Again the Beast attacks and leaves you praying for death….

At first my eyes opened and i was wide awake! Not even feeling slightly tired i sat up in bed and though here goes and waited but nothing! No aches and pains and no sign of the shadow, the pressure feeling i get on the left side of the head. This was strange. I didn’t want to go to the toilet and i couldn’t think why i would wake up so suddenly. I looked at the clock and it was 2.30am so i though i would just try to empty my bladder and then go back to sleep and see if that worked. I managed to get back to sleep after a short period of time tossing and turning but was then suddenly woken by the beast!

This time it was a raging attack that had me running back and forth from one room to the next not knowing what to do with myself. the pain was so bad all i wanted to do was take off my head. Just chop it off to end the agony. I could actually picture my head on a chopping block and someone decapitating me with a large axe or blade. To wish for something so crazy when in pain amazes me as you become so desperate you think of some crazy ideas. The pain becomes so bad and so strong you want to split your head open as if to release the pressure or let the daemon out. All you want to do is just rub it better but you can’t get to it. Luckily after 10 minuets of agony the injection kicks in and the attack stops just as sudden as it starts and you are pain free again although suffering from shortness of breath and a feeling like you are about to experience a heart attack due to the injection.

After this attack i was exhausted and just wanted to sleep so a lay back down on my bead and must have drifted back off to sleep. Now this is rare as normally after a big attack i am unable to go back to sleep even though and my energy is gone i always seem to get aggravation from the back and the neck causing me pain and stopping me from dropping off. It was good to get a bit of extra rest after an attack and i just hope it was a little longer than it was as suddenly i was again woken by yet another attack by the beast. When i looked at the clock it was 5am and that was it i just gave in to the beast and had to ride yet another attack.

3 Attacks before the day starts and that’s 1 with nothing except a wake up call and  2 bad ones. I was unable to take an injection for the 3rd one as i used one of my injections on the second attack but didn’t make a note of the time so i ended up just having to ride it out for well over an hour and i am talking pain like no other it was a full on attack, swollen eye sore neck and pain full back. The worst is the pain that goes over the head and behind your eye. What ever nerve it is its the worst one in the body to get a problem with. I am praying the specialist will be able to find something that will stop this from happening as these attack can become very scary and at time you think you really are going to die and instead of fearing it you start to welcome it  and that's not a good way to be in. You know you are in serious pain for your mind to start to think this way.

Managed to sleep through but with a price….

With the strong shadows continuing through out the the day on Sunday i decided to have a day of rest and ended up going to bed very early at around 5pm in the evening. I am so glad i did decided to have an early night to catch up on the sleep i had lost over the week due to the beast waking me up in the early hours. I am so happy as i managed to stay asleep right the way through until 8am this morning and woke with no shadows or any sign of the beast so far. The only trouble with staying in bed for so long was the effect it has had on my back. When i tried to get out of bed when i woke up this morning i was in agony and could hardly move my back. I ended up having to roll over in bed and literally fall out of it as i just couldn’t bend my back. After 20 minuets of suffering and trying to bend the back slowly it suddenly released and returned to normal. It felt as if the muscles had all locked together and just didn't want to move and when i tried to force it it gave me bad pains on both sides of the lower back on either side of the spine. I don’t know what had caused it apart from over sleeping but i am just glad its gone and hope it doesn’t return.

I have started having problems with my back and walking ever since the head attacks turned to a daily feature and along with the pain from the beast i also get trouble walking. I used to think it was the medication causing it but as time has gone on and my medications changed i am still getting trouble and it is getting worst. I am now even getting trouble with my arms, strange, but as i am typing the area of the shoulders and the under arms are aching like crazy and i have to drop my arms to my sides to rest for a while before i type my next bit of the blog. I can only assume it must be something to do with what ever is causing me back problems as i can feel the muscles pulling and the aches and pains as i move and type. If i sit and try and twist in my seat my back starts to hurt and the pain returns so i have to try and sit as still as is possible but this makes things very uncomfortable. I have never had problems lifting my arms before and it feels like i just don’t have any strength to hold them up but i know i have had plenty of rest and other than the back and arms playing up i am fine, and the head is behaving itself.

Fingers crossed i should get my appointment with the specialist this week and will be able to get some extra help with everything that is going on. It is really starting to worry me as my movement is becoming very restricted and my back more painful as time goes on. Each time i have a big attacks in the head i end up virtually paralyzed as it is just too painful to move. It seems to take days to recover from a bad attack instead of just hours like before. This is showing and telling me that things are slowly getting worst and its not until you sit down to write your blog and look back over older notes that you realise that you are getting a lot worst than when you started your blog. I am just praying the specialist will be able to help and hopefully have some answers as to what is happening to me and why my back and movement is now paying the price for my illness.

The Beast has taken away my strength….

All day Saturday I suffered with strong shadows and the occasional attack from the beast but assumed it was down to the sudden change in weather and the storms we are having in the early hours. I was again woken this morning at 3am by the strong shadows and i have been awake and suffering every since. To be honest i didn’t really get any sleep apart from a couple of hours during the night where i must have dropped off despite the head aching and thumping all the time.

Normally after a weather change the attacks always seem to calm down and the shadows ease away after a couple of days but for some reason this year is not happening and i am suffering with the shadows more often. I should be grateful that the attacks have reduced to the number they have as if i was still as bad as i was in the Winter i don’t know what i would do. The trouble with the shadow feeling all the time is that you know it is leading to an attack and is only time before you are battling with the beast once again so end up shutting yourself away scared to go anywhere.

I have yet to have a full week where i don’t get any attacks at all and am wondering if my condition is actually getting worst. I seem to be getting stronger attacks and even though we are in summer, where the attacks normally disappear completely, i am still getting some very bog attacks and a lot of pain. My back is also in a lot of pain all the time and also seems to be getting worst. i am finding myself experience more days where i find it difficult to walk and lift my legs. Its as if they suddenly become really heavy and ache with each step i take as if someone or something has given you a dead leg.

All i can do for the time being is wait for my next appointment with the specialist and hope he can help to find some of the answers as to what is happening to me and if they can do something to help. For today i will just have to try and get plenty of rest and see if i can make up for all the lost sleep and hope that the beast is just as tired as me and will let me rest to gain my strength.

Some Times you get Fed Up with being Stuck In

Again i have woken up at 4 am this morning but not from an attack but from the strong shadows and feeling of pressure. To be honest i am not surprised after spending the day fishing yesterday sat on a hard fishing box instead of my comfortable fishing chair. My back ended up in agony by the end of the day and after over heating and getting my arms sunburnt by the end of the evening my head was banging. It felt like someone was hitting it with a hammer and was throbbing from the pain. It wasn’t an attack but a normal headache from the sun so for the first time in ages i took a couple of normal pain killers to deal with the ache but it was the sleep that ended up calming it down.

Although i have strong shadows today i am surprised i am not in more pain. My back doesn’t feel that bad at the moment and the neck is behaving itself. However this could change at any moment and at the drop of a hat i could end up in agony all over not just on the head. I know its starting to cause problems with other nerves in the neck causing these pains as i can actually feel it when it happens. Like an electric shock down the nerve before any pain begins warning me or the agony i am about to endure.

