the bivvi when having the attack as the  pain is too much and sometimes can scare passers by so being inside take that out of the equation and you can deal with your attacks. If anything was to happen i know i have people around me that will do everything they can and make the right phone calls and take care of things for me. So whilst fishing i actually feel more secure than i do at home. I Always take the medication i require with me and inform someone where i will be and for how long i am staying this way you always know there is help at hand if needed. 

Its finally another Birthday today and i have a lazy day indoor planned, nothing new there then! I will be going fishing towards the end of the week or the start of then next week for another 48 hour session on my local lake whilst we still have the warm weather, so depending on the passing storms i will try and catch 2 days clear and go then. I will also be fishing a few other places over the coming summer months as now i am feeling better i will try and get out fishing as much as i can as it gives me fresh air and something else to keep me occupied other than my illness. I still have to remember i am recovering and have a hiatus hernia so i do have to take things easy and not over exert myself but try and get as much exercise as i can, whilst i can and when my back and legs hurt stay and rest and don't make em worst. Try and make the most of the times i am feeling well as winter is not far away and as i know through experience the attacks return in number. At moment one or two and day controlled through my injections is amazing lets hope its stays a while.

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.