Woken again at 2 am This Morning …..

I have been woken by the Beast yet again his morning at 2 am and has left ne with a strong shadow so there is just no way i could go back to sleep. All i have been dong is laying on the sofa nursing my eye with a  cool towel waiting for the pain in the back to ease away so i can move around. I have noticed my balance has gone all weird and i keep bumping into things with my left side so i have to be careful.

Why it has suddenly gone like that i don't know it seems to be ever since i went fishing on Saturday and as we fished through the night i ended up having 2 nasty attacks during the night and thank god John was there with me as my back locked in a strange position and i asked him no matter how much i screamed to pull me up and straighten me out and t worked. Ever since this strange attack my balance had gone all funny so i will have to report it to the doctor on my next appointment.

Finally the letter came for my MRI scan on the base of the spine to see what is causing me all theses problems when i am walking and why there is so much pain. It could just be muscular and i am praying that is all it is but my mother suffers with very bad arthritis and started suffering the same way i have started so its a bit worrying that its in the family and i will have no choice but to suffer with arthritis when i am older. At least we now have an appointment on the 28th March 2014 at 11.20am so i will have to make sure i get there early so don't miss my slot otherwise i could be waiting another year or 2 for the next available appointment.

I had my meeting with Helen from CAU who is my share-care nurse and if i have any major problems i am able to ring her and she will try and help as much as she can. She has  given me the addresses of some companies that deal in caring in the community and also cheap transport to and from the hospital as apparently due to my condition i am entitled to the transport in order to attend my appointments. This is all new to me and i didn't know until yesterday day so i will give them a ring a few days before the appointment and arrange transport that was as  can’t keep relying on my mother and step father who are both ill themselves so its a little unfair to assume they will always come and take me.

On a sad note Helen will be retiring from CAU soon as she has been one of the best share care nurses i have had to date and its such a shame to loose someone you can actually talk to and know that they are not ju6ts going to brush you off or give you a load of BS they tell you how it is and what you have to do. I will be sorry to see her go and she will be surely missed.

Another Early morning wake up by the Beast…..

Another wake up call from the beast this morning at3 am again with an attack that just over powered my injection. The [ain was so strong i couldn’t walk properly as my balance was all out of sync and i kept walking into the walls as i made my way into the living room. These early morning wake up calls can become a pain as all i end up doing is staying awake, watching TV and writing my blog on the computer.

I wouldn’t mind so much if i was fishing as the fish seem to feed better in the early hours so being up at this time would actually be a bonus. Thankfully we are off fishing for the weekend tomorrow with my mate John Rees and my Step-father Brian Lloyd. Brian is only joining us for half a days fishing as he doesn’t like t leave my mother alone to long even though my brother is there and i can’ fault him or that.

Myself and Jon will be fishing right through the night and through the next day so we will get all day Saturday and all day Sunday to see if we can  catch a big Carp I am jut hoping the weather holds and we don't end up with gales during the night as this will jus spoil the tip and means we would have to take the rods out of the water until the storm has passed. I don’t think so as the weather forecast for the next few days are looking good.

I have all my medication ready to take with me just in case the head decides to play up and i am also taking a spare set of clothes not only in case i fall in the water but also if i start to feel cold i will start putting layers on so that i don't catch a cold. So far this winter has been mild and no where near as cold as it was last winter so its all looking promising and with some new baits and tackle to try out we should have a enjoyable weekend. (Fingers Crossed)

Depression so bad i felt i had been hit around the head with a baseball bat!

For the first time in over 5 years i have ha to struggle hard with my depression. It just started out of a chain of things that went wrong yesterday. Being let down by friends whom you normally look after if they are in trouble but when the shoe is on the other foot its a different matter. I should really have been feeling happy and excited as i am going fishing on Saturday as long as the weather holds and my health is ok then we are off on our first trip of 2014.

The depression was so bad yesterday talk about having harmful thoughts about hurting yourself. For over 6 hours last night i had to fight the urge to do something stupid. This has really worried me a i haven’t felt like this for a long long time and the last time i did feel like it i was locked away in a mental hospital for my own safety and i don't want to end up in that situation again. All i want to do is concentrate on my fishing and get on with my life  but it seems like i keep getting knocked back every step i take.

