Things have started to get better and are looking good for the future

Well its time to update the blog again with whats been going on. Thankfully this month its not all doom and gloom and we have some good news for once. Unfortunately its not about the clusters as they have been as bad as ever. This time of year has always been the same for the clusters and they are always worst with the cold wet weather. Mine have been murder for the last 6 weeks. Non stop attacks 2 or 3 every day with out fail. I am using my injections , oxygen and heat treatment to try and control them but its wiping me out. by the end of each day i find myself with no strength or energy and really struggle doing simple things.  All i can do for now is continue to fight and hope they calm down soon. My appointment with the Neurologist is at the start of next month so hopefully they will either increase my medication to try and help ease the attacks or they will try a new medication and ill have to start all over again and hope it works.

I've had good news with my benefits as they have seen how bad i am and thankfully have awarded me my PIP after a long wait and now I can get on with things and try and plan ahead. Its difficult to plan anything when your having cluster attacks all the time but i am hoping as they start to decrease I will be able to get out and about again and go fishing as i have been missing it like crazy. its the only thing that's been keeping me sane during all these health issues. Now March is approaching and Spring will soon be here I am looking forwards to getting back on the bank catching some lovely carp. I am just praying to god that the damaged nerve in the left side of body plays ball and doesn't cause me too many issues.

Thankfully the type of fishing i now do doesn't mean i have to sit with a rod in my hand for hours on end at the side of a water. We place the rods on alarms and can sit and relax whilst waiting for a bite. This type of angling is perfect for anyone with disability problems as you can take everything you need with you. Tend , comfortable bed, chairs pillows you name it. I even take my oxygen with me if going on a long fishing trip so i can medicate myself and take care of any cluster attacks whilst fishing. Having the Bivvy (tent) makes it a lot easier as you can just nip inside lay down and deal with it and no one is the wiser as they don't see you,. This is the main reason i ended up doing this type of fishing, being able to hide away in private whilst having an attack or having to deal with medication is perfect. You can then get on with your fishing once sorted and carry on catching loads of lovely fish. I have to admit it is so much nicer having an attack by the side of the lake doing something you love than it is having one stuck at home and stuck indoors unable to go anywhere. I just wish Spring would hurry up and get here as being stuck indoors is driving me nuts. I miss my fishing so much lately.

It is very tempting just to grab the rods and go down the lake even in this weather but i know in my heart if i do it too soon before the nerve has settled in the left side of the body i will just end up in a lot of pain and will end up not enjoying my fishing and will then not want to go in spring so i am being strict with myself this year so i don't cause any issues and I will try an get in a full season of fishing. I hope!. So far the nerve down the left side of the body has caused problems with my walking, movement when i try and turn the body or twist, issues with lifting things even light objects with the left hand and also serious pain up my left leg and left side of my lower back. Why its causing all this i don't know but i am coping with it and being careful not to aggravate things. . I have also started to get burning pain right at the bottom of my spine. This causes problems when just sitting so I have to get this checked again by the spinal clinic. Thankfully the spine issue is minimal at moment but it does worry me and i wonder if it could cause problems when i opt for the cervical nerve root block in the future. i hope its not going to be an issue and i just have to watch what i do. Its doesn't bother me when out and about or when fishing yet but i can see it causing problems in future.

So things have started to get better and are looking good for the future as long as I continue to improve and watch what i do. I am hoping things will calm down soon but if they don't I am seeing the doctor soon so should be able to get the help i need before the start of the new season. I have decided I am going to concentrate on my fishing this year and by doing so will be able to put all these health issues to the back of my mind which in turn will help me get control of it all and manage my condition so i can get on with it and try and live some sort of normal life. I know its not going to be easy and I will get a few more knock backs before i start to manage things but i am getting used to it by now. Fingers crossed things starts getting a little easier from now on........

January ended up turning into a month of hell

I have been trying to wait to do my new update to my blog as i was getting fed up with all the negative things happening to me and writing the same stuff over and over again was becoming boring and doesn't make for good reading. I was getting hopeful towards the end of last year and into the new year as the nerve in my back had calmed down a little and I was managing the condition with out too many issues. I still have problems moving around and very bad pain when i walk but i was managing to get out, Suddenly the beast decided it was time to return and the cluster attacks started. First i thought it was just a bad weekend and would soon pass but it didn't. The attacks slowly increased back up to 5 or 6 per day and i am really suffering this year.

