The beast continues to attack during the early hours….

The day after my endoscopy at the hospital i suddenly had what i can only describe as an attack from hell. It has to be one of the strongest and most painful attacks i have had in a long time. With my attacks now down to half the amount they used to be and an average day seeing mostly 2 or 3 attacks, that i can deal with using my injections, you can sometimes be lead into a false sense that the attacks are stopping or getting better then suddenly you have a really bad day triggered by either stress or cold and then you remember just how much pain you are actually in all the time. No matter how many attacks i have and how used to it i think i am you always end up surprised just how much pain the human body can take.

Each morning i am still waking up in the early hours with the beast attacking me and my head seems constantly swollen along the line where the attack seems to run. My neck is in pain all the time and i am still getting pain travel from the neck down the back towards the lump i have on the left of my spine in my lower back. This lump can sometimes hit nerves as it moves about and when it does it send an electric style shock straight up my back and into my neck. This can also set off the attacks and aggravate the beast if i am not careful. My stomach is still swollen and my bowels are still problematic. At least i now know it is the hiatus hernia that has been causing all the problems up in the chest and when i eat and drink. I just don’t know what the doctor plans to do about these problems or if they are just going to leave me and i will have to manage them with yet more medication.

I am still sure it was the medication that has caused all these problems. Because i have to take strong medication for the CH condition it has side effects that you have to put up with if you want to remain pain free. Then you end up taking more medication to take care of the side effects and it just one giant circle. No wonder my bowels are so bad and i am always suffering with constipation. I am praying that when i see the doctor next week for my biopsy results that she will have some sort of plan in mind in order to treat the things i have going on at the moment. If i can get the back sorted and my bowels moving again i am sure i can learn to live with the hernia and my CH attacks. Also with the help of new medication from the specialist i should be able to get these attacks under some sort of control this year.

I was having so many problems last year that i missed out on a lot of fishing. There was so many venues i wanted to visit and so many chances i missed out on due to pain all the time and my back not letting me move about. I don’t mind having an attack whilst out fishing as i can hide away in my bivi and not let people see me thrashing about in pain. When the attack is over i can then go back to fishing which is one of the only things that relaxes me and makes me forget about my illness and worries. It gets very frustrating when you can’t get out even to your local lake that is just 5 minuets down the road. I am determined this year to not let it happen again and to stop shutting myself away in the flat and start to get on with my life instead of waiting for the next thing to go wrong. Now i am starting to learn what is actually wrong with me i can now make a plan of action and make sure i don't make my condition worst and keep myself comfortable so i can get out into the fresh air a lot more and get on with some fishing.

Starting to find out what’s going on at last…

After years of suffering i am finally starting to get some answers as my appointments start to appear. I know the NHS is stretched but i have been waiting for these tests for over a year and now they have done them i am finding out that my suspicions were correct. I had been given my appointment time and date for the endoscopy to try and find out why food keeps trapping and also liquid making it difficult to breathe until it has passed through. I have to massage my chest like crazy when it happens and the food or drink eventually passes through with a pop. When i received the appointment i was very worried that i could have a CH attack whilst they were in the middle of doing the procedure. Due to being so worried i had opted for the sedation option rather than the throat spray and it wasn’t until i had the endoscopy that i regretted my decision.

They took me into the room and asked me to lay on the operating table whilst the nurse put a needle in the arm and flushed through the blood. It was just after they gave me what ever it is for the sedation and then asked me to put a blue guard into my mouth and bite down on it. This guard ensured i couldn’t bite down on the tube as it was pushed down the back of my throat. As soon as it started i began to heave and throw up. The nurse was using a small tube with suction to get rid of all the bile i was bringing up. With each movement i kept on throwing up and it was then that the specialist realized that the sedation had no effect on me but was too late to stop what they were doing. I continued to throw over and over again whilst she was looking around to see what problems there was. It only took 6 minuets from start to finish for them to find the problem but it felt like ages.

After it was all over i could feel that they had scratched the back of my throat and it was really hurting. I wish i had taken he throat spray instead. The nurse then called me into a side room and said she had good news and bad. The good news is they found what was causing me all these problems. The bad news is that is a Hiatus Hernia and that i would have to change my lifestyle. No more could i have caffeine or chocolate and had to avoid fatty foods and mints. I was also to try and cut down my smoking and change from normal meals to small regular meals that i could cope with making sure i do not eat 3 hours before bed. I am also to elevate my bed by 10 degrees at the head by placing pillows under that mattress so during my sleep i don't develop acid in the chest where the hernia had come through. 

