Depression gets to you when in pain constantly

Yet again the beast has attacked me in the early hours of the morning resulting in me having to deal with several attacks one after each other since 3am.  The attacks or the condition is being aggravated by my neck and back today for some reason. This was one of the main reasons i ended up back in hospital last time as something trapped in the neck and ended up setting off attacks constantly with no break in between each attack. Thankfully it hasn’t got as bad as it was before and i am trying to take it easy so i don't aggravate it any more and cause even more attacks but it is very hard to ignore the constant pain in the neck and back.

From my last visit to the hospital we know i have a problem in the neck and weak muscles on the left side due to all the problems i have been having and the nature of my attacks but we are still unsure exactly what in the neck was causing the problem. I think it is something to do with the nerve swelling up and seems to be trapping something as i can feel a straight line down my back and over my shoulder that appears when the back and neck is really bad. It also makes the pain spread to the bottom of the back when i am moving about making it very painful and difficult to do the simplest of tasks. I am taking ibuprofen and paracetamol tablets in order to supress the pain but like my head nothing seems to help as i believe it is actually nerve pain that i am experiencing.

I am convinced it is the nerve in the neck and back that is playing up because i can actually feel something swell up like a shoe string down my back starting in the neck. It also travels over the front of my shoulder towards the heart but that feels more like a muscle cramp and isn’t as sharp as the back and neck pain. When the neck and back starts to play up i have noticed it always coincides with the swelling on the top of the head that goes over the scar and behind the eye. I also get a lump just on the eye brow that also seems to swell up when an attack is about to start. This is how i know it is the nerve that is causing the pain and why no pain killer on the planet seems to touch it.

Today has been a very painful day having to put up with the normal attacks i get and then also having to deal with the neck and back pain constantly aggravating my head and leaving me uncomfortable all the time. No matter what i try i just can’t seem to get the ache and pain in the back to ease i just have to wait until the neck calms down and the pain eases on its own accord. It always seems to become worst when there is wet or cold weather. This is why i believe that the wet and cold weather is my main trigger for my condition and i am dreading when winter returns and i have to go through the increase in attacks all over again. I just hope by that time the doctors would have found the right medication for me to help put it into remission and stop this beast from destroying what life i have left.

It is so hard to try and stay positive all the time and try not to think about your illness and how it is slowly draining the life out of me. I find myself locked away in my flat all the time not being able to go further than 10 minuets from your front door in fear of the attacks and pain all the time. Even when you go out in a vehicle you have to be careful as, if on a bus for example, the vibrations from the road seems to travel up the nerve and ends with it setting off a major attack. Also being alone in my flat all the time gets me down and makes my depression play up a lot more than normal. Friends keep telling me to get out and mingle a lot more but its so hard when you are in pain all the time or scared of the pain that is about to come.

Trying to have a relationship with a woman is almost impossible at the moment as i am always tucked away in my flat for safety and never get out anymore to meet anyone.  I used to go out to the clubs and pubs when i first returned back in Wales but as i got worst and worst my life style went through a dramatic change and the quality of life started to slip away from me. I have tried very hard to maintain some sort of life style and try and keep in touch with the friends that live closest to me and of course my mother and brother but slowly they are becoming less and less. Many people are afraid of things that they don;t know or can’t explain and when i have an attack i have seen the fear in their eyes as they just don;t know what to do.

Even after educating some of my friends about my condition so they don’t feel so bad when i have an attack i am still finding that they don’t like to be around when i am bad and to try and find a woman that would take on someone with such an illness is almost impossible. It does make me wonder if i will have any sort of relationship in the future and what life has install for me. Every day i have to fight the depression that comes with this kind of illness, knowing that there is no cure for what i have and no operation that will help to heal me and all i can do is wait for the right medication combination to be found can sometimes make me feel as if life isn’t worth all this pain. Every day i have to keep reminding myself that there are people a lot worst off than i am and many people that have terminal illnesses. I should think myself lucky that at least i do have some sort of life style as there are so many that can’t even do the basic of tasks. In my heart i know that this condition will probably end up killing me but at least i will still be able to live till i am old, all be it a painful time at least i have that time.

I thought i had broken my neck it clicked so loud..

