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.

Attacked by the beast again, but feeling much better!

Finally after 3 or 4 weeks of hell my stomach and bowels have decided to play ball and for the first time in ages i have woken up with out pain in my stomach and sides. Even the wind has started to go down slightly making it more comfortable for sitting and moving around. I am still getting pain when i need to pass the wind but this is normal and i will get it until i manage to get rid of all the hard wind that is travelling around my insides causing the aches and pains when it hits internal organs. I am also still getting some pain in the back especially when i move about but i think this is down to he head attacks and neck as i had an attack early this morning.

Just as one thing starts to get better something else comes along just to soil it like the attacks. I actually woke up with out pain this morning and it wasn’t until i was wide awake having my breakfast that the attack started to build. I can only assume that it was down to the neck that started off the attack as my neck has been sore the last few days and grinding when i move my head around. Sometimes when i wake up and move my head across to the right side quickly my neck will crack 3 or 4 times. I think this is down to the way i sleep as i need 2 or 3 pillows in order for me to get to sleep or i don't feel comfortable. I have tried sleeping flat and even with just 1 pillow but always end up with a restless night. The cracking of the neck is probably down to arthritis as my mother suffers from a few different kinds and we were told it is hereditary. Something else to look forwards to later in life.

Talking about later in life illnesses, the Cardiac Services at Heath Hospital have called me in for an appointment to have an AECG. This is where they will attach a monitor to me for 24 or 48 hours to monitor my heart and see why i keep getting a high pulse rate and what i can only describe as panic attacks. When i had my bloods tested i had very high cholesterol and have been on medication since. Due to the fact that my father and his father and so on, down the male side of the family, have all suffered from Angina or Heart problems, and attacks, they feel that i should have a full check up.

They have already done ECG’s whilst i was in hospital and a full tracing of the heart and lungs to check the blood flow was correct and tested my bloods for the oxygen levels. To be honest they have been brilliant when it comes to the heart and have checked me for everything. At least i know that by changing my diet and using the medication i will avoid any heart problems that could have developed later. Also with the final test’s they will be able to advise me what i need to do to avoid any further problems with my health. It’s bad enough having to deal with the beast all the time and then when other things start to go wrong it feels like a down hill slide. Thank god this is the first day i have been feeling much better and am praying i continue to improve from now on in.

With all this lovely weather over Easter i think i need to get out and do a bit of fishing so am planning a trip towards the end of the week at one of the local Carp fisheries. I have been wanting to go fishing for the last couple of months but haven't managed to make a start due to the health being so bad at the start of the year. Now that i am feeling better i can get out and crack on with my fishing adventures around Wales. There are so many different places i want to visit all set in beautiful surroundings and they offer some of the best fishing in the UK so i really can’t wait to give them a try. Fingers crossed, let’s hope the health continues to improve and i can now get this beast under control for a while.

A break from the beast… let’s get out and about

Thankfully it’s time for a break from the beast as i managed to lay in until 8am this morning and wasn’t woken during the early hours as i normally am. I am still having problems with my bowels and stomach and i am still blowing up like a balloon and ending up in agony as the wind travels around my internal organs. I still feel a little strange after having the infection straight out of hospital but i am feeling a lot better than i was. If the throat hasn’t gone completely by the bank holiday i will book another appointment with the doctor to try and find out why it hasn’t cleared and why i am still having so many problems with the bowels.

I have resorted again to using laxative drinks in order to get my bowels moving as i am constipated again and just can’t seem to go to the toilet even though i feel like i need to go the body just doesn’t seem to want to play ball. Each time i try and bare down it feels like there is no strength left in my muscles in order to push out and it becomes very frustrating and uncomfortable. The last time i was like this was when i tried the Verapamil medication and  suddenly blew up like a balloon and was rushed into hospital. I am praying it doesn’t become that bad again as it was one of the most embarrassing things i have been through.

