Time to ignore the beast and get on with fishing…..

Another day to notch up pain free. I managed to get through yesterday with out any problems and no sign of attacks appearing. I even went out in the cold and normally i would get signs of pressure building or aches and pains as the cold air hits the face but i didn’t this time. Before i get to excited i do have some shadow this morning. A slight feeling of pressure on the left hand side of the head and the neck feels a little sore, The back has been good for the last couple of days so i am hoping that will also start to improve as the weather does. I am sure it is the cold that is getting to my back and causes me to get the shooting pains all the time. Maybe they are right about the arthritis of the back and that's why the cold weather causes me so many problems.

I am just hoping these pain free days start to last as this is now the 4th day i have gone with out a major attack happening. I have had a couple build up on me and times where i thought i was about to get a nasty one but they have just eased away or disappeared just as fast as they came. These are the times that convinces me that the medication is working to stop the attacks from happening. the temperature dropped again last weekend and the start of this week so i thought i was going to have a load more attacks again but i was wrong. I managed to get through with no problems and only a couple of attacks but this last week has been good and the attacks have stayed away. Now the temperature is set to slowly increase as we get into the start of spring.

Its almost time to renew my fishing licence and get ready for my fishing adventures. I have been so looking forwards to going fishing and visiting the different venues around Wales. I am also booked to go on holiday with my mother and step farther to Cornwall for a weeks fishing at one of Cornwall's premier fishing spots, White Acres, a complex of 10 course lakes and 2 specimen lakes. So you can imagine i am going to have the time of my life, a weeks fishing at the start of Spring! I am then going to go on holiday with my brother later in the year at another fishing destination somewhere in the UK. i am leaving the details up to him and where he decides he wants to go as long a there’s good fishing i don’t care.

I have been spending a lot of my spare time re decorating and designing my web sites that will document my journeys and adventures as i fish these different venues. I will also be launching “fishingadventureswales.com” next month as this is the main site that leads to the blog and forum.At the moment it is hosted on a free server “fishingadventureswales.weebly.com” I could leave it on this server and it wouldn’t cost me a penny to host the site but i think having my own domain would be better especially now i have companies involved in the site. I am also now an official product tester for “Total Outdoors”, an online fishing store. I will get the chance to test new products before they get released on the market. I also get huge discounts on any goods i need for my fishing adventures so it saves me a fortune and already has saved a massive amount as they sent me samples of bait and tackle to start me off.

Its all starting to fall into place and my quality of life is beginning to improve slightly. I still have a long way to go before i become well again and i also know i will have this condition for the rest of my life and have to learn to control it with the medication. I also know if i stop taking all these strong medications i will end up back in pain and the attacks will return. I have to find the happy medium in which i can control the beast and still live a relatively normal life all be it as a disabled person. I think its about time i accepted that there is nothing i can do accept follow the specialists instructions to control the beast and get on with my fishing.

Still pain free during the day but for how long?

Its actually nice to be able to lay in bed till 8am in the morning and not be rudely awoken by the beast in the early hours. Its not until you have an illness like mine that you actually appreciate the time spent when you are not in pain. It’s like it takes over your life. All you can think about and talk about is your condition and the attacks you get. Constantly battling with pains in the neck and back and hoping that the big attacks don’t develop. Always scared to go out into the cold weather due to fear of the beast returning and you ending up with non stop attacks all day long. I am sure the new medication has had something to do with the sudden decrease in the amount of attacks i am getting. Even with the Pregabilin and Oxygen i was still getting between 2 and 4 nasty attacks in a day. Now all of a sudden i am looking at between 4 and 6 a week. Its a huge difference in my condition and the attacks seem only to appear when the weather is at its coldest or i do something stupid like carry too much weight in the one hand and strain my shoulder. I don’t seem to be getting the smaller attacks any more and only the big ones start when in extreme conditions.