It was strange fishing yesterday as i had the strong shadows for the entire day and was shocked i didn’t have any attack during the day due to the bright and hot sun. i had taken precautions and wore my fishing cap and sun glasses for the entire day to keep the sun off my head and out of my eyes. I had also taken my fishing brolly in case it really did get too much but i didn’t have to use it as there was some cloud cover at times and a haze that was stopping the worst of the sun from getting through. Even though i didn’t end up with sun stroke i found the day to be tough with the strong shadows effect my fishing and i just couldn’t seem to get my rhythm and ended up loosing quite a few fish and became extremely frustrated by the time to pack up.

I did enjoy the day and got plenty of fresh air that did help me to relax a little. Also spending time with my mother and step father Brian helps to break the monotony of being stuck indoors alone all the time scared to go anywhere in case of a big attack. i am connected to the net all the time and also with my mother on blackberry BBM service and pester her on that so i do stay in touch with people but its not the same as seeing them and getting out and about.

The beast is asleep so lets try not to wake it!

Thankfully i haven’t been woken by the beast again this morning or have i had a big attack but last night was absolute murder. I ended up having over 10 attacks yesterday with 8 of them being through the day and then 2 massive one late last night that left me looking at my life in a different light. Again it scared the living daylights out of me and i actually thought i was going to die. No matter how many times i get attacks like that they don’t get any easier to manage. The pain was so intense i passed out twice only to wake up again a few seconds with my head feeling like it was going to explode.

I have woken this morning at 4am not due to an attack but i do have some strong shadows at the moment and a feeling of pressure again on the left side of the head. My neck seems to be ok at the moment although its still a little sore from last nights attacks.My back is normal and i do get small shooting pains up and down the spine when i move but i think that is due to another condition that i am waiting for my referral appointment for to find out what is going on in the back and why i am getting so much pain when i move or walk about.

Today we have decided to go fishing so i am praying my head behaves itself so i can go with my mother and step father as i have been missing my fishing like crazy. i don’t mind having one or two attacks by the waters edge as i can deal with them with the injections but to have a full day of attacks like yesterday i don’t think i would be able to cope. The weather is forecast to be warm with a little sun shining so it should be a good days fishing and i am going to try and see if i can get a nice big Carp out of the water. The lake we are fishing is known as the swan lake up at Peterstone Lakes complex just outside Newport in Wales and has a reputation for producing some big fish so i am really looking forwards to going as it is one of my favourite fishing venues.

Well its only a short entry into my blog today as i have to get myself ready for fishing and have loads to do. I have to go pick up all my medication for the week, get my money out of the bank, pay all my bills and orders and then get my tackle ready to go all by this morning. Should be a fund day rushing about but should be worth it when i catch a few nice fish.

Again i am having to fight the Beast….

Once again i have been woken by the beast at 3 – 4 am this morning with yet another big attack. I actually managed to have time to recover my energy before it decided to attack for the second time. They eye begins to close the pains shoots from behind the eye up over the head into the neck and down the back to the base of the spine. The main pain remains constant over the top of the head but the shooting pain down the spine is only occasional so i can only assume one nerve is touching or pressing on another causing a secondary issue. The eye eventually closes and it feels like someone is trying to scrape it out with a spoon.  Constant pressure on the top of the head with sharp pain all the time and all you can do is rub or massage it to see if you can ease the pain. You can’t actually reach the area the pain is coming from as its deep inside the head and somewhere behind the eye. It always feels like you eyeball is actually on fire and burning and no amount of massaging or rubbing the painful areas helps. You scream in agony as if to try and release the agony and pain but end up falling to the floor , rolling around in pain holding your head praying for it to stop.

You are fighting an invisible force, its as if someone is trying to pull your brain out of your head through your eye socket, you are fighting with the beast. The pain continues to grow stronger and stronger and all you can do is let it run its course and try and manage the pain but its impossible. You bang your head against the ground as if you want to crack it open to release the evil and hope it will go away. The side of the head becomes so tender and your senses seem to increase as sound becomes unbearable so you have to sit in silence and bright light makes it hurt more so you try and stay in the dark. Eventually the pain becomes so bad you end up with ringing in the ears like a TV that's out of tune and all you can hear is the static signal. This becomes so loud it blocks out other sounds and starts to drive you crazy. As the pain starts to reach its peak you start to become light headed and feel like you are going to pass out. I have actually passed out a couple of times before but only for a few seconds and when you do come around you head throbs hard and the pain then returns.

Suddenly the pain stops! Just as quick as it started. You look at the time and realise over an hour has passed but at the time you seem to loose all sense of time as it feels like a life time of agony and pain. For hours after the attack the neck hurts and grinds and even the back becomes painful. Its hard to walk around the flat because the legs start to feel like lead weights and all the muscles ache. Then when you finally start to feel comfortable another one starts to build. Again you have to go through the whole thing again. If you are lucky enough to take the injection and abort the attack some times you don’t have to feel the intense pain but most of the times it takes a while for the injection to work so you end up having to go through short attacks that last around 10 to 15 minuets until the injection takes hold and stops the attack in its tracks. Unfortunately only being able to have 2 injections in a day you begin to pry that no more attacks come as after you have used up the injections you then have to ride out the full attack with only oxygen to help.

I can only assume that the attacks have become so bad due to the strange weather we are having. I know the extremes of cold and heat are 2 of the main triggers that set of my attacks so i think the very hot weather started them off and now the storms and lightning seems to be having an effect on my head and its causing it to feel worst again. I am praying as the heat wave is coming to an end an the weather starts to return to normal i will go back to having more pain free days again. Normally this time of year my attacks become very scarce and only happen one or two day a week but i can end up having up to 10 or 12 attacks over those 2 or 3 day periods. When the Winter come i end up having that amount in a day and they then start to happen every day as it gets colder. I am praying that now i have help from the specialist and they are trying different medication i should hopefully be able to avoid the nasty attacks during the winter but we won’t know until it comes.

All i can do for now is pray that no more attacks happen today and as this weather passes i start to feel better and get less attacks. I will have to push the specialist for more help as these attacks are some of the strongest i have had in a while. I think the beast is trying to remind me that he’s still there and want’s to be in control but no matter what happens i will not let it control my life, I have to find a solution and i will fight the beats with every breath and bit of energy i have left in my body.

Woken by the beast 3 times ………I can’t cope

Yet Again i have been woken up at 3 am this morning by the beast with another massive attack. I honestly thought my head was about to explode it was that strong and the pain i get in the neck and a feeling like i have a ball or something stuck in the joint of the neck is an experience i would rather go with out. Every time i move my head it feels like the bones are grinding together and causes sharp shooting pains to run up and down the spine. The eye has swollen shut once again and the sweat is pouring off me like there is a leak in my water works.