I ended up getting a few valium of a friend of mine and a couple of sleeping tables sat with a cup of coffee waiting for the valium to start to take effect and then took my sleepers and went to bed, It seemed to do the trick as i fell asleep straight away and didn't wake until 6 am this morning. Not even the Beast was able to wake me. So i managed to get a good full nights sleep. When i woke this morning i felt fine and then all of a sudden an over whelming feeling of depression and feeling low came over me like a dark cloud covering your whole body. It can only bee the same depression as nothing else as happened to set it off. Maybe all i did by taking the valium and sleepers was delay the inevitable and the depression has returned once again with vengeance.

So again i have another day having to battle with these feelings that i don’t want and don't even know where they come from. I have spend all week getting ready for my fishing trip and trying to make sure i have everything wee need for the trip. Something inside me tells me that something will go wrong on or something will stop us going. Its probably just the depression playing tricks on the mind like it does so i am hoping this cycle will break before the weekend starts.

No attack this morning just a bad shadow, is it all worth it…..

Sometimes i just feel like giving up and wonder is it all worth its having to suffer pain every day, and then i think about all the people out there that are also suffering and that feeling of not being alone for one second is what brings back my strength and hope that something can eventually be done about it. So far most mornings is when u have the worst attacks and t is so hard to keep going all he time. The depression becomes hard and gets on top of you and you just cry for hours for no apparent reason even just spilling a drink can cause out to break down.

There has been many a time i have just wanted i all to stop so much and had to push the dark thoughts to the back of my mind and ignore them. Feelings of hurting and feelings of ending it all are not normal feelings they are fake and its the illness that brings them on so i have to fight hard when they come. I am slowly loosing strength and hope i can continue going. Each time the depression comes its getting harder to shut these feelings away and for the first time ever i broke down in front of my fishing partner John witch was a bit embarrassing but he understood. He has been a god send to me and have helped me so much but now its time to get my mind off my illness and back on the fishing.

We have planned a trip to the local lake on Saturday 22nd February and we will fish right through the night and the next days and come home around 8pm Sunday evening. We know the days wont be so bad but we are making sure w can wrap up if the night becomes very cold and frosty and we will take every precaution possible. I am excited about getting out fishing and trying out some new baits that we are waiting for and some new rigs that we have been testing, I am just hoping nothing happened from  now until then to stop the trip if that happened i don't know how  i would cope, i need to get out of this damb flat staring at the walls all the time waiting to get out to go fishing is making me nuts.

Fingers crossed everything goes ok with the doctors and i don’t want  to get any surprises when i go there as i don't think i could cope anymore i am on the edge and about to snap. Although i feel fine and my body seems back to normal after taking those weird tablets i am hoping it stays like this and when the summer comes the attacks will decrease as they normally do and i wont have so many so with his being a mild winter i should e ok. I will stay with the pregabilin at a low dowse as not to aggravate the side effects and the injections and oxygen and the wait for my next appointment with the specialist,

Another wake up call but feeling a bit better

Yet another wake up call from he beast to start the day. I am feeling a lot clearer head today for some reason not so pressured and dark as i can describe it, but actually think without being confused.The last couple of days have been painful ones with attacks happening through the day i am hoping it is starting to calm down again as when it gets like this it seems to calm and i only get one or 2 attacks in a day.

My back and sides are not so sore today either so it looks like a promising day. I just wish i had they means to go fishing as the weather has ben nice the last couple of gays. I have booked a trip 2 days and one night to see if we can get out first winter carp. I cant wait for this trip i have been preparing for so long. The first trip outs are always the interesting ones as you are getting used to new gear and tactics.

After everything i have been through i deserve a break. I have the doctor's again tomorrow for my six week check-up. I also have to report on the new drugs i was taking and what was happening to me over a week. I will not be taking them again nor will i take anything other than the pregabilin until i see me specialist again.

Woken early again, sweet dreams

Well yet again i have been woken just past midnight with yet another attack from the Beast! Again it almost lasted an hour but thankfully the injection worked and put a stop to the attack just in time. Again i have to stay awake as i have now got strong shadows on the left side of the head like some one pushing down on it constantly so there is now ay of getting back to sleep. All i can do is take my mediation and lay on the sofa watching TV and hoping i doze off or actually get some rest.

Its mad is i star dong the house work as i am normally done y 8 a and then have nothing to do for the rest of the day, I am going to have to go fishing soon as i don't mind waking up at this time by the lake setting up new traps to catch the big fish. It’s fun when you are dong something you like but for the moment all i can do is take a lay down and hope i drift back off to sleep so i will update my blog later as to how i get on..