January ended up turning into a month of hell with the attacks and i haven't yet had a day with out having to deal with the beast. A full month on non stop attacks has really wiped me out. I have no strength left in my body and i struggle daily. Even popping to the shop around the corner has become a major problem. As soon as i go out into the cold air it starts to attack my neck and end up setting off a cluster attack 100% of the time. The oxygen is a god send but i now go through a large bottle so fast its crazy., The stress with the attacks and the depression it brings on has really messed up my moods and my head is all over the place, unable to concentrate in anything. I really don't know what to do except keep fighting and pry that it will improve sometime soon.

Well to top things off today (Friday) my money hasn't gone into the bank so the social haven;t paid my benefits again so Once again i have had to ring up and find out what is going on. At first they told me its been [paid so they don't know why it hasn't gone on my account , after half hour investigations they found it has been paid late and will clear on Monday. Well eventually we got it all sorted and it will now be paid later today but what i notice is that the amount of stress has triggered my clusters Just stressing over the need to go shopping and pay bills was enough to trigger a sudden burst of attacks that are just starting to ease off now.

I woke up this morning feeling so low and fed up and then the head started at 4 am. Managed to deal with the clusters only to find that i had no money when i checked my bank and that has now really put me into a very low mood it scares me. Stress sets off a row of attacks one after each other , what a start to the day. I really don't know what to do anymore i feel lost and alone. Its bad enough that I cannot work due to my condition and that alone depresses me , then when you rely on sickness benefits to survive and even that gets messed up now and again, its no way to live a life but i make do with what i have. I do my best to keep busy and keep my mind off my illness and try and concentrate on the positive things but sometimes it just becomes too much to bare. I cannot wait until i can go fishing next, get some fresh air and take my mind off all this mess doing something i love once again.  Lets hope the nerve calms down and i am on the bank soon!.

I CAN beat this in the end and just keep pushing

Once again the cold weather puts a halt to any type of activity i try to do. The beast visits early mornings between 2 and 3 am like clockwork now and after i deal with the attack or stop it happening i find myself awake and unable to go back to sleep due to the shadows hanging during the day. You would think after all these years i would be used to it by now but i still struggle on a daily basis. I avoid going out during the day in fear of cold wind and me moving about aggravating the damaged nerve in the neck and down the back which also ends up setting off my cluster attacks.  The last 2 years i have to admit have been hell trying to deal with all the health issues i now have. Dealing with the hiatus hernia, stomach acid and re-flux, food trapping and chest pains every day alone takes it out of you. Constant neck pain and sharp shooting pains down the left side of the body, down the back and leg, across the chest and shoulder constantly  weakens you and you find by the end of the day you got no strength and then having to deal with the cluster attacks on a daily basis is enough to finish you off.  I have to admit i am struggling.

When this first started years ago i promised myself i would do anything i could to beat this thing and get these attacks under control. When the clusters turned chronic around 8 years ago i actually thought i was going to die and there was no hope for me yet here i am all these years on still fighting the same fight as when i started. Since being diagnosed I have been on one mad journey with my heath with all sorts going on not to mention the hell it played with my mental health and i am still fighting. Medication made me worst and then slightly better and finally i started to get control of the cluster attacks and by using oxygen, injections, medication and heat treatment i am able to abort more attacks than i suffer. So things were looking up for me for quite some time. I was managing to get out a couple of days every couple of months over the summer months fishing with the club and was enjoying it. I write my blogs and try and keep myself busy. Then 2 years ago something happened to my neck that even the specialists are a little confused, They told me the nerves have been turned up from level one sensitivity to level 10 and can't be turned down.

O k i thought another problem i have to learn to ;live with and at first it wasn't too bad. Occasional dead leg and arm, occasional shooting pains numbness and pins and needles but nothing that would worry me too much. Then suddenly i started to get the freezing experiences over my head and down my arm and back like you are suddenly being frozen. along with some weird and wonderful light shows in my vision. I was told its the nerve and not to worry but that didn't make it any easier.. Then the hernia decides to play up and give me chest pains , along with numbness of the arm meant the doctors worried and sent me in for my heart, where i find out i have swelling around my heart from the hernia and my injections, that are the ONLY thing that can abort an attack, cause narrowing of the arteries so i have to be monitored from now on. Now the nerve pain has decided to spread down the left on my body. My entire left arm is contently having problems along with my left leg. My left foot keeps going dead and i get some mad crazy pains up and down the leg. Also the pain has spread across my lower back with burning sensation on the very bottom of my spine and sharp pain about 2 cm in size just to the right of my spine. All this combined with the rest of the issues and the clusters is making for one miserable life at the moment.