As to why my bowels are still playing up i can only assume it was down to the medication the hospital started me on and that it doesn’t seem to agree with me. I suppose it is the kidneys and bowels that will take the brunt of the problems as they try and clear out what ever medication or drug that doesn’t agree with the rest of the body making my bowels worst than ever before. This is all speculation and guess work as there is no other reason i can think of that would make me so uncomfortable and have so many problems trying to go to the toilet. I am not taking any other medication that could cause the problems apart from the Pregabilin that i decreased to 100 mg (50mg twice a day) to stop any side effects causing me further problems.

I am hoping that with a break in the attacks and the weather turning nice this Easter i will be able to get out and about a bit more and even go fishing finally after putting it off for 2 months due to problems and illness. Just to be able to get out in the fresh air and walk about is brilliant let alone going to do something i love like fishing. Brian, my stepfather, has decided to go fishing today at Peterstone lakes. I was going to go with him but my stomach was so bad yesterday i had to cancel. If i can just get it under control again i will be able to get out a lot more.

I am not so worried about the attacks when we have the warm weather as the cold wind doesn’t set them off as much as it does in the winter and having my injections is enough to deal with the attacks when i am out and about. it’s only when i have multiple attacks starting in the early hours i end up locking myself away in doors not wanting to go anywhere in fear of having loads of attacks all the time. Today i think i will try and get out and visit a couple of friends just to get me out and about again. Then if things go ok today i may even go fishing tomorrow and the rest of the week as the weather is forecast for a very sunny and warm week and weekend.

Woken by the Beast and feeling it ………

Again the Beast attacks with sharp pain from behind the eye shooting over the top of the head into the neck. So sharp all you want to do is rip your head open to release the pain from inside. Water streams from your eye and your nose becomes blocked on the left side of the face. A small ridge swells up and appears over the top of my head leading from the scar at the front right over the back into the neck. It feels as though you have something stuck in your neck and every movement causes it to grind. Sharp pain shoots down the beck as the pain in the neck seems to set something off and the pain spreads down behind you left shoulder blade. All this happens in seconds and you have only just opened your eyes, wide awake and in agony.

No matter how many attacks you have you never can get used to the level of pain you get in and how bad it makes you feel. Knowing there is nothing anyone can do or give you to take away the agony and all you can do it ride the pain out and pray that it ends soon. Constantly wondering if its going to be your last ever attack and that the body can’t take much more. Living in fear of the attacks all day long, scared to go any where in case the beast appears. Trying to avoid crowded places and rooms and even transport, opting to walk rather than jump on a bus because you are afraid the vibrations will set of an attack and then have to deal with it stuck on a bus. Its really horrible to feel this way all the time and very hard to think of positive things when you are in so much pain, day in day out.

Being in hospital shook me up a bit and made me realise how precious time really is. Watching people recovering from strokes and other terrible conditions gave me food for thought. I know my condition is not curable but at least there are drugs that can be taken to help relieve the symptoms and agony and hopefully put it in remission. There were a lot of people in hospital that couldn’t get help and would be in a wheelchair for the rest of their lives. Also many that have terminal conditions that they are under constant treatment for. I was shocked to catch an infection the very day i was released from the hospital mind you. Also ending up having problems with yet another medication was also a kick in the groin. So far i have tried 3 different medication combinations and all 3 have failed or had problems.

I do sometimes wonder is it worth all the problems with all the messing about with different drugs and the side effects and agony it keeps putting me in. I have ended up with major problems with my bowels  and am producing wind at a crazy rate it’s blowing me up like a balloon. Constipation so bad that laxatives have become part of a stable diet. Also back pains so bad its like watching an old man trying to move about. I have been on antibiotics for the last week but still seem to have the illness so looks like i need to go back to the doctor to see if i can get something else to try and shift it. I have also been given some multi vitamins to try and improve my immune system as it is very low at the moment and as i am just coming off steroids its important to try and stay healthy as they can reduce your natural defences.