Sweet Dreams

Up early again with more attacks, give me a break

Another attack in the early hours this time at 12.30 and lasted just over an hour. As soon as the attack as over i jumped on the computer to try and wake myself up a bit as i have strong shadows and there us no way i could go back to sleep as i can feel the pressure and other attacks building.

It so not fair i feel like i am living like a zombie. I am up all night long as  just cant sleep as the drop in temperature is just causing the attacks to set off so i end un kipping during the day time to make up for the los of sleep. The pain i am currently getting on the left side of the face feels like someone is cutting it of slowly. This is after an attack so you can imagine the pain levels it gets to. My neck feels like i have a ball stuck in the side of it and the pain down my back is almost crippling .

These will now slowly reduce as the day goes on and the medication takes over. Thankfully the Pregabilin is still working on the attacks as the last lot of tablets i was given almost killed me. the side effects were so bad i was having fits on the floor. I now have to wait another 4 months before i can see the specialist to tell him they didn't work and get something new to try. At least my injections and oxygen still works so  do get some help and relief.

I had my six monthly interview with the social yesterday and ended up having a panic attack as they didn't even know about my condition at first and was waiting to turn up for an appointment at the office, I had rang a phew days before telling them i couldn’t make it but some gut called Phil said not to worry they would call me at m appointment time.I waited and hour after the time and still nothing so i rag them t find out what was happening and no on knew about it and who this Paul was. I thought oh no here we go i m going to loose y benefits and there is nothing i can do about it as i cant get to the office. Thankfully this lovely gentleman listened to my story and seemed to understand my condition and understand how it made me. He put my mind at rest and there's is nothing to worry about. My benefits will continue and i have to write to their head office updating on them on the decease in my health.

I wish i didn't have to report a decrease as i was hoping to get better. To be honest i thought they would find something with the scans ad say this is what is causing it and n operation will put to right. Its hard having to accept you have no cure for your condition an you have to fight these attacks for the of what life i have left. How do i explain that to the government what di i say and put. Sorry but my life is screwed and there's sod all i can do about it. i have to spend the rest of my life taking strong drugs that really mess me up and have bad side effects. Happy days ahead,

The only break i get from all this is when i go out fishing. Even though i still have attacks inside my tent i don't get anywhere a near as i normally do. Either its the fresh air or being outside relaxing something seems to calm then when i fish so i have to get out soon. As soon as this weather calms down i am gone for a couple of days and see if i can get my head to calm down a bit. I really do need it.

Another Attack and feeling so low at the moment.

Again i have been woken at3 am this morning leaving me feel strange after taking my injection in order to stop the attack. At first i thought the attack was going to over power the injection but suddenly it has kicked in and left my chest feeling tight and my head feel like i am light headed and strange. I keep getting pain in my chest and have taken aspirin just in case if anything it will help ease the pain. I hate mornings like this as now i have to stay up all morning watching crap on the TV waiting for the next attack if it appears at all. the neck is sore and the back painful so it is likely i have another coming as i have some very strong shadows at the moment and the feeling of pressure i like someone trying to cut into he top of my head.

I do try and stay as positive as i can when these things happen people don't realise i am dying inside. I am slowly loosing the will to fight anymore. Each day it gets harder and harder and each time a medication doesn't work it feels like .nothing will and i am just waiting for the attack i will no recover from. I don't want to sound so low and with no hope but i am very low at the moment and its part off my illness but i wont hide anything from my blog it has to be how i feel and what is happening.

At the moment it has taken well over an hour to recover enough to jump on he computer and write my feelings and thoughts and its hard to let the truth out knowing you are on you own sat in a flat with no one to help or company to rely on (by choice as its difficult to find a partner when you are to scared to go 10 mins from your home) It’s hard letting our protective wall down when you are out as all you can think about is the next attack and when it will come.. Don’t get me wrong i got some superb friends that come and help me out and my mate John Rees is a god send to me the amount je helps out when i am ill and never asks for nothing, what i actually call a true friend and always will look after him.

All i feel is i have to suffer this condition for he rest of my life and have to endure pain like no other. There is no cure for the condition and only experimental drugs that some very bad effects that  have to go through one by one until i find the ones that suit me is gong to be interesting enough let alone putting up with the attack

IS IT REALLY WORTH GOING THROUH ALL THAT?!