Not to be content with just one attack the beast decided this morning it would wake me with 3 large attacks one after the other. About 20 minuets after the first one had finished and i was recovering my strength when i could all of a sudden feel another one building. The trouble when they are so close together like this is that i can’t take another injection so soon after taking the first one so i end up having to ride the full attack out only with the aid of oxygen. Don’t get me wrong the oxygen does help to reduce the length of the attack and can sometimes help stop the attack building if you use it when you have the strong shadows. When you are woken straight away with an attack it doesn’t give you a chance to take any precautions so you have to deal with the attack head on (excuse the pun).

3 big attacks, one after the other, has completely drained my energy and now i feel like i have been in a boxing match for the last 3 days with no rest. I am now left with a sore head, on the left side, with the scar swollen up like a lump and an extremely sore neck. I keep getting shooting pains down the spine again and pain in the back. These always seem to happen after big attacks and i have come to know them as the side effects of the attacks. When i try and walk its like lifting lead weights as my legs seem to have become more heavier also i get pain in the lower back with each step i take and the ache and pain seems to spread into the butt cheeks. No matter how much i try i can’t seem to get rid of these side effects after an attack and have to wait until they ease away on their own witch normally takes a couple of hours.

There has been a huge change in the weather so i am wondering if it is that that has caused me so much trouble and pain. We were enjoying a nice heat wave and a hot summer and are still enjoying the heat but it now seems to be on the change. Yesterday around 3 or 4 am we had torrential rain and a storm like no other with loads of thunder and lightning. This seems to be the reason for my attacks and with more of the same forecast over the next couple of weeks i am sure i am going to have a lot more attacks before this cycle is over. I have started to notice that after something has set off the attacks and caused them to start then i have to let them run their course. It seems like each attacks is stronger than the last and they have to reach a peak.

Once this peak is hit then the attacks stop and i end up having a couple of days pain free and no attacks. This must be what they mean when they say some people suffer with attack cycles rather than on a daily basis. I am hoping this is the case and that the medication i am on is starting to change the way the attacks work and hopefully with the help of other medication that the specialist will recommend i should be able to put the beast to sleep and stop the attacks once and for all. I will have to chase up my appointment with the specialist as it is now over due and i really need to see him to get some extra help in order to cope with  the pain all the time because at the moment i am just no coping. It would also be nice to try and find out why my back is hurting so much and why it is effecting my walking and movement. It seems the longer i leave it and the longer it takes to get seen by a specialist for the back the worst it is getting.

Well as you can see i have decided to change the design of my blog and make it a bit more easier on the eyes. It was giving me a headache looking at the bright colours all the time so god knows what it was doing to others. I have decided to keep this daily blog and incorporate it into my other web sites and link them all together so it is easier for people to find the information they are looking for. I will be continuing my daily blog as well as doing a monthly update blog also that just covers the key points and what is going on with my treatment.

I enjoy doing the web sites as it is the only release i have and keeps me from climbing the walls and going nuts from being shut away all the time. With the attacks still coming when they feel like it and are usually big attacks it makes life very difficult if i want to go out any where. Thankfully being connected to the internet helps me keep busy and keeps my mind active so i don’t just dwell on my situation and end up making myself depressed and ill. I am able to stay connected to family and friends in order to get the support i need , when i need it. There are days where i can’t even face going online but these day i tend to sleep away and stay locked in my room. I know its not healthy but i don’t really have any other options.

There is one thing that does seem to work and keep me calm and also helps to keep the attacks away. Its very strange how this happens and maybe its because it keeps my mind busy and i don’t think about my attacks. Fishing seems to be a miracle cure and for some strange reason, no matter how bad my head is, if i am busy fishing the attacks seem to stay away. Don’t get me wrong they don’t completely disappear and i have had a couple of nasty attacks whilst fishing but am able to disappear under my umbrella or into my bivvi, take my injection and when the pain is gone return to fishing. It seems to me that by keeping my mind busy and concentrating on fishing it helps to keep the attacks from building most of the time. However i do end up paying for it in the evening or the next day as the attacks seem to always return stronger after i have had a days fishing.

Pain free for 5 minuets but will it last …

I managed to get through yesterday with out having to cope with too many more visits from the beast and its attacks. Its starting to look like my flare up was due to the weather changing so dramatically over the last few days from the scorching heat wave back to the normal weather for this time of year including rainy weather. I knew the heat wave wouldn’t last long, they never do in reality, but at least we have had some nice weather this summer and there is still plenty more to come. At least it has now dropped back down to the lower 20’s again instead of being up in the 30’s and just too hot and uncomfortable to be doing anything.

Well this morning i was woken again at 4 am by the pressure on the side of the head and the strong shadow feeling i get when i know attacks are building in the background. At least i haven’t been woke by a full on attack again and managed to drop off back to sleep for a little while. I eventually rose at 7.30 am so managed to steal the extra 3 hours rest witch will make all the difference today and i won’t feel so drained of energy all the time. My neck has been giving me right trouble this morning and each time i move it in an extreme way (like twisting one direction to the other) it starts to click and crack. It sounds like i have grit trapped in the joints and feels like it too.

Although my neck is giving me gip and sounds like i have a grind stone stuck inside the joints at least the back is behaving itself today for a change. Normally when i get the grinding in the neck it is accompanied by sharp shooting pains up and down the spine causing me difficulty in movement and pains when i do move or stretch. It makes a nice change that the back is actually pain free for five minuets. I am just hoping that is continues this way. If the neck would just step into line also i would be happy as Larry (who ever Larry is? what a strange expression).

I can’t believe July is already almost at an end and we only have just over a week left of this month. I started the month with a fishing trip and then when ever i tried planning another trip something would happen or i just wouldn’t be able to go due to pain in the head or back. Due to this i have decided to get in as much fishing during August and September as i can as it is towards the end of the year and the change in weather will be on us once again. As soon as the cold weather draws in is when things become very difficult for me as the cold is one of the main triggers to my condition and i can end up having loads of attacks in a single day all down to the fact that its cold.

My appointment is due to see the specialist yet i haven’t received any notice in the post or any phone calls of the specialists secretary asking me to book in for an appointment. If i don’t get anything by the end of the month i will have to start to chase them up as i need to find something else other than the Verapamil that will help me to cope with the beast when he shows his face and the attacks begin again.

Talk about spending a whole day in Hell…..

I didn't have a wake up call from the beast this morning like i was expecting instead i just feel a little unreal after yesterday, what i can only describe as a day in hell. It started with a normal early morning wake up call from the beast at around 3.30 am in the morning witch i actually rode out the pain rather than take any of my injections as it didn’t feel as big as they normally do. I think this could have been the mistake that triggered my day in hell as afterwards the start of my day began.

It was on the 3rd attack of the day that i decided to take my injection as to abort the attack. The first one i rode out and the second attack was only a small one that effected mainly my eye and neck but the 3rd was feeling like it was going to be a massive attack so i took my injection as soon as i could feel the pressure build on the left side of my head. It took a while for the injection to start working as i had already gone into the attack by the time it started to work to block the pain. My eye had swollen and the sweat was pouring from me like someone had turned on a tap. It was around 10 minuets into the attack that the injection started to work and i felt my chest tighten and my breathing became shallow and the pain stopped. I felt a little sickly and it always takes my breath away but the injection works to stop the attack dead in its tracks.