If this continues it is starting to look like i will finally get my life back and get this beast under control. It will make a change for me being in the driving seat rather than the attacks dictating what i do all the time. I have had a bit of an attack this morning due to the fact that i let the gas run out with out turning the emergency on so when i woke up the flat was freezing cold. Normally if the flat drops in temperature i would be up at 2 or 3 am in absolute agony and would get attack after attack. I was lucky as i managed to stay in bed and didn't get any sign of an attack until i woke up and came into the living room. Then the beast was beaten back by the injections and the oxygen. I could be completely wrong and it could just be down to the time of year again and due to the fact that the weather is now slowly improving as we go into Spring and Summer. It seams i go through the same cycle every year. It starts of extremely painful with attacks constantly bombarding me through the cold days and the winter weather and then as it warms up the attacks become less and less only to start all over again when autumn comes. I am rally hoping that this time i am wrong and it is the medication that is helping.

Its so hard to tell as these attacks are so unpredictable and they always seem to have a mind of their own. Well fingers crossed that this is the start of good year for me and i will now become in control of my condition. I have to arrange an appointment with the ECG department to get some ECG readings done on a weekly basis so they can increase my medication as they won’t until i have had the ECG reading done. They are doing this as the Verapamil is normally used for heart attack patients but also seems to work with CH sufferers as well. the only trouble is i have to travel miles in order to get the ECG scans done. I don’t understand why they can’t use a scanner that is closer to me but even when my mother rang the specialist and informed him what was happening he seemed to become very angry as to why the doctor couldn’t arrange one closer to home. he has stated that if i need an ambulance to get there then i just have to tell them as a bus journey, on two busses for over an hour and half might end up in a painful attack as it normally does.

Pain Free…… well sort off!

Well at least i am not being woken up by the beast and big attacks first thing in the morning any more. The temperature seems to have warmed up and it isn’t as cold as it used to be. This morning i manage to have a nice lay in till around 7.30 am but had to get up as the abscess in my mouth was killing me. I managed to burst the abscess yesterday releasing the pressure so it didn’t cause me any more agonising pain and started a course of antibiotics. I think i did well to go into the dentist yesterday and actually book an appointment to have the teeth taken out. unfortunately the dentist is so busy they couldn’t give me an emergency appointment and said the only was to get emergency treatment because i had the nasty abscess was to ring the hospital dentist and explain that i don’t have a dentist yet even though i have registered with this other dentist, the registration will not start until i get seen on the first appointment.

The problem with going to the hospital is it was them that butchered my mouth in the first place, It was the hospital dentist that ripped out all my teeth, apart from 3, because they though that was the cause of my condition and it wasn’t until after they had done the operation and i went through hell that they found out it wasn’t the teeth that was the cause of my attacks. By that time it was too late. So there was no way on earth i was going to go to the hospital to get the abscess seen to. The pain i am getting from the abscess and tooth is only 1% of the pain that i get when i have one of my attacks so i can put up with it no problem. even to the point that i burst the abscess myself and cleaned out as much of the poison as i could. The pain i was getting was nothing compared to what i normally get so found it easy to do what was needed to ease the pain.

It is actually nice to be talking about something other than the attacks i keep on getting and nice to see that they are easing off as the warmer weather approaches. I am hoping it is also the medication that has put them to sleep and hope that this pain free period (ignoring the tooth pain) will continue. If it s the new medication that has helped to stop them from building then i might not have to increase to such a high dosage of the medication like the specialist thought. but i will have to wait and see as it is possible that the attacks could come back at any time. I still get the shadow if i go outside into the cold air and the wind starts to blow against the face. It starts to build as if an attack is about to start and then suddenly stop and disappear again. I am praying it is the medication doing this and is now causing a block to stop the attacks from becoming such a nightmare again.

With the nicer weather approaching its time to start my tour of the lakes and rivers of Wales. I have been spending my spare time redesigning the web site and blog so it looks a lot more professional and easier to follow our journeys. Its only about 8 weeks until we go on our fishing holiday at White Acres in Cornwall and i can’t wait. I am going to try and get in as much fishing and practice as i can before the event so this weekend coming i am off out fishing again as long as the weather allows me to.

