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.