There has been a few times where the attacks have actually over powered the injections but i was lucky yesterday as they seemed to do the trick but unfortunately i am only allowed 2 injections in 24 hours as they are so strong and very dangerous if you over use them. After the attack had eased it left me with the usual side effects such as a sore neck, a feeling like i have a golf ball stuck in the joint of my neck. A feeling of pressure constantly on the left side of the head reaching from behind the eye over the top of the head into the neck. Also a tenderness of the area so if anything touches that side of the face it feels a lot more tender than any other part of the body. The attacks then returned around an hour after the last bad one.

Again it was a massive attack so i had a choice to use the injection or leave and wait for later in the day just in case and i am glad i did wait for later on even though it was a massive attack that i had to ride for over an hour even with the help of oxygen. Usually the oxygen helps to half the length of attack but this time it was having none of it and i had to ride it out for the full length of time. I wanted to smash my head open just to try and get to what was causing these attacks to appear. Again i ended up with the side effects of the attack such as loud ringing in my ears and soreness in the neck. Even my back would hurt in the lower areas as pains would shoot down my spine when i would get up to walk about.

This was setting out to be a very painful day and by the 6th attack at around lunch time i knew i was in trouble and these attacks were set in for the day. I had to stay in complete darkness with no sounds at all otherwise the head would start to hurt again. It had become so tender that even someone knocking on the neighbours front door set off an attack due to the noise irritating the head. These attacks continued into the evening with around half an hour to an hour in-between attacks. I stopped counting them after 20 as i just knew i was going to keep on having attack after attack. I had taken both of my injections by tea time and even with the help of oxygen i was still struggling with the attacks when they came. All i could do was pray to god for the attacks to stop or some miracle to happen.

I honestly thought i was going to die they were so bad. Over 20 attacks in a single day and it felt like they would never stop. At some point in the early hours my eyes closed for the last time and i must have fallen asleep as i suddenly woke to the bite of the beast at 7am this morning with yet another massive attack. Even though it was a big attack causing my eye to swell and face to droop i can honestly say it wasn’t anywhere near as painful as they where yesterday and i didn’t even need to take my injection to ride it out. It lasted around 35 minuets and it was over. I am praying its the last i will get today and hope it starts settling again. I know we have been having some very hot weather the last couple of weeks and that the temperature suddenly dropped yesterday so i am wondering if it was that, that triggered my bout of attacks.

Wishing for Pain Free Days ……

After my scare yesterday i didn't get any more attacks as i decided to have an early night due to being so exhausted after the big attack. I have woken this morning with some strong shadows but the neck is no longer sore and the back is behaving itself so far. I am praying that the heat doesn’t set any attacks off today as i don’t want to go through that experience again. Even though i have had plenty of rest and managed to sleep through till 8am this morning , witch is amazing for me as i am normally woken by shadows or the beast at aroun4 or 5 am, i still feel weak. It’s as if all my strength has been zapped away and i am struggling to do small physical jobs such as hoovering the floor or standing washing dishes at the sink.  My legs shake under strain and my muscles are aching like nothing i have ever experienced.

I think it just a side effect of the attacks and that as the day goes on my strength will slowly return. I have been like this a couple of times before after the attacks but its normally during the winter months when i get around 6 or 8 bad attacks in 24 hours. This takes a lot of energy to cope with and drains you by the end of it. Too feel this way the morning after just one big attack is rare. Mind you the attack was one of the biggest i have every experienced so far with this illness and i am sure i will experience more before its over and i eventually get a solution to the beast and a way of keeping it asleep so the attacks don’t appear.

When i was last at the specialists office in the hospital we spoke about the medications and what different things we could try to stop the attacks. the Pregabilin worked and the Oxygen helped but the Verapamil made me very ill and resulted with me having to be rushed into hospital due to an impacted bowl and hernia. He told me there are other medications we will be able to try so if something doesn’t work not to panic as we will try something else and eventually will find something that works for me. i just wish i could see him a bit more than just once every 3 months. I so want to get this condition under control as at the moment i am just a slave as it dictates when and where i can go out. With the attacks still appearing when they feel like it out of the blue i tend to shut myself away during these periods and when i do get good days i go fishing to take my mind of everything that is going on.

At the moment we are experiencing a heat wave and one of the hottest summers we have had in quite a while and instead of being out and enjoying the weather i am stuck indoors pulling my hair out and climbing the walls. I do get some stress relief by using the computer and of course by typing my blog but this is only for a short time as i tend to start to get pains in the back and the neck if i am sat at the desk for too long staring at the screen for hours. Even if there were things for me to do and places for me to go i still wouldn’t be able to as the attacks can come at any time with out warning and it doesn’t mater even if i am taking all precautions they still seem to appear. I don’t like people seeing me in this way especially when it’s a big attack.

Most that see them tend to panic but those that do know also seem to suddenly change as they watch me in pain rubbing my head vigorously just trying to control the pain level. They watch my face drop and the constant “are you ok?” questions just bounce around your head and annoy you. You don’t mean to be rude or nasty or even ungrateful as you know inside they only mean well and its what you would do if you saw someone in pain, of course you would see if they are ok and if there is something you can do to help. Unfortunately, when you are getting pain levels that are almost rendering you unconscious, you tend to snap at them even if they are family and the ones you love. This is one of the worst conditions i have ever known and because its so rare and there is no actual cure i would class it up there with what i call the “black illnesses” such as Aid’s, Cancer and Strokes.

On a brighter note, thinking about cancer, my mother has now had her operation and the kidney that was infected with cancer has been removed so she no longer has the cancer in her body/ This is great news however she is having a bit of a problem with the kidney that she has left as it seems to be in shock and is being lazy. It does take time for the body to adjust and the kidney to start to do all the work but for some reason its being too lazy and her kidney function is dangerously low. They are watching her like a hawk at the moment, she said, and will decide what to do after her next set of tests to see if there is any improvement. She could end up having to have dialysis if the kidney doesn’t buck up its ideas any time soon. I personally think it will pick up and she won’t have to have such drastic treatment, the trouble is she doesn’t rest as much as she should do and amazes me just how much strength she does have.

Well  I have had a good moan and am thinking about ways i can stop the attacks from building. Its crazy as if its not the extreme cold setting them off it’s now the extreme heat and bright light that does it. I have to admit i don’t get anywhere near the number of attacks at the moment compared with what i normally get in the winter. I have to be grateful for the small improvements at the moment. It amazes me that it’s taken over 10 years to diagnose the condition and for them to become daily instead of every couple of months. I have seen so many different doctors, i have been told i am crazy and its in my imagination and was just confusing migraines with normal pain, I was told i was crazy and schizophrenic, I was told it was a blood clot from the crack in the head i had years ago, I was told it was the nerves in my teeth and had to have them all pulled out in a nightmare operation.