The beast brought a friend!

Sunday morning i was woken by the beast around 4am but this time the beast was not alone. I also woke with one cheek looking like i had golf ball stuck in it. I had woken with an abscess, one of my teeth had decided to give me an infection and what a painful wake up call it was too. The head was going, the cheek was hurting and the tooth was aching and feeling like it was going to explode from pressure. I basically punched myself in the cheek where there was so much pain and was lucky i suppose as the abscess burst through at the base of the tooth and released the pressure. The pain started to ease in the cheek and only the tooth was aching so i had to use some Anbesol antiseptic to ease the tooth. The injection took care of the head.

I was lucky for the rest of the day Sunday and didn’t really get any more attacks from the beast and my back was also behaving itself. I had decided to go to my mums for dinner so was getting out of the flat for a bit. It was on the way home when the back started to hurt again. I am not sure what is setting the back off. Is it a nerve that is trapped or the same problem as my head  i just don’t know. I will have to wait until i see the back pain specialist before i get answers to that. I was again woken this morning but it wasn’t the beast this time it was the tooth and abscess again. The pressure has built up again and the tooth throbbing like crazy. Thank god i can go to the dentist late this morning as will have to get antibiotics for the infection.

It’s been years since i was last in a dentist and due to the hospital putting me through hell and ripping out all but three teeth as they thought the attacks i was getting was caused by the nerves in the teeth but as they found out later it had nothing to do with it. They also suspected it was actually in my jaw and cut some bone away from my jaw to test that theory but they was wrong again. I remember waking up and almost choking on my own blood where they had ripped all my teeth out and my mouth was still streaming blood from it as i woke from the sleeping aesthetic from the operation. The nurse shouting at me to bite down on this pile of wrapped up bandage so i could stop the bleeding and the pain shooting from my mouth was horrifying.

This is the reason i have not been able to go anywhere near a dentist to get the last three removed. I would rather put up with the pain than go through that again. I know the dentist isn't anything like the hospital its just i can’t stop thinking about it and then it puts me of going. Now the pain is slowly matching the same level as my head gets so it is getting bad and if i leave it something could happen so its time to go and seek help. I will just have to go to the dentist and try and put everything out of my mind. If i get the antibiotics to get rid of this infection i can then book in to get the teeth finally removed and get some new ones. Its about time i got it sorted so fingers crossed and wish me luck. i am not looking forward to the next couple of days.

If it’s not one *B* it’s the other *B*… my “B”ack this time!

Again i was wide awake at 4am this morning. Not from the beast but from my back this time. Aches and pains worst than having a tooth ache. No matter what i did i could not get rid of this awful ache in the back right in the middle. I tried to massage it but it was deep and it felt like i couldn’t reach it no matter how hard i pushed my knuckles into the back. I tried stretching, i tried bending, nothing was working. I tried laying on the floor for a while so i knew my back was straight but still all it did was ache. It wasn’t until i took some anti inflammatory tablets, that took around half hour to take effect, the ache in the back eased off. By the time it did ease i was already wide awake and there was no way i could get back to sleep. I tried laying on the bed in the dark but i could hear every noise inside the block of flats and outside the block. As i was trying so hard to get back to sleep the noises seemed to be amplified and sounded louder than they normally are. It was a wasted effort so after about 30-45 minuets i gave up and walked into the living room to watch some TV and see if i can bore myself to sleep.

Yesterday i managed to go the whole day with out having an bad attack so the one that was in the early hours was the only sign of the beast. i haven’t yet had any sign of an attack build and my neck is behaving itself at the moment also. I do have a tooth ache at the moment so am waiting till Monday and i will finally have to give in and go to the dentist no matter how much i don’t want to. At least if i go i will finally get the last of my teeth sorted and then they can start to build me a new set.