It was about 3am when my eyes opened from a nights sleep and at first i was unsure why i had suddenly woken up so early. Then i sat up in bed and looked towards my mobile phone to see what the time was and as i turned my head to the right my neck clicked loudly around 3 or 4 times. Each click was like and electric shock through the whole of my body and scared the living daylights out of me. At first i thought i had damaged my neck and had to lay there as still as possible as i didn't want anything else to happen. It was then that the pain began to build behind the left eye socket and at that moment i knew the beast was here and an attack was about to start.

I started to move again and jumped out of bed and moved into the living room to take my injection as quickly as is possible to abort the attack. Normally i keep some injections by the side of the bed but for some reason i didn’t take any with me last night so i ended up having to deal with the first part of the attack before the injection kicked in to abort it. The pain behind the eye was again so strong that my whole body just burst into a cold sweat and it was pouring off me like someone had turned on a tap. The pain then travelled over the top of the head following the line along the scar that i have from when my head was split open. It then travelled over the top of the head and into my neck.

All i could do was hold my face and pray to god that the pain would stop soon. As the injection started to work i could feel my chest tighten and my breathing become shallow. I tried to concentrate on my breathing and try and ignore the pain but its very hard to ignore something so strong. As soon as the injections took over the pain stopped just as fast as it started and the attack was gone. It left me with sharp pains down the back again and of course in the neck as usual. No matter what i try i just can’t seem to stop the pain in the neck all the time. This pain seems to travel down the top half of my back just under the left shoulder blade and also across the front of the chest towards the heart. It must be a muscle or a nerve that is trapping somewhere in the neck that is causing all this.

When i was at the hospital last time they started to look into this problem and i am now awaiting contact from the physiotherapists to see if there is something that can be done as it becomes so painful i just can’t move about normally. I also get pain at the bottom of the spine that spreads right across both sides of the bottom of the back and also spreads into my bum cheeks, especially if i am carrying something heavy like a bag of shopping. I have noticed that the back pain and shoulder pain that comes from the neck always seems to get bad when there is wet and cold weather. I am not sure if it from arthritis but something is surely making it a lost worst than it normally is.

I am at the hospital on June the 2nd (next week) so i will have a chance to talk to the specialist and bring up the things that have been worrying me. I had my appointment with the doctor yesterday but she is very reluctant to do anything with out the specialists say so. This makes things very hard to try and get treatment even for the most simplest of complaints as the doctors doesn't want to make my condition any worst than it already is. I know i have been referred for an endoscopy so they can take a look at what's going on in my tummy and why i keep getting liquid and food trapped at the top making me feel like i am choking.  This is going to take a while before i get my appointment and they take a look so until then i just have to put up with the horrible feelings i get when it does trap.

I don;t know if it has anything to do with the head and the nerves, i don’t think it is linked to the head but you never know. Illness can sometimes cause some strange things to happen. At least the hospital and doctors will be checking it out so that puts my mind at ease for the time being. I am hoping they will get to the bottom of things quickly as it is bad enough suffering from one illness let alone 2 or 3 different complaints. My bowls have started to improve and i find myself in less and less pain each day that passes. Finally the wind has started to shift and the bowels have opened properly so hopefully these stomach pains and wind problems will soon be a thing of the past. As to why it blew up into such a problem is beyond me and i still think it was down to all the medication i was on. At least it is starting to go now and things are getting better. I just wish my head wouldn’t keep playing up.

OK i am getting a lot less attacks now that i have had in the last 2 years. It seems to have gone back to the old cycle where in winter it is very bad but as summer comes and the warmer weather it gets less and less and i find i have more pain free days than i did before. I am still only getting a maximum of 3 pain free days in a row but at least the amount of attacks i have been getting are half what they were. That’s one thing i have to be grateful for. Let’s hope the improvement continues and we can finally get this beast under control.

A Beastly bank holiday and a pain in the neck …

So much for a pain free bank holiday! I was hoping that with the weather being warmer i wouldn’t have so many attacks but unfortunately the weather decided to change and bring a low pressure front not only bringing rain and wind but also the beast along with it causing me attack after attack. The beast has been waking me up in the early hours normally from around 2.30 to 3am with some very nasty attacks leaving me to stay awake all morning feeling like a zombie as it is almost impossible to get back to sleep once the attacks have started for the day. Even with my injections taking care of the worst attacks i still find myself struggling to cope and in pain all the time.