I was going to go fishing this morning with my mate John as we have been dying to go for a while now but i had to cancel as my stomach is that bad today. He has decided to go on with out me and meet up with another mate and see if he can catch some tidy fish at one of the local ponds at Pentwyn. I really wish i was going with him as al my gear is set up ready to go. If i could get my stomach and the wind under control i can get out and about, and doing a bit of fishing, and being out in the fresh air and sun, will do me the world of good.

Still being attacked by the beast…slowly getting better!

The start of this year has been a difficult one for me with regards to the condition i suffer and the amount of attacks i get. Normally as winter ends and spring begins i see a huge decrease in the amount of attacks i get in a day or week but for some reason this year it has been delayed. It could be due to the very mild winter we have had and as it wasn’t as cold as previous years there wasn’t such a dramatic change in the seasons as the warmer weather came. Thankfully they have started to decrease in number and i am finding i have more time in between attacks to recover and just get on with every day things. The attacks are still bad and i am averaging about 3 per day at the moment witch is a huge improvement to the 6 or 8 per day i was getting. I am still getting the early morning wake up call from the beast and no matter how hard i try and avoid it, and try and keep the flat warm at that time of the morning, i still seem to end up getting an attack during the early hours.

Again i have had to stop the medication the specialist have tried due to side effects and problems. Since i came out of hospital over a week ago i have been really ill. Not only was i suffering from side effect of the medication, and having panic attacks every hour, i was also suffering from catching an infection that made my glands swell up and gave me one hell of a sore throat. My stomach feels like it has been burnt inside and is red raw to touch. When i pass wind it feels like i am passing flames and burning through my clothes. What ever infection this is its a nasty one and i am now on antibiotics on top of all the other medication i am taking.

After being in hospital and taking loads of pain killers for a couple of weeks it has taken its toll on my bowels and they are worst than ever before. How people can go on everyday when they suffer from IBS is beyond me. When i get wind it always seems to travel around my insides causing me agony all the time and feeling bloated is the most uncomfortable feeling i have ever had. I had bad constipation when i was in the hospital and when i managed to force my bowels open i ended up passing lots of blood as whet i passed was hard and the size of walnuts. This probably caused a tear in the lining as i don’t suffer with piles and as soon as i informed the nurses i was put on laxatives and Senna to try and get them under control. The only trouble with laxatives is that for some reason it makes me blow up like a hot air balloon and i end up in pain from the wind. Talk about having a fussy system.

I am hoping with all the nice weather forecast over the Easter holidays, and the fact that they recon we are going to have a brilliant summer this year, i am going to try and get out and do some fishing at last. I have been late starting this year and there are loads of different venues i want to visit but due to the attacks i have delayed everything. I am now hoping that the decrease in attacks is my signal to start and i will be able to get out each week at a different venue and see if i can get myself a new personal record size fish. I have been so looking forward to starting my fishing this year mainly because of all the problems i have been having and to be able to get out in the fresh air and have a break from feeling ill all the time doing something that you love and enjoy. This is better than any medication or miracle cure, just to be out in the fresh air and sun taking in all the vitamins and making you feel 100 times better.

I am half way through my antibiotics course and have started to feel much better than i was yesterday. I am still suffering from the bowels and wind but the sore throat has eased a little and the glands have gone down. I am getting cold sweats every now and again but that's only to be expected with a viral infection. I am now back on the Pregabilin medication and have stopped the Lithium due to the problems i have had. I am still using the Sumatripitan injections when needed and Oxygen to help reduce and stop the attacks.I am now on the last leg of reductions with regards to the steroids the specialist put me on whilst in hospital so only one more week and they will stop. I am now booked to see the specialist again on the hospital ward on the 29th of this month. They have booked me on the ward so i don’t have to wait for appointments and they can get on with my treatment quicker. If i was to wait until they made an outpatient appointment it would be 3 to 6 months in between treatments and by doing it this way i am only waiting 2 weeks maximum.