I started my new medication yesterday, Verapamil 80 mgs, so i am hoping this will soon start to help keep the attacks away and i will start to get longer pain free periods. You never know it could be why i haven’t yet had a sign of an attack this morning. I thought, with the nasty attack i had yesterday in the early hours, that my pain free period was over and i would be getting a run of bad attacks again. So far i have had nothing. A few small pains up the back whilst i am sat at the computer typing but other than that and a little bit of tooth ache i have been feeling well this morning.

Well only time will tell if it is working. I know for sure if i go out in the cold and i stay out for a while i will get an attack as i went out yesterday to call over my mothers and a nasty attack started to build. By the time i got to my mothers i thought i was about to have a massive attack the way my head and neck was feeling but suddenly it just stopped. So i remained pain free for the rest of the day. This has happened a couple of times to me lately, where the attack starts to build up and you feel the pressure and an ache in the areas that the attack normally effects and then suddenly it stops.

I am wondering if it is the medication that is doing that and stepping in to stop the attack from developing. Ever since i started taking the Pregabilin tablets i have noticed a big reduction in the amount of attacks i get and especially in the amount of big attacks. Now that i am at the max dose of 300 mgs in morning and 300 mgs in the evening i have noticed strange things happening when i get attacks like them suddenly disappearing before the main pain begins. I am sure as time goes on the tablets are building up in my system and that could be what is helping to stop the attacks. Now with the new meds maybe it will put an end to them full stop.

The trouble with my condition (CH) is that it could all be just down to the weather changes and now that we are heading into Spring and the temperature is increasing we are getting more high pressure fronts over us and less low pressure meaning better weather. My attacks start to get less and less the more closer we get to summer and warm weather. We already know that cold is a trigger for my condition and heat helps to ease the pain so it only makes sensei get less attacks depending on the time of year. I am just hoping it is the medication helping to improve my condition and not just the normal cycle of my condition and i end up back where i started from next winter. I don’t know if i have the strength to cope with it all again. things are improving at the moment and i just want them to start to let me live as normal life as i can. i don’t mind having to manage the condition with the drugs and treatment. having to take an injection when an attack come doesn’t bother me and as long as i have my oxygen to help also i can cope with a couple of attacks per week. Just wish they wasn’t every day.

The beast woke me again, but at least there is now light at the end of the tunnel….

Again woken by the beast at 2 am this morning with an attack but thankfully i managed to get back to sleep and then woke up again at 5 am. Its strange as i continued to be pain free for the rest of the day yesterday. It seems like the attacks have now moved to the early hours only, as that is the coldest part of the day. I am now positive the medication is keeping the attacks from appearing during the day so hope that now i will introduce the new drug Verapamil the attacks in the morning will soon be a thing of the past. I popped over my mothers yesterday to take some tobacco when i started to get pains in the neck and thought that an attack was about to start but thankfully by the time i got indoors and had a cup of strong coffee the attack just disappeared and no big attack developed but i did have neck and back pains. As i walked over to her house i could feel the cold on the neck and the head trying to aggravate my condition. It didn’t matter that i had wrapped up and was wearing my woolly hat to keep warm.

I am grateful that no other attacks developed during the day yesterday and hope that i can go the rest of today with out any attack also. With the weather a little unpredictable at the moment means the cold weather is still causing me problems so i still have to be a bit more careful what i do. I wanted to fish the competition on Sunday being held at Cefn Mably lakes but with the temperature forecast to drop again over the weekend it doesn’t look like i will be able to. I will just have to wait and see what the weather is like on Saturday and then make up my mind. It is forecast to be warming up again by the end of the week and then looks to be gradually getting better as time goes on so looks like it is the start of Spring. I can’t wait for the better weather and longer days as i will get so much more fishing in this year. This will signal the start of my tour of the lakes and fisheries of Wales. I also have to remember to renew my fishing licence next month otherwise i could risk a fine and my fishing tackle being confiscated if i am caught fishing with out one. So it is better not to risk it and make sure i have them, more expense.