My back has really been playing up something rotten and causing me sharp pain up and down the spine on the left side again. Each time i move i get the sharp pain shoot up and down the back and also across the bottom of my back and into my bum cheeks. I don’t know where this pain comes from and can only guess its from the same problem that i have been getting in the neck. Something seems to be trapping in the neck causing not only the attacks to appear but also causes my back to go to sleep or become numb across the top of my back between the shoulder blades. It actually feels like the entire back has gone to sleep and i get pins and needles across the back as it comes back to life.

What is going on with the back and the neck i haven’t  a clue but i do know it is definitely something to do with the neck as my neck has been cracking for the last couple of days. What i mean by cracking is that when i move my neck quickly from side to side i get a grinding sensation along with the bones clicking. This is caused by air trapped between the bone joints and is worrying when it happens. There has been a few times where the neck has cracked so hard that i thought i had broken my neck and was scared to move for a while until the ache had gone away. This normally happens first thing in the morning after a nights rest where i must lay funny or moving during my sleep aggravates it.

Thankfully i have an appointment to see my doctor tomorrow morning and will have to bring this up with her as i feel i have enough problems for now and i don’t want any more to add to the list. I am slowly getting better with regards to my bowels and wind problems and my attacks are slightly under control and has improved compared to what they used to be like. The last couple of days i have had a feeling like there is something trapped at the back of my throat and no matter what i try i can’t seem to get rid of it. I have tried gargling mouth wash and eating dry toast but there is still something there making me feel like i am about to gag at any moment. I may have scratched the back of my throat with something and that would explain the funny feeling but i better get it checked by the doctor before it turns into something else and i end up with problems.

I am still getting food trapped when i eat and also water or liquid when i drink. It’s like you try and swallow but the throat just won;t open and you feel like you are about to choke. Then after a while massaging the chest, rubbing from the throat down, it suddenly opens and the liquid or food will suddenly go down with a pop. The specialist i am seeing for my head has referred me to another specialist for an endoscopy to take a look at what is going on and why it is doing it. I am hoping its not a long wait and i can get it done soon as it does worry me a little. For the time being i am just being careful what i eat and making sure i chew all my food properly so that is passes easily, not that it makes much difference as even water traps there. Fingers crossed it’s something silly that can be solved with a little medication.

Back to the Beastly routine again ……

Yet again i have been woken by the beast at 3.30am this morning with an attack so large it scared the living daylights out of me. I thought i was about to de at one point. The pain was so strong it made the ringing in my ears so loud i couldn’t even hear the TV on in the back ground. Again the attack started at the front of the face just above the eye spreading up and over the top of the head into the back of the neck and down the side of the nose to the top of the jaw. Sometimes it actually feels as though you have an abscess in the mouth but there is nothing there when you check. The pain continued to grow for well over an hour until finally the injection took hold and aborted the attack.

I have noticed that sometimes when i take the injection my chest suddenly becomes tight and it becomes hard to breathe properly. It tells you that this can sometimes happen in the leaflet you get with the injections telling you how and what to use them for. It also says that this feeling is normal as long as it doesn’t happen every time. To me it feels as though the heart is suddenly struggling to do its job and that’s why the chest becomes so tight especially on the left hand side. A scary thing to happen if you are not expecting it and especially when you are having an attack you just think the worst will happen all the time.

You would think i would be used to the medication by now but no matter how long i have been suffering from this condition i don’t think i will ever get used to the horrible feelings it sometimes gives you and the scary feeling you get after you have taken it and when the chest tightens. Maybe there is other medication that won’t give you these horrible side effects, i will have to ask the specialist on our next appointment in June. I am still waiting for the new appointment for my EEG examination and test as the hospital had to change the appointment due to the patient transport refusing to pick me up because the appointment i had was after 5pm and the patient transport stop at 4.30pm. If you ask me this is just madness that they have to change appointments just to please drivers as they don;t like to work late.

I have to be grateful of the warmer weather at the moment as it seems to be having the normal effect on my attacks as it did a few years ago. When it gets warmer the attacks become less and less and i end up having more pain free time. It has taken it’s time to start improving but finally it has begun. I think the steroids i was on when i was in hospital last must have helped it get back into its normal cycle and i am hoping that as June and July starts the attacks will be almost non existent, but i think that's a little too much to wish for. I should just be grateful for the smaller breaks i am having at the moment and hope that no more attacks will appear today.

The beast has returned and I've pulled a back muscle ….