All the illness’s are taking their toll ……..

Yet again i have been woken by the beast in the early hours due to the temperature dropping and me feeling a cold band around the top of my head. Since i have been back from hospital i seem to have gotten worst. I have an infection of the throat and glands and also my stomach is really bad. Not only am i constipated but even passing wind makes it feel as though i am on fire. Talk about torture from all areas. If its not the head playing up its the back and if not the back its the stomach and wind and on many occasions its all three together. I have never felt so ill in my life. I have another appointment at the hospital tomorrow, thank god, i will have to see what the specialist makes of all this. My luck when it comes to my health just lately is very bad and i just can’t seem to cut a break.

Its been ages since my last fishing trip so not getting out in the fresh air has been getting to me and making me feel low all the time. With the illness as well as the pain i am in all i can do is think of the worst and can’t seem to focus on anything other than my health. I need a break from it all. Maybe as soon as i am feeling up to it i should book myself a short break at a nice fishery and spend the weekend doing something i love. The weather is set to warm up really fast at the end of the week and the weekend is looking to be a nice start to summer, early this year. Normally when we get the warm weather my head and attacks usually calm down and i can go longer periods with out an attack.This year it has been delayed and i am still getting the same amount of attacks as i did in the winter.

I am hoping that the doctors will be able to find out exactly what is going on with me and why i feel so bad all the time. Tomorrow i have arranged the ambulance service to pick me up and take me as i don’t think i will make it by bus. Sometimes the vibration on the bus can set off attacks and i end up having loads in public. It feels so embarrassing when having an attack out in public as people can see you screaming in agony, rubbing your head where the pain runs as if you are trying to rub it better. Then, when people see your face slightly swollen and drooped on the left side, they assume you are having some kind of stroke or fit and offer to call an ambulance. I know they have the best of intentions and are only trying to help but when you are in so much pain all you want to do is be left alone and pray for it to stop. Sometimes it gets so bad you even pray for death to come quickly.

I have to admit i am doing very well when it comes to my depression and the bi-polar side of my personality. Normally its the end of the world with no sight of help but for some reason i have managed to keep my head above water so far. Ok i admit the pain gets to me all the time and feel so ill just lately has really blown me away but i still think there is help out there and that it won’t be long before the specialist finds the drug that will help put these attacks to sleep or at least find out exactly what’s causing the problem’ and why the attacks have been aggravated so much. I am praying it doesn’t take too much longer as every day that goes past i feel more and more drained of energy. I really don’t knowhow much more my body can take. Fighting the attacks and now fighting a virus on top of it all is making me feel so run down and tired, yet i can’t sleep as the attacks seem to come during my rest. Let’s hope we get a few answers now the hospital has all the scans and results.

Just to top things off i now have a nasty throat infection… give me a break!

Ever since i came out of hospital i haven’t been feeling quite right and now to top it all off it looks like i have gone and got a nasty throat infection. Over the weekend my mouth became so sore i couldn’t hardly drink or eat anything and my stomach is hurting so much its like having constant cramps. I decided to run over the doctors this morning just to be on the safe side and also refused to take my Lithium tablets just in case it is them that is causing all these problems. The doctor took one look at my mouth and felt my throat and said oh my god your glands are swollen and your throat is red raw. She then immediately issued me with some antibiotics and also some lactulose solution for my bowels. I now have to take Penicillin 500mgs 4 times a day on top of all the other medication i am on.

Again the beast decided to pay me a visit during the early hours and has been playing up all day. I think its because my immune system must be battered at the moment with this infection and i hope that with the antibiotics it will improve soon. My body feels so weak and everything inside me feels sore. My stomach feels like have have eaten glass, my throat is so sore i can hardly swallow and my head keeps throbbing to the beat of my heart. At first i thought it was down to the new medication but the doctor is trying to say its just down to bad luck. Surely my luck can’t be that bad that 3 different types of medication all had a bad effect on me and now i am paying the price. I don’t want to take any more medication until i have spoken with the specialist on Thursday as i have an appointment to go back to the hospital for blood tests and to check on my levels.