Ever since i have returned to the UK from Cyprus in 2002 i have been shocked at the price of things especially the price of fishing tackle. I remember when i was younger and it wasn’t so expensive to go fishing. A little set up wouldn’t cost more than £20 and then your membership to the fishing club of the area. This would entitle you to fish certain rivers and gravel pits free of charge for a year. Here in Cardiff they don’t do that sort of thing either that or they have changed it and now even with the membership you still have to purchase your day tickets. I don’t see the point in joining the clubs any more as it is just as easy to pay the full price of the day ticket and fish for the day that you want and not have to pay for yearly memberships. If you do have a membership you only save £2 per day so its not a huge saving, considering the cost of membership per year is anything from £50 to £200 depending on the club and even if you fished “every” weekend through the year it still wouldn’t save you enough money to warrant getting a full membership.

I am starting to rattle on and go off the subject of my illness now, makes a change from all the moaning and groining from pain all the time. Its nice to sit at the computer and be pain free for a change as even my back is behaving itself this morning but for how long, i don't know. I am hoping that it isn’t too cold outside today as i have a bit of running around to do. Every Friday is my payday so i have to go shopping and pay all the bills including electric and gas. My gas bill is enormous lately as i have had to keep the flat in the 15 and above degree mark. If the temperature of the flat drops below 10 then i start to get attacks and the head becomes very bad. I know it sounds crazy but that's just the way it is. I have tripled my gas usage in the last year due to my head attacks and have never spent so much money on utilities before now.

At least with the winter coming to an end and the temperatures rising i will now use less and less gas each month so my bill will be going down and my money in pocket going up. I am just hoping by next winter i will have these attacks under control once and for all with the use of medication and oxygen on a daily basis. I don’t mind having to do this as it keeps the attacks away and i have finally come to terms with the fact that i will now have this condition for the rest of my life. It has taken me a while to accept the fact of my condition as i was hoping for a quick fix. Something inside me told me it was something on the head that was causing the swelling and that was what was causing the attacks to be so bad and so regular. Now i have had a scan and they have shown me that my head is clear of any problems it is now easier to come to terms with the condition.

As the specialist said i have to start concentrating on not getting the attacks in the first place and not worry about the actual attack itself as there is nothing i can do about them apart from let them take their coarse. There is no pain killer that will stop them. The injections are the only thing that will help to abort them and with the use of the oxygen it helps to reduce the size of the attack and the amount of time you have to suffer when one appears. There are a few other things i can try, such as nasal drops or going into hospital and being put on a drip, in order to reduce the amount of attacks i get. He has offered me to go into hospital just for some rest if i get a long period of attacks with no sign of break, so its another option i have available in order to deal with this condition. With all the help and support i have from my family and friends and also the doctors who are now on my side and doing everything they can in order to get the attacks under control, the future is starting to look bright and finally, after many years, there is a small light appearing at the end of a long twisted tunnel.

Beast woke me at 2am just to remind me how painful CH is….

Unfortunately i only managed a pain free break of 5 days as i was again woken by the beast this morning with an attack from hell. Just to remind me of how painful this condition is. The pain this morning just kept on increasing no matter what i tried. The injection failed to work and no amount of massaging or rubbing was going to stop this attack. Normally when i massage my head it helps to ease the pain but this time it wasn’t. All it did do was aggravate it to the maximum and make the attack feel even worst than it already was.

The beast actually woke me at 2am this morning but the attacks lasted just over an hour and by the time i got back into bed i was exhausted and couldn’t hardly move my back. The pain i was getting in the middle of my shoulders, because of the head, was making my eyes water constantly. No matter what position i laid in or sat in i couldn’t get comfortable or stop the pain in the back. It was about 7 am this morning when the back pain finally eased off enough for me to get comfortable, but by that time i was already wide awake. So any chance of getting back to sleep was gone, and yet again i have been up all morning trying to deal with pain.