The latest problem is pain i am getting across my back just under my left shoulder blade. This pain comes and goes but when it does come it really wipes me out in seconds, causes me to sweat suddenly and a feeling like i am about to pass out. Then once its gone it leaves a really sore tender patch  for a couple of hours. I reported it again to the doctor as this pain has been now on and off for the last 3 years but lately i am finding in bed it is waking me up. The doctor has done blood tests and nothing has flagged up so we will have to see whats next. I am really starting to find it hard to keep my head with everything going on at the moment. I am also going through my DLA to PIP changeover which is causing me even more stress as they tried to get me down to the office and despite me explaining my condition they still made me go down only for me to end up having a massive cluster attack 20 mins into the review so they had to stop and send me home. Now i am waiting for them to come and do my home review. Still haven't heard from them for a whole week., they were on my case when they wanted me to come down texting me every couple of days, crazy. 

Well this is now the second year it has put a stop to my fishing and i am having more problems from the nerve than i expected so i think its going to be time to get referred back to the spinal clinic and opt in for the cervical nerve root block despite the risks and just cross those bridges when i come to them. Surely i wont be in any more pain than i already suffer, i don't think the body can take any more. There isn't much more i can do in reality. I am doing what i can to manage the pain and conditions. I am being strict with my medication making sure i take what i should when i should and i am following all instructions from the doctors and specialists. So why is it i feel lost? Why does it feel hopeless? All i can do is put my head down and get on with it. Keep the though that I CAN beat this in the end and just keep pushing myself until i can push no more.   

The Beast is back...... here comes the cold wet weather!

Once again as the colder and wetter moths arrive and the temperatures start dropping the beast returns and bot what a come back its been. It was bad enough the damaged nerves in the neck and back causing so much pain it put a stop to my fishing early once again but now along come the beast. From managing my condition with between 1 and 3 tacks p[er day 50% of the week now all of a sudden they jump back up to 4 or 5 when bad and most days at least 1 or 2. I am finding the pain in the back and neck increasing during each attack and its aggravating the clusters resulting in double the amount of attacks i should normally get. 

Yesterday i had an attack that i will never forget, not only did i think i was going to die which normally happens during an attack but this was different. A strange feeling cam over my entire body towards the end of the attack. i have never felt energy drain like it. It feel like every thing slowed my breathing , my movements and my heart rate as if i was suddenly placed on slow mo mode but the rest of the world around me was still going fast.  The pain was so intense i couldn't even think and the amount of sweat pouring off my body was just unreal. I have had some bad cluster attacks before but this one shook me up. Iy must have been the 4th Attack of the day. I had aborted 2 with Oxygen and rode out the 3rd so i didn't have to use my injections and then on the 4th i was glad i did use the injection as i don't think i would have made it through with out. 

Now i have been suffering this condition for years and my main stress outlet was fishing. Its something i love to do so much and relax when i am laying calm inside the bivvy waiting for fish to bite. Peace and quiet and not a worry in the world. it helps me to forget about the clusters and my health problems and just concentrate on something i enjoy. Now the problem i have is over the last 4 or 5 years the nerve pain and damage has been steadily getting worst.  This has meant and rapid decrease in the amount of times i have  managed to get out fishing and i am finding it is starting to have an effect on my mental health. Its bad enough dealing wit all these health problems at the same time let alone the depression and anxiety it brings with it but now i am slowly loosing the only outlet other than this blog i have to help me deal with it all. 

I am starting to think i will have n other choice but to take the option of the cervical nerve root block which could result in loosing complete mobility in the left side or feeling and that would then make mt fishing very difficult. I know there is help out there for disabled anglers who want to continue the sport but when you are fighting to keep your mobility and independence it doesn't really make you feel any better. I will continue to fight this for as long as i possible can but things are not looking good. All i can do for now is take each day as it comes and hope to god this winter isn't going to be as bad as i fear it will be with the colder weather approaching. I am praying i manage to get out at ;least a couple more times before the worst of winter is here, and that is only if the back and nerve play ball. So far its just not behaving and causing me so many problems it makes you want to scream. All i can do is wait and see what tomorrow brings.........

