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.