I have to take comfort in the fact that i know the doctors and specialists are trying every thing they can and investigating all areas including my back to see if they can find out what is causing it to be so bad all the time. I remember when i only used to have the attacks every month or every couple of months. When i used to think it was just migraines and i would eat as many pain killers as i could get my hands on, to get rid of the pain, but nothing seemed to work. Back in them days at least the attacks were only once in a while and not every day like they are now.

I am hoping with the change in the weather and more warmer fronts coming I will get a lot more pain free periods and they should last longer than just a few days. I used to get weeks in between attacks instead of days so i am hoping to go back to a time like that. If i can get them only to appear once in a while then i can live with the condition if it is manageable with the medication i am now on. I don’t mind having to live with these attacks as long as i am the one in control and not the attacks. It makes me mad sometimes when i only get a couple of days break and then i am back to attack after attack. It makes me feel like i am being punished for something i have done in my younger years or a past life, but surely no one should be punished and left in this much pain all the time, its crewel to let anything suffer in such a way.

If a dog had this condition or another animal i am sure we wouldn’t leave it in pain all the time and would eventually put it to sleep rather than let it suffer. And NO i don’t want to be put to sleep, i just want a way of controlling and stopping the attacks. Something that works better than these injections as i can only have two in a 24 hour period and sometimes i can get 8 or 10 attacks in a day. Ok only 3 or 4 will be massive attacks that i would normally use the injection for as the others would be smaller and more manageable and i am able now to ride out the pain of the smaller attacks.

The only way i can describe the difference between a small attack and a big one is that a large attack is like having your legs and arms cut off slowly with a blunt saw and no pain relief or anaesthesia would be used and no pain killer will stop the pain. The smaller attacks are like having tooth ache and can be ignored with the help of an anti inflammatory pain killer. Both of the attacks seem to leave my back in agony and both end up making me walk funny and constantly get shooting pains up and down the spine.

I can only assume it is because of the damaged nerve and as the nerve swells up in the head it must be swelling in the base of my neck and at the top of my spine. This will in turn make the other nerves in the spine tender and that is why i get the pain down the back. The pain at the top of the spine between the shoulders and in the neck is from the head attacks but the pain at the bottom of the spine and when i walk is from something else. Until i go and see the back pain specialist i won’t know what is causing it and just hope as the warmer temperatures come with nicer weather this will improve and i won’t be in so much pain all the time. I am hoping it is nothing serious and can be dealt with by means of medication and physiotherapy.

Well for now all i can do is try not to move around too much and hope the pain stays away for the rest of the day. The sun is shining outside even though the weather is feeling cold and the forecast doesn’t look like it is going to warm up till the weekend. There is a fishing match on Sunday at one of the local lakes being held by my local club Llanrumney Angling Club, which i am a member off, so i should try and show face and go and fish the match. I can only do this if my head starts to behave and the weather isn’t too cold. Fingers crossed as it means i will get to go fishing again. I don’t know why i have fallen in love with fishing so badly this time around. I know i loved it when i was younger and would make any excuse to go when in the summer holidays, but never imagined i would be doing it again i my late 30’s and early 40’s.

Fishing seems to calm me down and take my mind off all my worries. It really does have a strange effect on me, as when i get my the lake side and start to think about water craft and how i am going to catch the fish, all the pain in my back and neck seems to ease away and i don’t even get a twinge in my head. If i move to suddenly or try and lift a heavy weight then yes, i do get shooting pains up the back and pain in the base of the back. But if i sit still and relax in my chair, whilst fishing, all the pains go away. It helps me relax and is enjoyable at the same time.

By the end of a days fishing i feel shattered and when i get home i am guaranteed a good nights sleep. The only trouble is as son as i finish fishing and head home the aches and pains start to slowly appear again and remind me that i am suffering from CH and how painful the condition really is.