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.

A break form the beast and a relaxing weekend….well one can only wish!

Friday 25th April

Thankfully i have managed a couple of days with out having any major attacks and it seems like my back has got a bit better as well as my head. I wish i could say the same for my bowels. I am still having trouble and am still very constipated and can’t seem to go to toilet properly. Even when i try and pee it seems like i have to put an awful amount of effort into it, where as before i could stand and take a pee like any normal man but since i have been having problems i am unable to do this and have to sit and strain in order to pass water.

I am hoping i continue to improve from now on as the wind seems to have gone down a bit. I still have air pockets underneath my moobs, that have appeared ever since i bloated up the first time. Normally i am quite slim and athletic but over the last couple of years that seems to have gone out the window and i find that i am putting on weight even though i don’t eat that much food. I am lucky to have more than 2 meals per day as normally i miss out on breakfast as i never seem to feel hungry first thing in the morning. It is something i have to start doing on a regular basis i think and start making sure i have 3 regular meals each day and make sure i eat the right type of foods instead of quick and easy meals all the time. You could say my diet is terrible as most of the time i am eating TV dinners and there just isn't the goodness and nutrients in the food that the body needs.

I booked my transport to the hospital today ready for Tuesday for when i go back and see the specialist and see what the next step is in trying to get my attacks under control. I have also booked my transport for the first of May for when i get a heart monitor fitted so they can monitor my heart for 24 hours top determine what is wrong, if anything, and try and get to the bottom of why i keep on getting a racing heart for no reason. I don’t have to do anything in fact it comes even when i lay down to go to bed. All of a sudden i will be able to feel my heart beat right through the whole body and it starts to race off on its own. I have to lay there and try and concentrate on my breathing so not to send me into a panic attack and make things worst. This usually helps and i end up just falling asleep when it has clamed down.

After doing lots of research on the internet about my condition i managed to come across the migraine clinic in London that claim to be able to do a medical operation that could cure me from my condition. If this is the case then why hasn’t my specialist offered me such an option. They seem to believe its one of the main nerves that goes up the side of the nose, behind the eye and over the head and it does sound like the attacks that i get. he trouble is this procedure costs a lot of money and there doesn’t seem to be any funding for it. They say they give you a Botox toxin test to see if the long term operation will actually work for you before you even get accepted for the operation and this test alone costs over £300.

If you are successful and accepted for the operation it then costs a couple of thousand pounds for all the treatment and after care that is required. It is possible that this is just a scam to make money out of those who are suffering like myself but i am going to pull it up at my next appointment with the Neurologist and see what he thinks. So far he is the only one that has managed to give me any help with my condition and been able to give me the correct medication in order to manage my condition. Ok i may have had a few set backs with some of the medication we have tried and the side effects they have given me but at least i am being seen regularly and if there are any problems they are there to help me out. 

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Saturday 26th April

So much for a nice long break! I was again woken by the Beast this morning in the early hours once again. It was around 3am when the beast decided to come calling and once again i woke up not feeling one bit tired. I was just suddenly wide awake and it took a few seconds before i realised why i was so awake. Then suddenly the body burst into cold sweats, the left nose started to become blocked, the neck started to get sharp stabbing pains right at the join where it meets the spine. Then suddenly the sharp pain appeared behind the eye and into the top of my jaw. Then , as the pain become stronger, it spread over the top of my head following the scar on the left side of the skull where it was split open many years ago. The pain the joined the neck pain and started shooting pains to appear in the top half of my back stretching under my shoulder blade. Also i was getting sharp pains stretching across the front of my chest towards the heart making me feel like there was a muscle cramp. All this happens in just a few moments and the pain feels like it is going to last for ever.

I know why the attack started as once again i could feel a cold band around the top of my head so i can assume it was the cold that once again set it off. I have also been getting some sharp pains in the neck for the last 2 days and thought it was from sleeping awkward or tossing and turning during the night whilst asleep in bed. I haven’t done anything to injure myself so can only assume it is the same thing that caused me to be rushed into hospital last time. If that is the case then i better take it easy for a couple of days as i don’t want it setting off attacks all the time again. I don’t think i could go through all that again, i just don’t have the strength. Thankfully the injection managed to get control and abort the attack but i still had to ride out at least 20 minuets of agony but that is so much better than having to ride it for 1 or 3 hours. By the end of it you are so drained and tired you actually welcome death. Just to be put out of your misery and not have to be in so much pain all the time is a wish that is looking less and less obtainable as each month goes by.

It does get to you some times, having to deal with several attacks per day and knowing that there is nothing anyone can do about it. Also knowing that there is nothing you can take that will stop the pain or even reduce it. I have tried every drug known to mankind in order to try and deal with the ain but as a very wise doctor said to me, you can’t treat pain only supress it, you have to treat the cause! He is so right! I have been to hell and back trying to deal with my condition and get control of the pain but nothing has worked and all that it has done is slowly strip away my life. It didn’t help being bi-polar i suppose as everything can seem a lot worst than it actually is. In this case i think i am justified in the way i feel as to have a condition that has no cure is a night mare and i would wish it on my worst enemy. I am just praying that when i see the specialist next week he will have a plan of action and a new drug to try and hopefully i wont get so many side effects as i have done with the last 3 attempts. I have been so unlucky when it comes to my health it is beyond belief.