I feel week as a kitten and light headed and have  to do an interview for the social so this should be interesting, Thank god they agreed to call me at home otherwise i wouldn't be able to do it a i wouldn’t make it with out having an attack

Another attack but trying to stay positive

Another early morning wake up call from the beast with an attack so strong it again over powered he injections. This is the second day i have been bad al morning. Yesterday it started at 10pm in the evening and didn't stop all night i was up laying on the sofa watching rubbish on the TV as i just couldn’t go back to sleep due to fear of having another attack. For some reason the body just couldn't seem to relax and i have been suffering some bad anxiety just lately witch i think is due to stress and worry but it has been getting easier over the last couple of days.

I have cheated the last night as my friend brought me a valium to calm me down and hopefully help to put me to sleep. It did work eventually and i must have fallen asleep around 7 to 8 pm last night and managed to sleep through until 3 am when the attacks started again. Thankfully i have had enough rest so i don't feel so bad today but still feel a bit groggy and in pain from the attack. I can’t keep self medicating as this just leads to bigger problems in the end.

I will wait another week now to see if he anxiety starts to go as it could just be that other drug coming out of my system still. If it doesn’t settle after another week i will have to go back to the doctors and tell then what is going on. Things had started to look up and i have ben feeling very positive but then the other day i dropped like a brick and broke down. Thank god there was no one around as i would have just lost the plot instead i just lay there crying into my pillow for over 5 hours until the overwhelming feeling of doom and gloom had gone and i started to feel much better.

he trouble with suffering bi-polar disorder on top of my illness is i have to watch the lows and the highs and i believe i was on my way u heading for a high period so in fact i am grateful for the depression bringing me back down to earth and get my mind back on track and thinking straight again. You would think with all the different things i have had gone wrong with my health due to medication and side effects i would be used to new feelings and problems but no matter how hard you try you just can’t shale the feeling that you are ill.

Things have been looking better for me jus lately and i have been planning a fishing trip to start my season off and we are now just waiting on bait to arrive and the storms to give us a break and then we are off fishing. I have packed every thing away ready so its just put our food together, make sure we have plenty to drink and eat and that we will be able to stay warm. The trouble is its a hell of a lot of gear and can’t just be carried to the lake so i am having to purchase a special barrow that is designed for disabled people and people with bad backs, As soon as the barrow arrives it means we can get to the 3 closets venues with ease and with out having to carry a thing as you can put it all on the trolley/barrow even the rod bags can be strapped on top to save us from staging ourselves.

God i can’t wait t get out and go fishing. Jus to be able to get out of the flat for a while will be amazing and a couple of days by the lake side testing out new bait and equipment will be brilliant. My team partner John Rees is also as anxious to get out fishing as i am and even he cant wait. We have been doing so much preparation working, making rigs and putting together ready made PVA bags filled with a special attractant to see if we can bring on the bites a lot faster. If this works it will be great and we have lots of new baits and styles to try out so it should keep us busy for quite some time. This season is looking to be a god one and if all goes to plan we could even be looking to go to France next year to see if we can catch some of the monsters over their.

Can’ believe the “Beast” is Back!

Again i have again been woken by the Beast again this morning twice at 1 am and 1.30 am The first wasn’t so bad so i decided to try and get back to sleep but that turned out to be a huge mistake as the second attack was ne f he worst ones i have had in a long time lasting well over an hour and a half. It has left me with back pain like you wouldn’t believe and sharp shooting pains all up and down the spin including in the neck.

I was hoping to have a break from the Beast for a while as i seemed to have bee feeling well but for some reason i really felt the cold on my head this morning and it set it off. I am sat at the computer with my one eye half closed from the attack drinking a cup of coffee trying to breath a bi of life back into my body as each attack i get seems to train and take all my strength away in seconds.

So it looks like another early morning watching rubbish repeats on the TV or messing about on the computer. I really do wish i was fishing instead at this time in the morning i would probably be playing in a big carp or waiting for the bite at least as that’s their main feeding time in the mornings. I so wish i was fishing right now its crazy.  have to get out soon or i am going to go nuts. I will have to arrange his fishing trip next weekend or during the week as we have a storm coming first and will have to let that pass before we can get out on the lake.

Lets hope the beast will now stay away for the rest of the day now and i can chill and just watch TV as the pain slowly eases  away. The last thing i need is more attacks during the day making it painful all day long. I don’t think i could cope right now. Things had finally bee going well for me for a couple of days but now its turned painful lets hope that’s all it will be.