As you can see from the picture above it is quite a large hernia that i am going to have to learn to live with. Ever since my diagnosis and the start of these strong medications my health has been going down hill and no matter how hard i fight i just can’t seem to cut a break. I am grateful that my attacks have halved but i am still getting bad ones and i can get up to 4 a day and am only able to abort 2 of the attacks using the injections so i still end up having to go through hell for over an hour at least once a day. I haven’t yet restarted my Sodium as i have a swollen stomach and swelling around my heart according to the hospital so they took a biopsy to see if it is from a rare stomach bug so i still have to see the doctor in 5 days to start to make a plan of action as to what to do about all these problems. I have also been keeping an attack diary to keep track of all the attacks and the things that have been happening to me, I decided to start this since i was in hospital last year so i could see if certain things make it worst or if it gets better with the treatment.

I am hoping that as soon as i can start to restart the sodium the attacks will then disappear and even go into remission for a while giving me a chance to get myself a bit fitter. The trouble with suffering from illness all the time is it is very difficult to get out in the fresh air or go anywhere to take your mind off things as you end up locked away in your home all the time scared to go out in the cold just in case it triggers a big attack as the cold is one of my main triggers. I try to do things to take my mind off all the stress and worry but it is so hard. Every morning when i wake up i am expecting pain and discomfort all the time. I am praying that now we are starting to learn exactly what things i have wrong with me, as we treat them i will start to be able to get out more and get back to my fishing. I have planned to start my season in March this year and try and get out as much as i can as i missed out on many fishing trips last year due to the pain all the time and this year i refuse to let it stop me. Once i have the correct medication for each condition i should be able to start to manage it better,resulting in a lot more pain free time.

Coping with the attacks a bit better, will it continue…. ?

The beast has been good to me since the start of the new year with an average attack count at 4 per day it is half of what i was getting last winter. Whether it is the medication that has done it or i am getting slightly better i don’t know but at leas i am starting to be able to control the attacks a little better than i have been. With most days hitting the 2 attack mark i can easily deal with then using my 2 injections. Then on the worst days i only have to ride out 2 or 3 attacks at most so i am finding that i can cope a little better. It’s still not good having to deal with any attacks at all but i am grateful for small improvements at the moment.

My bowels are still playing up with me only being able to open my bowels once every 4 to 6 days and by the time i do go i end up in a lot of pain from my stomach and wind. I am still waiting to go so i can give a sample to the doctor so they can test for stomach bugs, but when you cant go on cue its a waiting game. My stomach is hurting at the moment and i have a lot of wind build up below the chest so i am sure today we will see some movement even if it is disgusting. As soon as i can get the sample we will know what else we can do in order to make my bowels normal again.

I still have trouble eating and drinking with food and liquid getting trapped as i swallow and choking me but suddenly pops down if i rub my chest vigorously. Why it is doing it i don’t know but the have decided i need an endoscopy and have been waiting ages for the appointment. It finally came just before the weekend and i am now booked in to have it done next Monday the 19th January. I have to admit i am terrified at the thought of that being put down my throat and not being able to breathe. I know they will do everything to make me feel comfortable and said they will sedate me so i don't have to worry about having an attack during the procedure but its still a horrible thought.

The trouble is the need out weighs the fear and it needs to be done in order to find out why i have been getting so poorly all the time. It bad enough struggling with bi polar and suffering from the CH attacks every day but to end up with other health problems is really starting to take its toll on me. All i want to do is get on with life and enjoy each day as it comes. To be able to get out and go fishing again and spend some quality time at the lake side would do me the world of good. So hopefully as soon as they find out what is going on and what treatment i need i should be on target to starting my fishing again for this year. March is fast approaching and i am determined to make up for all the fishing i missed last year.   

Not a good start to 2015, it can only get better…

Another Christmas has gone and another New Year passed. As we start 2015, unfortunately with more attacks from the beast, i am trying to stay as positive as i can and hoping that the medication will soon have these attacks under control once again. Each morning i am woken in the early hours by the beast causing some big attacks that seem to last most of the day. Although the main attacks are over within an hour it leaves me in pain all day long. I get sharp shooting pains up and down the left side of my back and of course what i call the shadows constantly aggravating my head with the feeling of pressure on the left side of my face and head. It feels like each time i get an attack more and more of me becomes damaged and i end up with more problems to deal with.

Again my bowels have given up on me and no longer work properly. I find that i can’t even push my stool out as the strength is just not there when i try. I end up filling up on food and drink through the week and then every 5 or 6 days my stomach starts to hurt and i end up in a lot of pain and then the bowels will suddenly open on the 7th or 8th day with what i can only describe as sewage. My bowels empty as it turns to water or runny porridge and the smell…. well i won’t go into too much detail as it is gross but you can imagine. The food must be rotting inside of me and then when it becomes toxic the body is having to remove it the hard way. This has been going on for some time now and has only become this bad in the last 3 to 4 weeks. I have tried everything and am taking 3 different types of laxatives and still i have big problems. I am booked in to see my doctor this Wednesday otherwise i would be making an emergency appointment it has become that bad.