Then finally , when the attacks became a daily feature, i actually had attacks in front of the doctors and sceptics and they actually sore what was happening. It was a “locum” doctor that helped me out with the first referral to neurology and to finally meet Dr. Pickersgill who saw exactly what was happening to me and was if he was inside my head. He described my pain to me as if it was his own and exactly what i do to cope with it. He was the only doctor that actually knew what was happening and diagnosed it within 10 minuets of meeting with him. The day he actually diagnosed my condition was a very emotional one. At first i just listened to what he was telling me and then became very quiet on the journey home with my mother and step-father.

When i was at home, it was a couple of hours after, i suddenly just broke down and burst into tears. I couldn’t believe this was happening to me. In one way i was relieved to know i wasn’t loosing my mind and it was a real illness but at the same time i was devastated just knowing i had an incurable illness that could get worst or better depending on the medication. Also the fact i would be on strong medication for the rest of my life in order to control the attacks, stop them happening, and help me to live a normal life. It was bad enough that my bi-polar disorder was playing up and the depression side of it was causing me havoc.

Its hard to explain, the only way i can think off is…. if you were making yourself breakfast and instead of pouring the milk on the serial you miss and get it overt the table… a “normal” person would excuse themselves and wipe it up but when you have bi-polar… you breakdown into tears and run away from it as you can’t cope with what happened even to the extreme that if someone tries to talk to you about it you lash out or hide away so you don’t have to explain yourself. This is the only way i can think of describing what happens to me when the bi-polar kicks in. It could be spilt milk as i explained or a form you have to fill out, you suddenly become overwhelmed by emotions and you crack up there and then. I have only been getting bad from the bi-polar disorder for the last 15 years i would recon. I used to suffer mild bouts of it but was able to cope with them or my mother and/or wife (at the time i was married) would help me cope.

The last 15 years have been crazy and its not the depression that you have to worry about its the “high” periods. I become so unrealistic i can suddenly take on the world and do stupid things, blow my money and end up in real trouble if i don’t get help or someone spots it before i fly of the handle. The only person i know that can spot a high period was my mother. After so many years suffering i now have certain things that i do that warns me that its about to happen or is happening. The same with the depression side, i have certain tricks that i have learnt over the years that help me to recognise when i am down and that way i am able to cope at the time.

Well its another hot day and we have more and more sunny days forecast for the next couple of weeks so i have to try and get out and enjoy the sunshine while we have it but try not to over do it and cause me to have attacks. I will try and get out and do a bit of fishing maybe on the weekend if i can arrange it. I am just praying the best stays away and i get s few more pain free days before all this nice weather is over and gone.

The Beast’s Summer Attack….wow that was real pain!

WOW! What a head rush! I have just gone through an hour and fifteen minuets of pure agony like my eye was on fire and my brain was being scraped out with a spoon. My eye was watering so much it soaked my t-shirt. The pain was so severe all i could here was loud ringing in the ears and not even the sound of the TV was breaking through. Even taking my injection didn't really stop the attack from happening. When you only get smaller attacks for a while you can sometimes forget just how much pain these attacks can cause. I actually thought i was going to die as even my breathing was shallow everything seemed extremely strange all of a sudden.

This feeling only lasted for a second but when i was getting the pain and the feeling it seemed like a like time. The attack has built due to the hot weather we are getting and for some reason i keep over heating, breaking out in sweats and an attack starts to build but then stops. Each time it happened it was stronger and stronger until this last attack scared my half to death. I have had some attacks and even passed out when they are so strong but this was strange, a feeling i have never had before. Each time i get attacks they seemed to be getting stronger all the time and feel like they are building to an attack that i just wont be able to cope with. It is hard enough getting through the day with no pain and hoping an attack doesn’t appear. Worrying each time it happens, scared of the end results.

The sharp pain you get over the top of the head and into the eye. The pain then runs down behind the eye into the top of the jaw. Also from the eye it runs over the left side and into the neck at the back. It feels like the side of the head swells up and the neck suddenly develops a golf ball stuck in the joints. So painful that each time you move your neck you get shooting pains straight down the back of your spine. All you can do it massage your head in desperation and start smashing it against the floor or the sofa so you don’t actually break your head open. You scream and wriggle in agony and there is nothing anyone can do. The pain is so sever all you want to do is die and end the pain. It becomes so painful so quick, within seconds, and sometimes can take your breath away.

Suddenly it stops!! “BANG” nothing….The swelling remains for a while and the neck is very sore and tender but the sharp pain that feels like your brain is being ripped out suddenly stops. It comes as fast as it goes. I have actually watched my face in the mirror, when having an attack, and watched my left side face droop like i was having some kind of stroke. Watched my eye close up and sell as water poured from it and the face suddenly turn red on the left side. Even now the pain has gone there is still evidence of a problem as you look at the side of my face and the left side is still slightly dropped. I am still getting sharp pains up and down the spine and the neck still feels slightly swollen. I still have a feeling of pressure on the left side of the face and the eye still feels sore so i know i am in for more attacks tonight. They have just come out of nowhere and started due to the heat wave we are having. Even though i have tried to take it easy they have still appeared.

I am  praying i get an appointment with the specialist soon so i think i will ring and leave a massage with his secretary and see if i can get to see him soon for extra help. These attacks are becoming stronger and stronger and so strong that i can’t deal with them. It now scares me to think the heat will bring on such violent attacks. God help me when winter re appears and i have to suffer the cold once again. If the attacks are this strong now what will they e like by next winter. i need to get control of them as quick as i can as this attack today has scared me and opened my eyes.

No attacks but the Beast is still waking me!!

Again i was woken up this morning by strong shadows and a sore neck. No matter what i try as soon as i am awake i cannot get back to sleep. Even though the attacks are not appearing i am still getting a feeling of pressure on the left side of the head and the scar at the top of the head is swelling up so i could have an attack at any time. I am surprised it has played up so badly as the weather is lovely at the moment and looks like we are having a heat wave as it is set to increase through out the week right up until the weekend.

Myself and John decided to go fishing yesterday along the local river to what it is like. we decided to try the Tidal end and see if there is anything in there. Apart from one wild trout we didn’t see any sign of fish until we almost got the the sandy area. Then we started seeing little dab’s just in the bottom sand and silt. It was a shock to be honest as we thought there were a lot more fish than that and as we travelled along the river bank we were trying different swims and tactics to see if there was anything there but nothing seemed to want to feed so next time i will have to try the other direction for the fresher water fish.

My back was playing up all day long and i was grateful that we were stopping in different areas so that i could rest my back slightly before moving on. Again this morning it has been non stop and i keep getting sharp pains shooting up and down the spine. The back is really playing up and it is of course making my neck and head feel worst. Each time i get a shooting pain up the back into the neck it then aches for around 10 minuets and if it becomes too painful it will then start an attack building and once again i end up in agony or worst i get a full attack.

It’s mad how different parts of the body can cause you to get a headache or can cause you pain in the neck. I suppose its because all the nerves join at the base of the neck so one nerve that is damaged or slightly swollen will effect one of the others making it feel worst than it actually is. I have started to notice that the pains i am getting in my back are becoming stronger and i am suffering from a bad back a lot more than i used to so i think it is getting worst.