The weather has been very strange this year as we had a strange start not seeing any kind of real winter. it seemed as if winter had forgotten to show its face and spring came early. Even though we have had warmer weather at the start of this year we are still seeing a very wet April and May and this can cause my head havoc. The low pressure fronts that bring the rain and colder weather always seems to cause my head to play up and increase the number of attacks i get. I am hoping that with the pre-forecast of an Indian summer, or at least a very warm one, i will get less and less attacks as the warmer weather approaches.This will also mean i will be able to get out and about a lot more and get one with some fishing. I haven’t really started my fishing properly this year due to all the problems i have been having but i am hoping that as my stomach and bowels start to become better and better each day i will soon be able to get out a few times a week and really get some fishing done.

A nice lay in to recharge the batteries…..

Thank god i managed a nice lay in this morning and wasn’t woken by the beat during the early hours. I didn’t get any feelings of pressure on the side of the head or did i get an shadows lasting through the day yesterday like i normally get when i am having attacks. The shadows can be just as annoying as the actual attacks as when they appear you know what's going to follow the shadow and is only a matter of time before you are in pain and agony. It’s nice to actually have a lay in bed for a change and re-charge the batteries, so to speak. Getting up in the early hours all the time takes it out of you and there are some days where i feel like the walking dead.

Even though yesterday was wet, grey and miserable i didn’t have anywhere near as many attacks as i thought i would have. Normally when the wet weather comes and low pressure fronts come across the country it always seems to effect my head and make it play up something rotten. Thankfully it wasn’t as bas as it usually is and i managed to get away with just the odd small attack and some strong shadows. It is still a big improvement compared to last year and the year before that. When ever the summer months come i normally get less attacks due to the warmer weather and less low pressure fronts hitting our part of the country but as winter returns so do the attacks.

I have still been having big problems with my bowels and constipation. I am producing more wind than a turbine and am in constant agony all the time just lately when it comes to my stomach. I have what feels like tense muscles on either side of my stomach  and my back aches like i have a kidney infection but there is no sign of infection in my urine or bloods as i have numerous tests done both at the doctors and the hospital when i was rushed in. Why my stomach is doing this i don’t know and i have tried everything i know to get rid of the wind and try and ease the pressure in my stomach so it doesn’t ache and feel uncomfortable all the time.

I have noticed the last couple of days that when i go to the toilet to open the bowels i can’t actually feel my stool coming out. It could be because it is so soft it is actually like toothpaste. I was given some Fibergel from the doctors to see if that will help along side the lactulose solution and try and get my bowels working normal again. It could also be because of the muscles in the back. Each time i get an attack i noticed that the muscles in the back keep on playing up and are tense all the time as i am in pain. Then when i try and open my bowels i don’t have enough strength left to push out the stool. If it continues i will have to go back to the doctors once again and see if there is something they can do as this has been going on too long now and i can’t get on with other things whilst this is playing on my mind all the time.

I am due to go back to hospital on the 29th April to see if we can find another drug that will help with my head and get these attacks under control but whilst i am having problems with my stomach and bowel i think its really a bad idea. If it causes me any side effects they may think my bowels are down to medication and make things worst. I am also booked in for May 1st to go and have a heart monitor put on me for 24 hours to see if i have any problems with my heart and try and find out why it keeps racing off all the time. I am also burning up every now and again, i don’t know if it is connected with the bowels and stomach but it seems weird that i suddenly break out in sweats even though i am not having a CH attack. 

A short break is better than none…

It didn’t look like i was going to get much of a break from the beast as i only managed a couple of days attack free before i was again woken by an attack from hell this morning at 3am and then again at just gone 5am. Again i woke up completely wide awake and not feeling tired when suddenly the attack came. Suddenly breaking out in sweats all over my body as if someone had thrown a switch, then the screaming agony came from behind the eye shooting over the top of my head and into me neck. Sharp pain kept on shooting over the head and down the back on the left side, just behind my shoulder blade. No matter what i tried i could not ease the pain. Sometimes even taking the injections isn’t enough to abort the attack and you end up having to ride the pain out for at least 20 or 30 minuets and then as soon as the injection takes hold the attack is over just as quickly a it started.

With the weather being so nice this Easter holiday i decided to go and do a bit of fishing up at Pentwyn lake, one of our local fishing spots. Unfortunately the day we decided to go the clouds decided to stay and it wasn’t as sunny as the rest of the week. When we got to the lake there was a couple of people fishing there but no fish were being pulled out of the water and that seemed to be how it went all day long apart from my step father managing to catch a nice size carp and bream. I tried a few different baits but as my back was in agony and the head kept on threatening to play up, by lunch time i decided to give up and go home. I will have to arrange another fishing trip as soon as i get my back and stomach under control.

My bowels have been causing me murder for the last few weeks. Ever since i was in hospital and i tried the lithium my stomach has been playing up really badly and has been causing me a lot of pain and discomfort. I am taking tablets for IBS and also laxatives to help with constipation yet i am still having major problems going to the toilet and the amount of wind i keep building up is not only embarrassing but also very painful at times as it keeps moving about the body and trapping in the most awkward of places.

2 more weeks and i am back at the hospital to continue with the treatment for my attacks and to see what other medication they can try in order to get them under control. I am also hoping that the physiotherapy on my neck and back will also start soon as they have been playing up something rotten and something needs to be sorted out. They will also be putting me on a heart monitor for 48hrs to try and find out why i keep getting a racing heart and a feeling like i am having panic attacks all the time. Since i have stopped the lithium the worst seems to have settled down and could be something to do with the medication but i think they want to double check just in case there is something else causing it.