A bit of wishful thinking hoping that i would go at least a week pain free and with out the beast showing its face. Unfortunately yesterday evening the Beast decided to pay another visit just to remind me how painful the attacks i get was and that it was still there. Then again at 4 am this morning i was woken by the beast with yet another massive attack and sharp pains up and down the spine making it painful just to walk a few steps and move about. The head has started to behave and become a lot less frequent due to the warmer weather. This is the normal cycle of my condition and it will continue to improve as the summer comes and goes and then will get bad again when autumn and winter comes with the icy cold conditions.

I am hoping that this year the summer will give me a good break from all the attacks and give the specialist and my body the chance to try different medications and hopefully stop the attacks from returning. I was actually hoping that the pain free period would last until the weekend was over giving me a chance to get out and do some fishing but yet again i have been beaten by the beast and am having attacks during the day period as well as early morning. I don’t mind the attacks so much as i can deal with them at the lake side using my injections, what i can’t stand is the pain i keep getting in my back both upper and lower back is causing me problems at the moment and the pain is very sharp. Every movement i take results in pain and agony so i am at the moment trying to keep as still as is possible and rest.

Hopefully a days rest will help settle the back and i may be ok on Sunday and will get to go out. I think the back is playing up due to me doing my shopping on Friday and carrying a couple of heavy bags back from the supermarket instead of getting a bus i decided to walk as it was such a nice day and i wanted to get out in the sun. Now i am paying for it and am in absolute agony with my back. Next time i think i will take the bus and not carry so much shopping. Until they find out what is causing all this i think i should be that little bit more careful as i don;t wan to end up like this all the time. I feel like an old man that can move about and has to shuffle from room to room with my back the way it’s. It’s never been this bad before so i think i may have pulled something carrying the shopping. What a foolish thing to do but who was to know it would cause all this pain.

At least my mother and step father Brian managed to get out and doo a bit of fishing up at Peterstone lakes, one of our local fisheries, and managed to have a very successful day out catching quite a few fish. My mother did really well and managed to catch a few tidy ones so she ended up enjoying the day in the sun. I am really happy she managed to go as she was worrying about having to give it up due to her health but has now managed to find a way and a compromise so she can go every now and again. All we need to do now is find a way of me getting out with out upsetting my back or at least make sure i don’t pull another muscle or something and end up like this again.

Feeling better and things looking good for once!

I am so grateful for the last few days being pain free and not having to deal with the beast in the early hours. it seems like my head has returned to normal and as the warmer weather is now approaching the attacks are disappearing and becoming less and less as the weather gets warmer. This is actually normal for my condition and is the same thing that normally happens each year. The last 2 years have been the exception to the rule as the attacks seemed to continue through the year with only a slight drop in the amount of attacks i have. This summer, for some unknown reason, they seem to have gone back to the same routine i am used to and they are becoming less and less. I would like to say it is because of the medication that they have improved but that isn’t the case. I am hoping that the steroids that the specialist gave me when i was admitted to hospital has helped in some way to return my head back to the normal routine instead of having attacks constantly every day.

I could be wrong and i am just going through a break in the attacks but normally i would still get the strong shadows if in a break period but i don’t have any shadows and i don't have any pain in the neck causing it to aggravate the head. I am still having some back trouble and pains in the spine but nothing as bad as i had been a few months ago. Even my stomach has started to improve and i am no longer bloated up as much as i was although i seem to have put on an awful lot of weight. This is very strange as i don’t really eat that much and for the last couple of weeks i have been trying to eat healthily. Even though i have cut down on the rubbish i eat and improved my diet i am still having problems with the bowels and constipation.

When i came out of hospital i have been battling with my bowels every day and end up in agony by the evening but this hasn’t been the case for the last week. Slowly but surely they seem to be improving and i am starting to feel a lot better but i still have problems. I stopped taking laxative drinks as at the start of last week i suddenly opened the bowels and the world came out but more like a waterfall rather than a solid mass. Due to this i have stopped the drinks now and only take lactulose solution in the morning and evening just to keep the stool soft. Even though i am still taking medication my bowels have gone back to how they were at the start and again i am having trouble going to the toilet.