My appointment is Tomorrow with the doctor so i will have to point it out and see if she can push the referral to the back specialist. especially now its becoming awkward and uncomfortable and even laying still at night can still be uncomfortable and end up keeping you awake half of the night due to pain. I will also have to look into getting a better mattress for the bed as the one i got is a few years old now so i suppose it id due to be changed and any little help at the moment will be gratefully received so maybe a more comfortable mattress will mean less pain.

Still Attack free but the back’s been playing up…..

I am surprised i am still getting problems with my head with all this nice weather and heat wave we experiencing. I have found that the bright sun light shining directly into my eyes seems to bring on attacks and also if i get to hot and overheat myself i find that also brings on attacks. I never thought i would get attacks from the sun or the heat as usually it is what helps to keep the attacks away but i suppose too much of a good thing can sometimes be bad for you.

I was going to go fishing yesterday with one of the members of Fishing Adventures Wales, John Rees, but decided as my back was in a lot of pain to put it off till today. I am actually glad we did as yesterday i was very hot and if we would have been outside in the sun i am sure we would have burnt and ended up with  sun stroke. Today my back is a lot better so we are going to give the river a try and see what we can catch.

My head seems to behaving itself at the moment so i am looking forwards to a great days fishing on the Rumney River, our local river that is within walking distance from where i live. Its been years since i fished a river properly so this should be a fun day out and as long as the head keeps being good i should be able to enjoy a brilliant day fishing.

On a another note, i can’t seem to get over how fast my mum is recovering from her major operation and having a kidney removed, You would have thought she would have been laid up in bed for a while whilst the body adjusts itself. but not my mother, oh no! She is already out and about getting fresh air and enjoying the sun. She looks so much better after the operation and seems to have her natural glow back and is full of life. I wish i was as strong as her sometimes they just don’t make the like that anymore.

I know she has the wheelchair to help get around so she is not really doing anything excessive that would hurt her but you can’t help worrying and wishing she would rest until she is back to her self 100%. She feels a lot better and a lot of things like her blood pressure is returning to normal and her sugar levels also returning to normal so it is looking like this cancer on the kidney is what threw her body into confusion and caused a lot of the secondary problems. Now that its gone she is starting to get back to her old self.

Just think a few years ago they wouldn’t have been able to do such an operation so quickly and would have been months recovery in hospital etc. They have come so far with technology that all these major operations are now becoming every day practice and people seem to be recovering quicker. No matter how much we moan about having to wait for referrals and appointments you still can’t beat the NHS in the UK as we are the only country in the world with this system and give free treatment to any that need it.

Talking about referrals i am still waiting for the referral to the back specialist and try and get some answers for the pain all the time and all the problems i am getting when walking. It seems when it happens it is getting worst each time. the pains are getting stronger and it gets harder and harder to walk when it does happen. Thank god its not all the time or i don’t know how i would cope. At least i got my movement most of the time and am able to walk to the shop when needed but when the back gets bad i can’t even get to the bus stop let alone the shop at the top of the road. Can’t wait to find out what is causing it?

Pain free.. at least for now, let’s enjoy the sun…

I managed to get through the day yesterday with only one attack and it was only a small one due to constant bright light shining in my eyes. I have started to notice that bright lights and extreme heat are both triggers for my condition and will bring on attacks. It’s not fair if its not the cold that starts them off its now the extreme heat that starts them.So even though the weather is nice and the sun is shining, if i get to hot or stay in the sun too long then an attack will build and start, i can’t win.

.Again this morning i woke up early at 4.30am due to strong shadows but thankfully no attack appeared. I couldn’t get back to sleep no matter what i tried as the shadows were too strong so i just lay on the sofa trying to listen to calming music and try and kip but i just couldn’t doze off.  It gets really annoying some times waking up early all the time especially when you are still feeling really tired and just want to catch up on your sleep but you cant due to a stupid head playing up all the time.

Well it looks like this heat wave we are having is going to continue for another week yet at least. Whilst we have all this lovely sun i will try and get out as much as i can even if it is only for fishing as its the only thing i feel confidant in doing even when my head is playing up. Myself and John, one of the members of Fishing Adventures Wales, have decided to spend the weekend fishing the Rumney river and the different spots along the river to see what we can catch. This should be fun and as long as we try and stay in as much of the shade as possible and out of the direct sun i won;t be pestered by head attacks all the time.

I am assuming my appointment to see the specialist about my head will be arriving some time this month. If it doesn’t arrive by the end of next week i will have to ring his secretary and chase it up just in case as i really need to see him to let him know what has happened with the verapamil. At least then he will be able to tell me what other drug we can try to get these attacks to stop all together. I am really hoping there is something they will be able to do and also that the Pregabilin i am taking is what has reduced the attacks at the moment and not just the weather changing. If it is only the weather change then when i get to next winter and the cold weather returns i will end up in agony once again and get attacks every day, all day and i don’t think i could cope with that all over again.

The Beast and Burnt, what a combination…

Again i have been woken by the beast at 4am this morning and has left me with a very sore neck and back. I am not surprised really after yesterday as it was so hot when we went fishing its was crazy. I burnt my ankles and John, who came with me, had a sore neck . I only burnt them as i was wearing shorts and both of us ended up with sun stroke even though we had a Bivvi for cover to stay out of the sun. The temperature had to have been in the high 30’s by lunch time in the sun and almost the same in the shade.

I was shocked i didn’t get any attacks whilst fishing in such hot weather as extreme heat can sometimes trigger an attack but was very grateful they didn’t come. However towards the end i started to feel ill due to the heat stroke and the heat was throbbing. this started to build an attack but it just seemed to stop after a while and never appeared, again i was very grateful.

By the end of the day my back was killing me. Why it was playing up so bad i don’t know its not as if i was doing anything that took a lot of moving about or lifting things. Whilst carp fishing you are say in a comfortable chair most of the time waiting for the alarms to go off or tying up your next rig. Match fishing is a lot more active as it includes active fishing, this means that you are trying to get a bite per cast and quickly bring in a lot of different type and size fishing in a short period of time. This is the best type of fishing as you are busy non stop all day and the fish just keep on coming when you get the tactic just right.

I am really going to have to start pushing my referral to the back pain specialist as it is starting to become a bad problem and to coincide with my condition of CH being so bad it’s going to make life pretty miserable most of the time, as if its not bad enough now. At the moment i am grasping hold of my fishing with both hands as it is the only thing and sport i can do at the moment and is really the only exercise i am getting.

OK i do walk to and from the shop rather than jump on the bus just so i can get the exercise and keep movement in my back even though it is painful with each step. I enjoy the fresh air and try at every moment i can to get some but when you feel down all the time , due to bi-polar disorder, and don’t want to go out you only get little breaks. Also you fear getting attacks when out in the open and when they are bad or you are getting strong shadows you tend to shut yourself away to try and be alone in case the beast comes. So in reality you don’t actually get out as much as you should or would like and when you do its difficult as you have to make sure you are carrying all medications in case of an attack.

