Thursday 6th March 2014
I have again been woken up by the beast at 2.30am this morning with attack after attack, So far i have had 3 attacks in just under 3 hours. Thankfully my injection worked on the first one so i didn't have to suffer for long but the second attack lasted well over an hour and then i was forced into using my last injection on the 3rd attack as it was gong to be a bad one. Even though i had taken the injection i still had to go through the first 15-20 minuets of the attack witch is when it is at its most painful but thanks to the injection it was over very quickly.
Trouble is i have now run out of injections a day early as i cheated the other day as i was having so many attacks so instead of having only 2 injections to abort 2 attacks out of about 8 or 10 in a day i decided to have half of the injection instead allowing me 4 halves so i could abort 4 attacks instead of just 2. The trouble doing this is that you end up wasting the other half of the injection and use double the amount of injection pens so you end up running out earlier. I wish there was a way i could save the other half and then administer it myself. The last couple of weeks have been really bad with pains in my back and neck and so many attacks i am actually getting worst than i was when they first became daily attacks.
They seem to have jumped back up to between 4 and 8 attacks every day instead on just a couple per day and now its most days at the moment. At least i was getting short breaks from the attacks as i would have 3 or 4 bad days then one or 2 god and then 6 bad then 3 good then 5 bad and then followed by 3 good days. So as you can tell i was at least getting some break and rest in between bouts of attacks. Most of the attacks have been during the night and the early hours with the odd 2 or 3 attacks appearing during the day time. The last 2 weeks i have had attacks every day including the days where we tried to go out fishing as the weather seems to get to the neck and set them off so i spent most of my time laid in my bivvi recovering from the attacks.
At the moment i am cut off from the Internet so i can't update my blog unless i tether it to my mobile phone and i cant be bothered going through all the hassle especially when i am feeling so bad It’s only because i am a week late paying my bill so i should be back online within the week so i will write my blog every day and then just update it at the end of the week. Should be an interesting long read the way things are going. I am just praying my back and head behaves itself today as i don’t have any more injections and wont have any more till Friday that IF they have managed to get them in. I Will give the chemist a ring later just to see if they have managed to get hold of my injections as i don't think i can go a whole week with no help what so ever.
Friday 7th March 2014
Boy have i been having some attacks just lately it seems i am going through a bad bout of attacks as all day yesterday i would get attacks followed by strong shadows all through the day and the again this morning at 01:00 and again at 02:30 and then the shadows are so strong it feels like the attack isn't over and is waiting to kick off again. They have been really bad attacks too, making me sweat like a shower had been turned on. Making the left side of my face droop and swell. Making a line swell up over the top of the left side of my head into the back of the neck aggravating the neck itself making it feel like it is going to start off an attack.
I have also noticed pains in the chest but in the actual muscle of the chest on the right and left side. Every now and again i will get a sharp pain in the muscle and have to massage it till it eases. When i get it on the left i worry a bit more and don’t massage it as much as i don't want to make it worst or start thinking i have problems with my heart. The pains are just general and i think its the cold weather that's making me get aches and pains in different places. I am starting o believe, on to of everything else, i have arthritis. Isn't it enough i have to suffer these attacks all the time and side effects of medication. I don’t kneed more added to the list.
I had my phone call from the social to check up on my illness and progress and was shocked when he told me how i was i didn't really have to say a thing. He apologised for having to ring and do the interview and it was more of a chat than an interview it was very nice, the guy seemed very professional. He advised me on how i should write a letter to the head of the social department for ESA claims and inform them that my illness is worst and due t its nature will get worst over time and there is no cure just management through medication. He old me i had no chance of going back to work and i should even think about it with my condition at the stage it is at. I am to get copies of all the letters from between the specialist and the doctor and send them along with the letter so it can be placed on record and then they will stop having to call me every 3 to 6 months checking up on me. he also said i should update the DLA about my condition is getting worst but at the moment they are all at standstill until they make the change over to a new benefit.