Well enough about my bowels at least i am slowly getting better and that's the main point. It has taken a long time for what ever was causing the problem to start rectifying itself. I have tried everything to see if it was something i am allergic to and that is why i was getting all the strange symptoms but nothing seems to stand out as the cause. It is possible that it was the medication that started all these problems and it has taken all this time for the body to heal itself as it is run down but i still seem to think that there is definitely something i have taken that has caused all this and its not an infection or illness but is actually the after effects of a problem or medication reacting badly with my body. I am just grateful i am feeling so much better.

It looks like we have a heat wave coming at the weekend so it looks like it could be a weekend by the lake fishing out in the lovely sunshine. I have missed my fishing so i really want to get out and see if i can get back into the swing of things and actually start this years fishing adventures. I am so late starting this year its crazy but it is because i have been feeling so ill and haven’t had the strength or the get up and go to be able to get out fishing and especially having attacks all day long wouldn’t help. Now the attacks have calmed down and the bowels are on the mend i am hoping my health will now start to improve for a while giving myself and the specialist a chance to get this beast under control once and for all and to be able to go back to my fishing. It’s actually nice to feel well for a change, but for how long.. i just don’t know!

Things looking up and slowly getting better ..

Thankfully things have started looking up for me and the attacks i have been getting are no where near as bad as they have been. I have had a few days with no attacks at all and when they do come it is just one or two in a day witch are easy to manage with the injections i have. I was going to go back to the doctors to complain about my bowels and why they have been so bad for so long but then at the start of the week they started to work again and i have been feeling way better than i was even though i still have the odd bad day where the back and sides hurt but it seems at least they are starting to clear and get better so maybe what ever it was that was causing the trouble has now passed or cured itself. If they start getting bad again i will just go back to the doctor as i don’t want to go through all that again.

I will give it until the end of the week, so i will see how they are over the weekend, and if i am still getting any type of pain or aches and wind from the bowels then it will be back to the doctor once again and try and get something sorted. There is also a chance it could be what ever is causing food and liquid to get stuck when i eat. It seems to trap in the chest and then take forever to pass through to the gut. It feels like you are choking until it passes through and is not the most pleasurable experiences i can tell you. Dr Pickersgill, the specialist, had referred me for an endoscopy to see if they can spot what is causing it and if they see something they can then sort it out. At least it will put my mind at ease and it will be yet another thing ruled out.

The hospital has been amazing now the specialist is behind me. I have had all sorts of tests to see if they can find out what is going on and i haven’t had to wait as long as i did at the start. I am now back up hospital again on the 14th for the EEG to see if i still have a brain and if its working how it should. All i have to do now is wait for the appointment to come through for the camera down the throat and i will have had almost every test i can think off. The only test left to do is a colonoscopy to take a look at the bowels and stomach. This is something i should think about getting especially if i have any more problems with the bowel. It’s something i should talk to the doctor about and maybe book just to be on the safe side. I can at least say they have checked everything and will be able to look at all the results and see if they can put their finger on what is causing all these strange things to happen to me and maybe even what is actually causing the attacks even if they are incurable at least i would know what is the main cause and maybe even try and avoid setting them off all the time.

I have gone through so much since i actually found out what condition i was suffering and the effects it was having on my depression and bipolar condition. Feeling low all the time doesn’t help especially when you are ill and need to get out and exercise but don’t because you are feeling low. I have learnt sometimes you just have to force yourself no matter how bad or hard it feels. It’s only now that i am finding it harder and harder to walk to the shops or go out somewhere due to being out of breath or so unfit you just don’t have the strength to do anything. I force myself to do small jobs around the flat or go and do something for a friend just to stay fit and keep moving. Maybe now that i will have got all the hospital tests out of the way i will be able to get back to my fishing and get out in the fresh air, this will make me feel so much better and with a hot summer forecast i should be able to get out quite a bit this year.

A toss up between aborting or postponing …..

I have started the week with a much more positive attitude as i am feeling  a lot better not just in myself but also where my health is concerned. My bowels are starting to play ball and i have a lot less wind than before. I am also able to move around a bit more now the pain in the sides and back have eased  and i don’t get the shooting pains up and down the spine. I am still getting a little bloatedness and every now and again i have a problem eating as food gets trapped in the chest and takes a while to pass through but other than the odd attack from the beast i am doing OK for the time being. I know this can change at any moment so i have to enjoy the good days as much as i possibly can and the try and forget the bad days.