Life does become difficult at times and i suppose are there to test us and gives us strength as we learn to deal with each situation when it arises. It would just be nice to take a year out. A year with no pain, no stress, no problems and to be able to live normally with no illness to deal with or medication to take or chase. I would give the rest of my life just to spend that one year doing something you enjoy with out any problems. Everyone gets problems in life and i understand we all have to deal with some kind of stress but i don’t mind the normal things i just wish the pain would just stop for a while.

Up early with no pain, Ready for my fishing trip..

Well yet another early morning start to add to the diary not from an attacks thank god or from the shadows i normally get. Its down to me getting a nice and early night last night ready for fishing this morning as I am going fishing at one of our local lakes today. I am surprised i haven't been woken by the head as yesterday it was still playing up something rotten. I kept on getting some very strong shadows that i thought would lead to an attack but luckily it didn’t and i managed to stay attack free for most of the day.

I can’t wait to go fishing today! It’s been a couple of weeks since i was last out on the bank trying to catch fish so i have been having withdrawals from it. With all this lovely sun all week you would have thought i would have been out every day but as my mother was still in hospital i wanted to wait for her to have the operation and stat getting better before i did anything and thankfully she has pulled through ok and is now recovering from the ordeal

At last my mum is home from the hospital. None of us like being in hospital for any reason and my mum is no exception. Just laying there each day with nothing to do is so boring at times its unreal. OK i know that most are in pain and that's why they are there as they need to be watched but you can’t even watch TV with out having to pay a small fortune for it and a radio is out of the question as they only allow small portable ones with ear phones in as they say it could upset the other patients.

Well at least now she is home and the cancer is now gone. Mind you also one of her kidneys so the body now has to adjust to just having one in. They say you can live a normal life with one kidney in you just have to make sure of your diet and exercise and not over do things until the body has fully adjusted. So it looks like a couple of weeks rest for her. I can’t see that happening i give it maximum 2 weeks before she is nagging to go fishing, maybe even sooner.

Not long till its time to leave to go fishing, only a couple of hours so i suppose i best start to get ready as i have one of the team members joining me to give hand to get all the gear down by the lake side. Its crazy how much gear you accumulate when you take up fishing as a sport instead of a hobby. This is only due to strict rules on how you treat the fish that you capture and the gear you use it to catch it. Of course it is also the fishing companies bringing out new products and techniques so you end up having to purchase the latest tackle or fad that is hitting the water banks each year and it soon all adds up.

Pain Free and ready for fishing tomorrow!

WOW for the first time in a long time i actually managed to stay asleep and sleep through with out being woken by the beast from hell causing me agonising pain first thing in the morning. Now that i have actually slept rite through i don’t quite feel awake at the moment as i haven’t had any pain yet, it feels strange but nice ands i will just have to sit and enjoy it instead of wondering and wishing the worst to happen and end up causing myself an attack.

I am hoping this is just one of many more mornings with out pain to start the day to come. You probably think…. why is he so made up just to wake up with out pain or an attack? well in all honesty its been very rare i don’t have pain when i get up in the mornings it is either from attacks waking me first thing in the early hours or its due to strong shadows always being there, a feeling of pressure on the side of the head that is just as painful as a migraine but i become so used to them after 10 years of suffering the same problem that it just feels normal to me. Now that i am actually pain free for a change feels very strange indeed and even my back is behaving this morning i don’t have any shooting pains travelling up and down like i normally have.

For the first time in a long while i am actually lost for words and don’t know what to do with myself. Being pain free for me is such a novelty lately i am actually excited. it could also be the fact that i am off fishing tomorrow morning that i am all excited and can’t wait to be at the lake side trying to catch myself a monster fish. I think i will spend the day pottering around the flat doing all the little jobs i need to be done and get then done whilst i feel well enough to do them and not keep putting it off all the time. So that sounds like a plan!

My fishing web site seems to be taking off like a storm lately and i have even had a couple of local lads join the fishing club who will now be going on regular fishing trips with myself and the rest of Fishing Adventures Wales. I first started the site as it was just a blog like this one all about my hobby and the love i have for the sport. With all the support i have got from companies like Total Outdoors sending me free and discounted tackle, saving me a fortune, and other companies also showing their support my web site including Facebook pages have become very popular and is no longer just about me and my families fishing trips but about a group of people who all enjoy the same sport, fishing. I have also started a private fishing club off the back of the site in order to arrange trips and outings for everyone to join in with and coma along on or fishing venues.

Its crazy how sites like these blog sites become so popular and suddenly become viral over night. Especially a site like this where i share my feelings and thoughts as each day passes and the attacks continue. Share my experience with others to educate and empower others with the same knowledge so if they are suffering something similar then just maybe they will find something in my blogs that will help them to cope with the problems they are going through. If it just helps one person to realise this condition exists and helps them to deal with the condition then its all worth it. That’s how i see it anyway!

Woken by the beast from pain in the back.. strange!

I wasn’t woken just by one visit from the beast this morning but by 2 different attacks all within 20 minuets if each other and all were big attacks that i had to ride out until the next one started. It felt like as one was finishing the next attack was building. Why it has suddenly become so bad i don’t know. I am sure my back has something to do with it and i think it could be also helping to set off the attacks. The pain i have been getting in my back and up my spine has been getting worst over the last few weeks but i wasn’t expecting what happened this morning. All through the night i have been tossing and turning as i just couldn’t get comfortable due to aches and pains in the back all the time. Each time i moved in bed i would get shooting pains down the spin into the bottom of my back and then i would wake suddenly.

It could be something to do with the nerves i suppose as i can feel something pulling down my back that also effects the base of the neck and when it pulls it send a sharp pain into the neck and that in turn has set of the bigger attacks and caused the beast to show its face. It’s starting to look like i have a big problem with something in my back so i am going to ring the doctors today and book another appointment and see what the doc say about it. All i know is i can’t go on like this, problems with my back causing me even more problems with my neck and head. Its bad enough having to put up with attacks now and again each day but to have to suffer with the back all night and then to be woken by the beast on top of it is just too much. Lack of sleep is making me feel very lethargic and the tenderness of my head makes every sound louder than it actually is making my head very sensitive to noise and light.

On a better note, my mother has finally had the operation to remove a kidney due to cancer and is now in recovery. She has been in recovery for 5 days due to the other kidney being lazy and not taking up the work of the missing one so they will keep her in until her kidney function is normal. My thoughts and prayers have been with her every night as i know what it is like being stuck in hospital and its not the best experience anyone should have to go through. I know it won’t b long before she is back to her normal self and will be fishing with us again. She will have to rest for a couple of weeks after coming out of hospital but i know what she is like and it will be like trying to make hyperactive cat stay still. She hates to be limited so i know it won’t be long before she is planning our next fishing trip as a group.