I am now starting to thing about having a part time carer here with me at the flat so when i a bad he can help out with things that i cant cope with. My mother was and still is my main carer but there is not a lot she can do now with having to have blood dialysis every week. Ok she can do it at home and she can hep me hen it come to writing letters but when i am bad and i have my low periods because of the bi-polar it would be wrong to give her the stress and worry now so its about time i thought of a carer. John Rees, one of my best friends, has been a god send and has helped me out so many times i cant thank him enough and he has volunteered to be a part tie carer so i am going to ring u the social DLA and carers help line and ask their advice as he is also seeking work Because most of the help needed is first thing in morning and through evening and late night and early morning we find that his day is free so he is still going to seek work so i want to find out how we can make it official and notify them that he cares for me part time but can still look for work so he doesn't get in trouble with them. That's the last thing we want.
I have to make an appointment with the doctor firstly to inform her that i am about to have my MRI for the bottom of my spine at last to see what is going on. I also want to see her about advice about pain killers for the after attack pains that are left in the neck and back. Maybe i need to start taking Naproxen again as i don;t want to start eating pain killers like sweets again. That's what got me in trouble in the first place, but back then they though i was just getting migraines ever couple of months and didn't know about this condition. It’s was just by luck i met specialist that also suffers the condition like i do and even my chemist has suffered from mild CH and gets attacks if he gets stressed. I was surprised how many people i know who suffers the same or something similar. Hal of them haven't had the proper diagnosis yet but there are more than people know. Most are just migraine sufferers but one or two that i know need to be seen by a specialist and get checked out as they show all the signs of having CH and believe me when you are told you have a condition that is more painful than amputation with out anaesthetic and that there is no cure for the condition and you will suffer the rest of your life is one hell of a kick in the nuts.
Saturday 8th March 2014
Again i have been woken in the early hours but no so early this time it was around 05:30 when the beast decided up pay a visit and thankfully the chemist had my injections in when i went there yesterday to pick up my monthly medication. I still had to go through the firs 15 to 20 minuets of the attack but as soon as the injection kicked it it stopped instantly.
I still couldn't go back to sleep even though the injection had got rid of my attack as i am stull getting strong shadows, a feeling of pressure building up on the left side of my head. So yet again its laid on the sofa lie a zombie waiting for the day to start watching a load of rubbish on TV. At least can have a break and write up my blog but i am still going to be offline until Tuesday but at least i will be double the speed when i re connect it.
I am also upgrading my computer system to make it a lot more powerful and be able to run the entire of fishing adventures ales direct from my system. e are updating it to 4GB memory on a dual core processor running window 8.1 with a Terabyte of storage space and 100MBS Internet connection with unlimited download. I Think that will last me quite some time. It will also be running 2 monitors with a splitter so you can be doing 2 different sets of work at the same time. the storage space will help as we don't want to loose the picture of all the fish we have caught over the years.
Each fish is photographed and documented even the small fish. This way there is an actual record of exactly how many fish each member of FAW catches and the dates,times,size and weight of each fish.. This will eventually build up a big database of the fish in the different lakes and when you catch the same one twice you will know as they all have their own distinguishing marks shapes and sizes making each fish individual.
Well my back is starting to hurt so its back to the sofa to chill out and hop an attack doesn’t start building and i end up having another this morning as the back pain on its own is bad enough and the pain i get in my shoulders because of all the aches and pains is enough for anyone to suffer with out having the CH attacks as well. Let hope my MRI scan on the 28th March 2014 at 11:20 will start to shed some light on the subject and we can start to narrow things down to the causes of the pain and finally get some help arranged. Lets hope this year, 2014, will e MY year, i finally start to get all these problems under control and really get my fishing up and flying.