This seems to be the way i am living my life at the moment, i seem to shut myself away for the bad days so i can deal with the attacks and the depression in my own way with out anyone trying to tell you how you should be feeling and that they know how you feel when you know damb sure they haven't been through the same type off attack or pain that you have been getting. I know it sounds harsh but it is so true. When you are in so much pain and there is nothing anyone can do for you, there is no point trying to understand it as all you want is it to end and you don’t care how you end it you just have to, as the pain level is like nothing you can describe. When you have people around you it can sometimes help knowing there is someone there in case anything serious happens to you but can also aggravate your condition as you don;t like to be seen in agony and crying. A pride thing i suppose, one that needs to be put to one side when you are ill or in need of help.

I decided to treat myself this month to a complete new wardrobe and thrown out all the stuff i no longer wear that's old or damaged and buy all new items. I am the type of person that loves wearing tracksuit bottoms, of all kinds, as i find them very confortable and they always look smart and sporty if warn with a clean pair of training shoes. I do like smart looking jeans and only wear trousers on occasions, I decided to get myself 7 pairs of Tracksuit bottoms, assorted colours, along with  8 different colour Slazenger t-shirts. I also go some new socks and assorted boxer shorts making sure i had new everything so i can throw all the old in the bin. Next week i will be able to get my new Jeans and a couple of smart Tops and maybe even a pair of boots to go with the jeans and that my new wardrobe complete. So far its cost me less than £50 and that was to buy all the sports clothes from Sports Direct as they have a good sale on making it cheap to replace everything.

I don't want to temp fate at the moment as everything seems to be slowly getting better. My bowels have started to work and the stomach has calmed down for a while. I still pass a lot of wind that can sometimes become painful and leave me feeling bloated but this usually passes after an hour. I still sometimes get food and liquid trapped in my throat for no reason but the doctors will be looking at that when they shove a camera down the throat, yet another test to look forwards too. I am still getting some un explained pain in my lower back area and behind my shoulder blade on the left but i am sure that is linked to that attacks that  get. The attacks themselves seem to be behaving and the warmer weather is keeping them away i am just hoping they will stay away for a while each time. If its only one or two attacks i can deal with it as i have my injections that will abort the attack but sometimes i end up having the attack later in the day instead so something tells me it could be a toss up between aborting that attack or postponing the attack each time you use an injection.

Shadows can be just as bad as an attack …..

Again i have been woken by the Beast in the early hours at 3am this morning but this time it wasn’t followed by a full blown attack instead i have had non stop shadows all morning making it impossible to go back to sleep. The shadow feeling, as i call them, are made up from a strong feeling of pressure on the side of the head resulting in your head feeling very heavy all the time and aches and pains in the neck. The aches and pains in the neck can become so strong they travel down the spine and into the back as well as make you back muscles tense and ache. It’s probably just as bad as having an attack but is so annoying it is worst than having tooth ache as you just can’t seem to get confortable no matter what position you sit or lay in and even standing becomes a problem as the back and side muscle begin to hurt if stood too long.

I am grateful i am not having the full blown attacks today so far but the shadows can be just as bad at times and i sometimes wonder if there are not other problems going on that are contributing to my over all health. With all the ache and pain you get in the different places it does make you wonder some times. I can’t wait for the hospital to complete all their tests and hopefully get to the bottom of all this trouble i have been having as it does really get me down at times. There has to be something that is making me like this and feeling so ill all the time, it’s just we can’t put our fingers on it and until all tests are done no one will be able to say “aha this is what's causing your condition!”, but hopefully soon they will.

The weather has been really nice just lately. The start of Spring was a warm one and now with 2 bank holidays being very sunny i think we are in for a great summer. If this is the case i will be so happy as my attacks seem to disappear when we have really warm or hot weather and i will be able to get out a lot more than i have been. Not being able to go fishing just lately has really been getting me done and all i want to do is get out there and start catching some big Carp as well as other fish. For the first time in my life i have all the fishing gear i could ever wish for and if there is anything i need i can get it at discounted prices thanks to the web site that i started so i really want to get out and start using all the new gear and baits i have. I will also bee passing these discounts on to other people that join in with the web site as a bonus for them as i think its only fair as they have helped me not only with my health but also getting the site up and running.