If the specialist feels that i should continue the medication then maybe i will continue it but until i have seen him there is no chance on this planet. It has really made me feel ill and i always thought you go into hospital to get better not worst. I suppose as i was run down anyway it was easy for me to pick up an infection or illness and now i have to try and get myself well again. I can’t believe that after everything i have been through so far i still have to suffer and continue to fight for my health. It bad enough having to deal with the CH and attacks always happening and then to have to deal with infections and illness on top of all this is just one illness too many. I am really hoping that this infection lifts soon as i don’t know how much strength i have left.

All i have wanted to do since i got home is go fishing but every time i feel that i am up to it something else comes along to throw a spanner in the works. When i am fishing i feel completely relaxed and it helps to keep me calm even when i have an attack. Now that i am home from the hospital i fancied a day out fishing but it looks like i have o delay once again due to the nasty infection i now have. It’s been a late start to my fishing this year but am positive as soon as it starts there will be no stopping me i just have to get myself well enough to make that initial start in the first place. Let’s hope that this bug or virus or what ever it is doesn’t last long and will be out of my system soon. maybe then i will have a fighting chance to get myself well again and get on with my life….. fingers crossed!

Home from Hospital but still feeling very ill …..

Unfortunately just over a week ago, after having an attack from hell, something happened to my neck that pinched a nerve or trapped something that caused my attacks to go off non-stop. Attack after attack, hour after hour of agonising pain until finally an ambulance came and rushed me into hospital. As soon as i was there they started giving me strong pain killers but nothing was helping to stop the attacks. They then placed me on lithium and steroids and finally the attacks started to become under control once again. So now i am on Lithium tablets and have to have my blood checked every 2 weeks as well as the pregabilin tablets along with all the other medication to see if it will eventually take control of the beast and stop the attacks from happening.

Since i have been home i have had 5 attacks already. Now when i was in hospital they calmed right down and i was getting more rest in one week than i had in a whole year. now that i am back home its back to the same old routine. I am slowly decreasing the steroids as i have to come off them within 4 weeks and also slowly decreasing the pregabilin tablets as they give me real bad side effects. The trouble is by decreasing the medication i am seeing more attacks than i am used to and just to top it all off my bowels have decided to really play up and i have constipation like i have never experienced before. I am bloating up like a balloon and my stomach is in constant pain. I am still able to eat and drink and i can pass fluids but have trouble when it comes to opening my bowels.

I think most of it is down to all the medication and pain killers over the last 2 weeks and its now having an effect on me. Hopefully by not taking anymore pain killers this will start to sort itself out but i am not going to take a chance and will be booking in to see my doctor urgently tomorrow morning as i feel worst than when i actually got admitted into hospital, surely that's not right.

I have to say they were brilliant in the hospital they were checking everything to see if they could find out what is happening. Now that they got the head back under control they didn't need me taking up a bed that is used for emergencies only and i now have to go back as an out patient for all the other investigations they are doing. They are checking my heart as it keeps racing off on its own accord and even after having treatment in the hospital it still keeps doing it. They also have to check where i am with my head and how many attacks i have been getting over the last week and then maybe we can try different medication to get it sorted. I now need them to find out why my bowels are so bad and why they are playing up as i am constantly uncomfortable and getting pains up and down my back.

The hospital have run all the tests they needed to including 2 different MRI scans of the top and bottom of my spine and hopefully they will be able to find out why all these problems in different areas are appearing. It just feels like ever since i was diagnosed with my condition its been a down hill slide and i really need to try and get on top of things. If this continues i am not going that have the strength to get well as i am constantly fighting attacks and pain all the time and i am sure most people come out of hospital feeling better not worst.