Sunday 9th March 2014
The gates of hell opened and the demons on by one came flooding through attacking my head constantly one after the other. Nothing i could do would stop the pain. The level was so bad even the injection had no effect on the pain or the length of the attack what so ever. It felt like my face was being ripped off my skull all over the left had side of the head. The eye was flooding with water and swollen making it difficult to see and it felt like my eye ball was being pushed through the back of my head with a blunt interment,. The pain kevels wee so high i don’t remember the last time i had one this bad. All i could do was roll about on the ground holding my head as tight as i could as if it was trying to explode. I kept banging my head on the ground hoping to crack it open and release what demon is inside out. All i could do was scream out to god for it to stop and prayed for death to come swiftly and painlessly and wanted he agony to end.
I have had a few attacks where i have been very scared and thought i was going to die and wanted the end to come quick but only a couple that have really scared me and the one i had tis morning scared me as i am still feeling the effects of the attack and the pressure on the left side of my face and its now 14:30, this all started at 01:15 so as you can imagine the side effects of the attacks have ben going on for a long time and it feels like its going to build into another bad attack that will be just as painful as the other. I am praying this isn’t the case and am trying to keep my injection for that attack if it comes. All i can do is now relax and try and get some sleep before the beast returns in the early hours to fight again.
Monday 10th March 2014
Thankfully the beast decided to stay asleep until 5 am and then decided to attack me this morning so i managed to get a few extra hours before i had to get out of bed and deal with the pains for another day. My back is getting bed and i now get periods where the pain is so much it makes you sweat buckets and you have a constant ache up the back originating from the centre and spreading equally left and right across the back. Normally the back is only really bad after i have had a bout of head attacks but today for some reason it is playing u on its own and there is no reason for it be so bad. There’s nothing much i can do about it apart from rest it or exercise it , its difficult to know which one to do.
It’s not long now until i get my MRI scan of the base of my spine so i can find out why i get these aches and pains and are they just down to muscular problems or side effects of my medication or is there some thing else going on that is causing the back to hurt all the time. The date of the scan is the 28th of March 2014 so not long to go and its a morning appointment so i have t get there early. They said they will have people on standby just in case i have and attack whilst i am in the scanner as its the last thing i need is my head to start just as they are about to scan the base of my back, its just my luck to happen but i hope it doesn’t. I will take my injections with me just in case so i will be able to stop the attack and continue the scan i can’t imagine what i will do if it turns out to be a massive attack and overpowers the injection, i think the hospital will be in for a shock.
Tuesday 11th March 2014
Again i was woken by the beast but thankfully it wasn’t until 4am so i managed to get a couple of hours extra sleep, Just lately every hour counts as i always feel so weak after i have had the attack. Even after taking the injection in order to abort the attack that even takes it out of you. Suddenly all of your energy drains, the chest tightens and your breathing becomes deep but then it stops the attack and your head slowly returns to normal bar a few sore patches from where you have been massaging like mad to get rid of the agony.
I decided to go out and get my money early today as it is my main payday from the sick and walking in the cold air instantly started of an attack. As i walked through the field behind the supermarket to get to the cash machine i could feel the pressure building on the left side of the head and all of a sudden an attack began. As i didn't want to use my injection and waste it as i don’t have many left and don't want to use them up when i may need them more later in the night or early hours i had to ride the attack out and rushed back as quickly as possible to get back in the warmth and get my head warmed up and ease the pain. The attack lasted about 20 minuets and thankfully wasn’t a big one so i recovered pretty quickly.
Its starting to get to me being woken up in the early hours all the time with attacks and always being in pain. Just once i would love to lay in till lunch time and not get out of bed and relax spending the day dong what i want , maybe even take a trip into town and do some shopping to make me feel better but even this morning i chickened out on going into town because i had an attack start and my back began to hurt. So its not looking good. i am finding it difficult to go further than 5 minuets walk away from my flat as i want to be able to get back if an attack happens and not be stuck out in the open with people watching me scream in agony and pain.
I may have to increase my Pregabilin medication and just put up with the bad side effects for a while just to reduce the number of attacks i am getting. I also need to make an appointment with the doctor as i have been having funny balance problems. I seem to loose my balance on the left side and keep bumping into things and falling over things. This is a strange this as it isn;t all the time