I am back up the hospital on the 24th May 2014 for another test, an EEG as i mentioned in an earlier blog. I wonder why they are doing one of these now and why it has taken them so long to get around to doing one. I remember having one when i was very young after i started to have black out every time i really yawned but this turned out to be nothing and they said there was nothing to worry about and i eventually grew out of it. Now this test is one i thought they should have done right at the start when i reported the attacks that i was getting but they have only now got round to doing it. I think its because me specialist is very thorough and has referred me for all kinds of test that he wants me to have.  I will be checked from head to foot so he can find out exactly what is wrong and what treatment i will need.

Well with all the new appointments and referrals being made i can see the next few months will be busy with me back and forth the hospital. This i don’t mind so much as i know and hope they will finally get to the bottom of things so its a small price to pay having o go back and forth all the time. At least when its all done i will be feeling healthier and a bit more happier inside myself. The last few month have been difficult and there have been many a time i have wanted to just give it all up and wanted it all to end as i couldn’t cope with what was happening to me. I believed that having an incurable condition was going to be the end of me and my life was finally over and it has taken me a while to shake that feeling and understand that it is actually the start of a new beginning, just one in which i have to learn how to manage my condition.

A short break is better than none……

Although i was again woken by the Beast at 5am this morning i have to be grateful that i have had a couple of days rest with out any sign of an attack. Again the attack this morning was a big one, just to remind me that i have the condition, and caused me to break out in sweats all over soaking another clean t-shirt. When having attacks i find i have to change about 3 or 4 times a day as i always seem to break out in sweats. It must be due to the pain that comes with the attacks as it is such a high level the body reacts to it immediately making it seem as though someone has turned on a tap. Also the pain is so quick to start it doesn’t really give you a chance to prepare yourself for the agony you have to go through. Also talk about drain your strength, i always seem to feel as though i have been running a marathon by the time the attack is over and all my muscles start to ache and hurt, especially on the left side.

On a good note, my bowels have started to play ball and there is now movement all be it runny and like mud. Not the most pleasant of things to think about first thing in the morning but at least they are working and the pains i have been getting in the stomach has started to ease a little. It is definitely the wind that causes most of the pain and discomfort and then there is the constipation. Not being able to go to the toilet and suffering from stomach pains is one of the most depressing conditions i have ever known. I thought suffering from an incurable condition was bad enough but when a person suffers from severe constipation it can make them miserable and short tempered not to mention how depressed you become as you worry constantly about the aches and pains in your stomach all the time. Let’s hope, now they have started moving, that they will now start to settle down and i will be able to put it behind me and get on with trying to control the beast.

I have just received another letter from the hospital informing me of yet another test they want to run. an EEG to see if my brain is working how it should or at least confirm that i have one. I have had one of these tests before when i was very young and i can remember the cap with sensors they place on the head and then you have to do normal activities while they run tests for over an hour. Sometimes they will shine lights into the eyes to see the reaction in the brain and see if there is something that could be causing the attacks that i get. I am so happy with the treatment i have had with the hospital even though i caught an infection when i was there. They seem to be pulling out all the stops in order to get to the bottom of why i am feeling so ill all the time and i am sure with all these tests they will soon have some answers and will be able to help me manage my condition.

I haven’t been fishing for quite some time now due to my illness being so bad and playing up all the time. At least i am now getting less attacks and the stomach is now easing so i should be able to start the fishing season. My local lake has just opened for the new season so i can see me getting in a lot more fishing now and crack on with my other web site. It is looking to becoming a very good year as far as the weather goes due to a mild winter and a hot start to spring i think we are in for a very hot summer. About time we had some nice weather for a change, you can get fed up with the rain and grey all the time it can become very depressing. Let’s hope the weather stays good and i can get some fishing done.

Appointments made,referrals done,now its wait for the results. Fingers crossed for good news!

I managed to make it to my appointment with the specialist on Tuesday but still had major problems with my stomach and bowels. I have been constipated for ages now and was unable to open my bowels for almost a week when suddenly on Monday they opened with a shock. It was like a car back firing it was so loud and smelly. I have never seen anything so disgusting in my life. Even a sewer would have been a lot more pleasant than what came out of my back side and i don’t want to go into detail, all i will say is what ever it was must have been stuck inside me for some time and must have festered. When the ambulance came to pick me up i was in 2 minds whether to go or not as i was now getting the runs and only liquid was coming out. When i was in the ambulance i could feel that i still needed to go to the toilet but had to hold it in for almost an hour as we had to pick up 3 more patients before i got to the hospital. When we did arrive i must have done the 100 meter dash in a record time as i flew to the toilets in a hurry.