With all this lovely weather at the moment and the heat wave we are getting in Cardiff you would think that my attacks would be behaving themselves and not causing me problems but for some reason the last 2 weeks have been non stop again. Almost every day i am having to contend with one type of pain or attack. My back has also been just as bad so it could be that the pain i am getting in the back is also aggravating something connected to my neck or head and bringing on the attacks. Well i am just hoping they will improve soon and they start to reduce in the number of attacks once again. I can’t wait until my next appointment with the specialist to let him know what has been going on and see if he can shed some light on why my back is getting just as bad as the head.

Well with all the nice weather it’s fishing time again. I have been putting it off due to my mother being in hospital and all the worry and stress of it all. Now she is over the worst and getting better, even though its slower than we hoped, i will now go fishing again and have planned a trip down to one of the local lakes with 2 of the new members of Fishing Adventures Wales. We will go out Wednesday as there is going to be a bit of cloud cover witch will help the fish with their feeding as when it is too hot they don’t seem to feed as well as  when it is cooler. I can’t wait for the fishing trip to be honest as i have just finally purchased the rest of my fishing tackle and now have “everything” i will need. Boys and their toys!

Fingers crossed and lets hope that these attacks will start to die down also and allow me the freedom to do the jobs i have to put off because of the attacks. Its getting to the stage that even doing the house work is becoming difficult due to the back. neck and head all the time causing be agony. I am now even starting to think about getting myself a powered bike just to get around on and do my shopping with. I will even go for one of those little electric shopping carts or bike you can get for shopping in and around town. I can’t remember when the last time i went shopping in town was? its been that long ago! Its the only way i will ever get to go shopping in town again as at the moment i am just too scared of having a big attack in the middle of town. I don’t mind a smaller attack that i can abort with the injections but you can’t pick and choose the level of attacks you get. If i end up with a big attack that over powers my injection i will be in deep trouble being stuck in the middle of town screaming in agony and smashing your head against the ground or wall depending if you are still standing when the attack happens. I don’t think shoppers around you or even the police will understand what is happening until you are in such a state you are able to explain it to them. It also gets annoying having to explain your illness time and time again to different individuals who are just too lazy to read your records, no names or services mentioned even though i would love to slate them off at the moment i won’t!

That’s all for my blog today as it’s time to get back to the grindstone and start my house work. Finally the head has stopped aching from the last attack that finished at around 6.30 today so its been nearly 2 hours of aches and pains to deal with since it started. I have to also get my fishing gear ready for Wednesday so its going to be a busy day today. Lets just hope the beast stays asleep and i am able to enjoy the weather instead of being shut away all the time waiting for the next attack.

The back’s getting as bad as the head just lately…

Although the weather has turned really nice lately and it looks like we are in for a heat wave over the next couple of weeks i have continued to get attacks during the day and also strong shadows including the early morning attacks. This morning and yesterday i wasn’t actually woken by an attack but by the shadow on the head again. The feeling of pressure on the left side of the head, the swelling on the scar and the aches and pains in the neck are all signs that i will have a big attack later in the day and no matter what i try and do to avoid the attack or triggers its still seems to happen.

I am grateful that the attacks have reduced in the amount i seem to get within a 24 hour period but it could also be the improvement of the weather also reducing the attacks. I am praying its the medication i am on and that the Pregabilin tablets actually work. The trouble i have is they always improve as the weather improves so during summer i get the least amount of attacks and during winter i get so many i wish i was dead. I am hoping this is not what is happening again with the medication i am on and hope i will see an improvement or to actually stop them before the next winter comes. I know its a lot to ask for as i have been suffering like this for 10 years so to get them to stop over night is a tall order. With an introduction of another medication the next time i see the specialist, you never know, any thing is possible.

I am really praying that i don’t have the same experience with a new medication as i did with the Verapamil. It was weird the way it reacted with me due to be an allergic reaction or just reacting with another medication it put me through hell. My stomach has never been the same and i now suffer from IBS because of what happened. I still have the hernia in the groin on the right side so ever know and again it feels like i have been kicked in the family jewels.

My back is still giving me big problems and i wish they would hurry up with the referral to the specialist. Every day it is getting harder and harder just to walk to the shop or the chemist. It seems i tend to be biting my lip in pain a lot more often when walking places just recently and am surprised just how much pain you can get in you lower back area. It seems like every muscle and bone in the lower back is on fire and spreads into your bum cheeks. Even when you stop and rest for a while and start to walk again after everything seems to suddenly feel stiff and lock up and takes you ages to get back into your walking rhythm again. It doesn’t matter what pain killers or anti inflammatories i take nothing seems to help as its never constant some days are better than others and i still get the odd day where i get no pain at all but they are becoming rare just lately.

Lets hope the beast can be stopped once and for all…

Yet again another early morning start but this time i wasn’t woken by an attack but by the shadows instead. I have a really strong feeling of pressure on the left side of the head behind the eye and over the top leading into the back of the head at the top of the neck. I haven’t had an attack yet but i know when i get these shadows i am sure to get one some time today. No matter how much i try i just can’t seem to get to sleep.

My mother is due into hospital today so that is also playing on my mind. The hospital has taken every precaution possible to make sure her operation goes well and according to plans. They are going to remove one of her kidneys as it is infected with cancer and then she will have to rest and recover from the operation. The body can run on one kidney with no problems apart from having to watch your diet and they have made sure that she will be as comfortable as possible but i just can’t help worrying.

I suppose its just a natural feeling as she is my mother and, god help me, i don’t want anything bad to happen to her. Its bad enough she has to go through this operation. I have tried to help as much as i can and keep her mind off the operation. We have been going fishing almost every other day last week just to help her relax and enjoy the sun. I know she has been preparing herself mentally for the last few months so it shouldn’t be such a shock to the system when she has the operation. We will just have to make sure she is able to rest as much as she needs to when she comes out of hospital and make sure her house is clean and no stress to upset her.

This has probably contributed to my sleep being so erratic as even though i know everything will be OK and they have taken every step to make sure she is comfortable and in the best hands i will still probably be worrying in the back of my mind, as i know i am. It’s crazy how different things effect the body. Stress, worry and also weather are 3 of the top main triggers for my condition and always seem to set off attacks. I am also beginning to think that lack of sleep and tiredness can also aggravate the condition and eventually set of attacks also.

Talking about weather we have been having a really mixed bag of it just lately. One day sun the next rain and then sun again. Its one of the strangest summers we have had but at least its warmer than the last 2 years as we didn't really have a summer period. This year is way better and the weather has been a lot nicer so i have had a lot less attacks compared to the last couple of years. The medication i am taking , Pregabilin, is also having an effect on me and seems to have reduced the number of attack i get but still hasn’t stopped the beast from appearing so i am hoping on my next visit to the specialist he will find a medication that i can take that will help put a stop to the beast once and for all.

Its such a shame that the Verapamil tablets just don’t seem to agree with me and i am either allergic to one of its ingredients or it is conflicting with one of the other medications i take. Its so upsetting that this happened as after the second week on the tablet it actually stopped the attacks from building and i was pain free for a while but as soon as i stopped taking them and my stomach returned to normal, after swelling up like a balloon, the attacks returned and i was back to the same old routine.