I am struggling to eat food and drink as when i do it hits my stomach and then i get a lot of aches and pains and wind build up due to the problem with the bowels. This can make it very uncomfortable and painful for the entire week until the bowels decided to do what they must to get rid of it. No matter how much laxative i take it just wont go back to normal. If i stop taking the laxative it becomes completely impossible and i can go almost 2 weeks with out going to the toilet and that becomes so painful i just don’t know what i can do to stop all this happening. I am praying the doctor will have some idea as to why the sudden change and why it has become so bad. I believe it is down the the damaged nerve that is causing me so much pain and trouble and has also caused a weakness in the left side of my body. I think the muscle isn’t working properly and that's why i can’t seem to push my stool out.

It’s bad enough suffering from the attacks each day and having to deal with the side effects of the different medications i am on. Now i have another problem caused by either the medication or by the weakness in my muscles. This all comes from the beast. The attacks are what started the weakness and now it seems to be getting worst and worst as time goes by. Even though i am now down to 50% of the attacks i normally get, this is an amazing improvement compared to the start of last year, the trouble i am having due to the medication i am on is really getting to me. I no longer go out due to the fear of the cold bringing on attacks and the fact that my stomach and back is now in constant pain all the time. I wish someone would cut me a break and that just for once i could go a week with out any problems at all.

Again the Atos medical group have called me down for a medical review that they said was from the department of works and pensions to see if i am ill. Are they for real? I can’t believe they have called me down especially as we have kept all departments up to date with all my treatment and now they are making me go through it all again after i did all this last year. I am really worried about having an attack whilst i am down at the review centre as they have no medical facilities in which i can get help so i am on my own. I will have my injections and pray that the beast doesn’t appear when i am with the doctor otherwise they will have to cancel the appointment and i will have to be re-booked.  don’t want all that to happen as i just want to get it over and done with. I don't understand why they wouldn’t come to my home and see me as i have nothing to hide from them and wish i didn't suffer from these illness’s. Lets hope it all goes smoothly and i can then relax for the rest of the year and concentrate on getting better and stop worrying about silly things.

Not the start to Christmas i wanted ….

I so wish it really was father Christmas really did come and visit in the night and i was woken by him rather than the beast reminding me of the pain i am in all the time. Again 4 am this morning i was woken by the beast with yet another big attack. I wouldn’t mind so much but since yesterday i have been getting some nasty chest pain on the left side of my chest and tingling in the arm. The trouble is i get that from the damaged nerve so i can’t tell what is causing it. The chest pain in not normal but can be caused by wind and with my bowels playing up all the time i am convinced it is the wind that is causing it.

NO matter how much i tell myself it is wind it still doesn’t stop me panicking and worrying that it could be the heart as when it comes the heart suddenly starts to beat very hard like its trying to jump out of my chest. It is very similar to a panic attack so makes me wonder if , when i comes, i am just stressing and causing a small panic attack. Not only yesterday i was getting this but again this morning after i had recovered from my attack and prepared myself for a busy day suddenly it started again so i hope it is wind and it will shift soon because its doing my head in.

Not the sort of start i would like for Christmas but that's how it goes sometimes we can’t always be healthy on celebrations and i am sure there are people who are a lot worst out there than me. Christmas is a time for family and that's what i need to concentrate on. Spending the day with my family and having a great dinner over at my mothers house. I can’t wait. i Just have to remember to take it easy as my belly hasn’t been too good for the last week and my appetite seems to be on existent but i am going to try my best today.

I would also like to thank my friends and family for all their support over the last few years when my life suddenly took a sudden turn. It has been a difficult and worrying time and unfortunately my poor body has been to hell and back but i am still breathing and have to be thankful for what i have. I would like to wish you all a very Merry Christmas and a Happy New Year and hope you all get what you wish for and next year will be good to you.

Martyn x

The Mild Weather is not aggravating the Beast…

Although this year hasn’t started as cold as last year did i have still noticed the sudden change in temperature and weather and the head is still very sensitive to the cold weather. My attacks are still in the low numbers so i am pleased that they haven’t become as bad as they did last winter and thankful i am now on the right medication but it still doesn't solve the problem that i feel cut off from the world unable to go out in fear of an attack coming even though i have the injections to abort at least 2 of the attacks. The fear of the attack over powering the injection as it has done on many occasion and then having to deal with a full attack out in the open and cold and watching the faces of others as they see you screaming in agony and the sudden fear on their faces as they don’t know what to do or say.

When you try and explain everything is OK its normal they panic and think you are having a stroke when they see the left side of my face droop and my eye close and swell as the pain becomes so bad the ringing in your ears starts to block out any back ground noise and all you can concentrate on is the pain that's running over the top ofy9our head into your neck and behind the eye, like someone is shoving a red hot poker straight through your head. The attack i get are some of the strongest pain i have ever known and i can’t really explain how bad it gets but i am grateful i don’t have to go through half as much i i used to and wonder sometimes how i managed to cope until now.