Back on line but almost lost the plot on more than one occasion

Hooray final got my computer back online after making a stupid mistake with he bank and then having to wait a couple of days with no computer connection was driving me insane. It’s surprising how reliant we become on then with e-mail and messaging each other not to mention Facebook and Twitter. Now the mistake is rectified i can get back to Normal business and try and get my head under control. I am still getting the early morning wake up call at around 2 or 3 am every morning. Sometimes its just a shadow and i can shake it off but other times i end up having full blown attacks for well over an hour and that time in the morning you are not at your strongest but somehow have to deal with what i can only describe as hell.

he amount of attacks in the morning i have now lost count there has been that many but there has been an improvement this year as it hasn't been so cold this winter it has really given me a chance of a break and hopefully seek help to get it under control. They have tried me on a new medication known as Topiramate it is supposed to be for people who suffer big epileptic fits and the warnings that come with the medication was unreal. Well i was in for the biggest shock of my life.

I took the tablet and settled down on the computer trying to do some work on my web site and my eye sight started to go strange so i stopped. I decided to do a bit of cleaning and cleaned the kitchen but when mopping the floor my heart started to really race hard and i am not talking like a normal panic attack it was like it was about to jump out of my chest. I dropped the mop ran into the living room and got on my oxygen just in case something was happening.

This then calmed down after an hour had passed and i kept on concentrating on my breathing. I then continued my day onlnly to have another atack about 20 minuets after the first one but not as severe. These attack kept on coming right through the day and i was also becoming very confused and agitated. I continued the tablet the next morning to see if it was just something that happened that day but again it set me off and i became so confused i was loosing things and forgetting what i was doing. I would walk miles and not know why i had gone.

I even had a full fit where i fell to the floor shaking as if i was an epileptic and it was my friend John that saved me that day. I continued these tablets for a week to see if the would settle down but i became another person. I didn't know what time of day it was or what year we was in i couldn't even work out hoe to make a cup of coffee with out burning myself every time. My friend John had to stay with me just for my own safety as all the time i was having fits ad becoming like cabbage making sure i actually whent to the toilet and not did it where i was standing because i couldn't work out where the toilets where, and i was in my own flat.

As you can imagine i have stopped taking these tablets and advise anyone if they are ever given them do not take them. You cant stop shaking to the point of wanting to chop off your own hands and you cant stop wetting yourself and even soiling yourself when walking down the street even to the point where you pea blood. These tablets are one of the most dangerous tablets i have ever taken. Ok maybe they work on epileptics who are having bad fits but that's not what i have. I suffer CH its completely different. I understand that they have to test different medication before we find the right one but i don't want to die whilst trying, I would rather stay with the injections and the pregabilin i an on now and suffer when i stiffer than go through all that again.

So its back to the drawing board and now i have to wait another 4 months to see the specialist to get the next medication. I will try and leave him a message to tell him what happened and maybe i will get seen sooner but i know he is so busy. So in the mean time its get on with it and get myself ready for a wicked carp fishing trip. yeh ha!

Sticking with the Pregabilin Medication drove me insane ….

I have given my best shot with regards to the new drug Topiramaz and there is now way on the planet i am taking it. To start with i had daily panic attacks constantly through out the day ad they never really stopped i just became used to them. Each day my eyes would involuntary start moving about and no matter what i tried to do it wouldn't stop them.  had really bad het pains constantly whilst on the drug for a week and now i am off y nerves are only just starting to return to normal.  Also suddenly fits for no reason and dropping to the floor shaking. My poor mate with me could only  watch on and let it takes its course ensuring i don't bite my tongue. The doctor did dell me there was a risk that it could drop the fit threshold due to other medication but by he looks of things it had some serious side effects and how mad it has made me feel i am not touching those again.. A Week of torture and actually loosing my mind ins enough excitement fir me for a while. And the amount of temper i had whilst on them they should be banned i was raging and wanted to go out and hurt people it took my temper t levels i never thought possible and is one thing i would really lie to put behind me.

hopefully planning my first fishing trip of the season, we are going to have 3 days camping down on the local lake just in case anything happens, You never know with my head so i would rather be safer than sorry and spending the night in cold conditions isn't he best idea but i really do need this trip i need to get away for a while and try and find myself again. I fancy going out and hunting down some of the bigger of the fish and see if we can get some monsters.

I have made up some special bait an bags that will almost certainly get me the fish i am after so i am really looking forwards to a trip. We are just waiting for the next frost to end mid February then we are out camping and starting out new season for 1014