When i got to the ward they asked me to wait in the day room until a bed was ready for me, i started to worry and think they were about to keep me in again but it wasn’t the case. When the specialist came to see me he could see i was in pain with my stomach and asked me for an update on how i was getting on and coping. I explained about the trouble i have eating where i get food or drink trapped when i swallow and it takes ages for it to pass through the gullet. I also told him about the bowels and constipation i was getting and how bad it had been. He seemed to agree with me when it came to continuing my treatment as he didn’t want my stomach giving false side effects from any new medication we would try so we need to get to the bottom of why it is so bad all the time. He has now referred me for an endoscopy to take a look down the throat and gullet and see what is going on. I am really happy he has taken this step as it will be a lot off my mind but at the same time i am dreading the procedure as it doesn’t sound pleasant at all having a camera shoved down the throat.

I now have to book an appointment with my doctor for her to start looking into my bowels with a bit more detail and even refer me for a colonoscopy to take a look at what the bowels are doing and why i am having so much difficulty. At least this way they can see exactly what is going on and why it has been causing me so many problems for so long. It’s yet another procedure that i don’t really like the sound off but have to put up with if i want to get some answers as to what is happening to me. I am slowly coming to terms with the fact that the condition i have, CH, is not curable and i will have to keep experimenting with different medication until we find one or more that give me back my control and life and keep the attacks from appearing. What i can’t stand is not knowing why my bowels are giving me so much trouble and what is causing it all?

Today i had to go back to the hospital to have a heart monitor put on so they can monitor my heart rate and rhythm for 24 hours to see what is going on, if anything, and why i keep having a racing heart. Normally this wouldn’t worry me but just lately i have been getting chest pains along with the increase in pulse rate and suddenly break out into cold sweats. I am hoping it is nothing and probably the medication causing the trouble or even the problem i am having with the bowels could be contributing to it also. Lets hope with all these tests they are dong they will finally get to the bottom of things (excuse the pun) and find out exactly what is going on.

It’s like carrying a ladies purse, walking round with the monitor. It is placed in a small shoulder bag and wired up to the sensors on the chest so it can monitor the heart beat and rhythm in real time. You also have to fill in a daily diary so they know exactly what is going on. The idea is that they will be able to notice any slight changes in the hearts rhythm that wouldn’t normally get noticed in a normal ECG test. I am hoping that there is nothing to be found and that my heart is OK. The trouble is my farther and his farther and so on down the male side of my family have all suffered with heart problems.

My farther had a ruptured aorta, this is one of the main arteries that feeds the heart and he has also had angina to go with it. My grandfather also suffered heart problems and had to have a triple bi-pass due to him also suffering from angina, as well as my great grandfather who, apart from pickling himself with rum, also suffered heart problems and eventually died from it but his condition was made a lot worst by his drinking. I am praying i do not follow in the footsteps of my farther, i know that’s not a nice thing to say but when it comes to my health i have had enough bad luck to last me a life time and i don’t need any more complications coming along and making it even worst.

Well i am now praying that with the other tests the doctors have referred me for we will now get the answers we have been seeking as to why i have been suffering so much over the last couple of months. It is strange how the body reacts to different things and i understand that the medication i am on can cause different side effects but the problems i have been having have been made worst by something other than just the medication. My bowels have become a lot worst than they were when all this first started and have caused me so much discomfort it’s unbelievable. Today they have started to get a bit better and i am no longer in agony. It could be because my bowels actually opened and i managed to go to the toilet properly, again something i haven’t been able to do for a few months now.

Let’s hope now things have started to move it will improve over time and all the pain and suffering will eventually stop. At first i though i had a nasty infection that just wasn’t shifting but realised that surely they would have spotted and infection when i was in hospital having all those tests, The amount of bloods i had to give for different testes was just crazy, it was like being treated by a vampire. Nothing showed up in the blood tests so what ever infection i may have had was no longer there that was for sure. I was a bit shocked that i ended up catching an infection when i came out of hospital and ended up with enflamed glands and a really sore throat. The infection only lasted a week and with the help of antibiotics it soon shifted but left me with the bowel problems once again as antibiotics, like other medication, can cause constipation and when you are already suffering it makes it ten times worst.