With another year slowly coming to an end and another Christmas dinner being planned and shopping like crazy to try and take your mind off things i find it just doesn't help any more. I don’t even feel like going out shopping but i know i have to, i have to make an effort to get my life back in order and stop letting the beast control me with fear of the attacks all the time. I have missed out on so much this last year i have made a promise to myself that i would make up for it in 2015 now that the attacks have reduced significantly. I promised myself i would concentrate on my fishing again and get the web site running smoothly with new stories and adventures and start designing a new fishing magazine as i planned. It gives me a goal to aim for and something to concentrate on and that’s what i need instead of giving in to the pain all the time.

It annoys me also that i have problems with constipation and my bowels all the time as that always makes you feel a lot worst than you are. I have just got over a nasty cold that really nocked me for six and that was why i wasn’t updating my blog as much as i used to. I am now getting over the cold and starting to get back into things. My chest still hurts slightly so i may have a small chest infection from the cold but that will clear with the use of some cough syrup. I am booking a quick appointment to see my doctor on Monday so i can discuss my reduction of medication and start coming off all this medication i am on as that doesn’t help me one bit. I should only be taking what i desperately need and nothing else. Also i need to talk to her about removing this fatty lump next to my spine on the left in my lower back as it is causing me a lot of pain and Discomfort and i can no longer sleep on my left side or my back because of it. Hopefully they will opt to remove it or at least try and break it down with medication but at least they best do something as i cant go on with that causing me problems on top of every thing else.

Well that’s my moan and groan for the day and i would like to wish anyone who reads my blog a Very Merry Christmas and a Happy New Year and hope that 2015 will be a year that brings you all your dreams and hopes. So Have a Good One!

Attacked by the beast but still improving…

You open your eyes and realize that you are awake but don’t feel tired and have to wonder have you slept at all. It’s not until you notice the time on the click, 3am, that you realise the beast is paying you another early morning visit. Suddenly your whole body breaks out in sweat and your bed clothes become soaked and you start to shiver from the cold air hitting your body. Your eye starts to swell on the left side and the pain starts to build slowly behind the eye and on top of the jaw also on the left side. You jump out of bead and rush to get your injection but by the time you have it you are already in full attack. The pain shoots from the top of the jaw, behind the eye socket and out over the top of the head along the left side and into the back of the head where it connects to the neck.

The pain is so bad all you can do is hold your face and pray that it will end soon. You take your injection hoping that it will work as fast as possible and then sit holding your head waiting for the drugs to kick in and the pain to ease. You feel your chest tighten and your breathing becomes heavy as the injections starts to work and you feel a strange feeling along the path of the pain and suddenly as fast as it started the attack is over.  It’s amazing, no matter how many attacks you get you never get used to how they go and how strong the pain level becomes. It actually feels like the pain becomes stronger each time an attack appears.

You would think after suffering from so many attacks i would be used to it all by now but i don’t think you can ever get used to this condition as it is so unpredictable and can come at any moment. It’s not like it waits until you are home relaxing before it comes, you could be on a bus or in a car and suddenly an attack would appear rendering you completely at its mercy. It’s not until the pain eases can you start to do anything or try and get back on with what you were doing before the attack. Sometimes it can take up to an hour before you come to your senses again and other times it can just take 10 or 15 minuets , there is just no telling how long an attack will last until you have one.

It makes it very difficult to plan things or go out for a day out as you just don't know if the beast will show its face. I try and stay indoors especially in winter as the cold is one of the main triggers for my attacks and by staying in the warm and keeping my flat in a certain temperature i am able to reduce the amount of attack i get in a day by a minimum of 50% which is a huge difference from what i normally get,. It does help that i now have the injections and other medication that i didn’t have a few years back and though my life was going to end and it was going to finish me off. When i was diagnosed and told there is medication to help ease the attacks it was like a huge weight was taken off my shoulders. When i was told that there was no cure for the condition and that it could go into remission on its own i wasn’t very hopeful but this year i have seen a huge decrease in the amount of attacks i have been getting and although i still suffer i am pleased with the progress i have made.

I am just hoping that i will continue to improve and manage to claw back some of my life style that i lost when i became so ill. Hopefully now as things re slowly improving i can start to plan some kind of future for myself and start to look forwards to things rather than just worry how ill i am going to be each day. It feels nice to finally get my life back and start to feel like i have some sort of control again. Lets hope this improvement continues. I am just getting over a nasty cold that seemed to take a lot out of me so its time to strengthen myself up again and get back to my fishing as i have missed out on so much this last year i need to get back into it.