I thought i was managing and coping well..... hmmmm?

Once again as summer starts to come to an end and just as i think things are looking up for me  my life is turned upside down. The cluster attacks every morning between 2 and 3 am have started waking me consistently now and for the last month i can'y remember a day i haven't been woken up by them. I am having them steadily through the day but still manage to keep them under control using the Oxygen, Injections and Pregabilin tablets. They seem to have settled averaging between 2 and 4 attack per day depending how bad i feel. I have noticed that its the nerve pain in the neck that are bringing the attacks on and I don't think its the clusters just getting worst again, but i am no expert and my neurologists explained they can come in episodes so maybe that's whats going on. All i know is i have to continue to manage them the best i can but lately its been having an effect on my mental health and I am starting to question what i am doing and why i am doing it. 

Dealing with bad ref flux and acid problems from the hernia with food trapping due to the swelling near to my heart.  Not to mention the severe chest pains it keeps giving me on a daily basis making me feel like i am going to have a heart attack. I have lost count how many times they rushed me into hospital for this. Then the nerves in the neck sending shooting pains down the left of my back, down my left arm and across my left chest really makes it double scary. Each day i find something new with the left side of my body, one day i struggle to walk because the left leg wont seem to work correctly with patches of numbness and pain all over the left side of my body. Some days i wake up before the left side of mu body has even begun to wake up from a cluster. All of a sudden i try and move and realise i am completely dead on the left side. Scared me a couple of times thinking i have had a stroke or something but then i feel like a tingling and running water sensation over the left side of my body and life returns to it slowly. I spend every day dealing with pain in both side of my neck, not sure whats that's from but was told its referred pain from the left side and that's why the right side hurts plus i have a stupid fatty lump in my lower left back that keeps making is sore right next to my spine. These are just the daily issues i have to deal with and i really thought i was managing well considering the amount of problems i was having.

Now i have found a new problem, around 2 cm long on the right side of my spine. its a painful spot between the spine and the ligament or muscle that runs down the side of it.  I only notice it when i don't have the other nerve pain to contend with and it comes very rarely. The trouble is when it does come i find i also get pain in my tail area and across both left and right bum cheeks.Then i try and walk and its like both my legs are on fire.I have tried relaxing but when ui feel my legs the muscles are in a constant state of being tensed up for no reason. I only had it once before a couple of years back where the doctor rushed me to check for clots in the legs but nothing showed up and we couldn't explain it, this is the first time something has actually caused it and now its seems to be causing it more and more regular. If i don't have enough troubles as it is all i need now is something else to add to the mix.i am starting to wonder iif its not spreading through the nerves , if it can do that sort of thing,.

Now to top everything else off i now have to go through the DLA to PIP change over. Now the last thing i need is my mental health to start playing up now whilst this is going on. I tend to panic and hide away and could end up messing it all up. The first thing i did was ring the doctors for help only to be told they cant see me for a month, so i thought i know i ring my share care nurse for help and advice to find out shes off sick and the person that's supposed to be covering me isn't in today. So all the people i really need to talk to i can't get hold off, its crazy. I just don't know what i am going to do. I start the day in tears and end the day just as bad. I have so much going on in my head i cant seem to focus. Its been so bad i cant even convince myself to go fishing. Even stupid thing like running out of milk seems like its the end of the world! Its just milk ffs......

Well whilst i try and get a grip on reality once more I am just praying things start to improves soon as this is the lowest i have been for years. I know i am the only one who can pull me out of this rut but sometimes you need a bit of help, the trouble is many people believe if you don't look ill then there is nothing wrong, I am just trying to get back to the point i was at where i was able to manage these conditions each day and just get on with things but once again they have taken over my life, all because one little thing set it all off, its driving me insane. 

Sleepless Nights, Aches and Pains but still feeling positive...

Its seems like every time i feel i am getting to grips with the problems CH brings I always end up getting knocked back down with something else happening with my health. This time the nerve in the left side of the neck has decided to play up and also my right shoulder. It feels like i have a frozen shoulder but with out the pain at the front and only on the top of the shoulder and the back are in pain. A constant ache like toothache is whats driving me insane at the moment and causing me sleepless nights. i have tried everything from gels to heat and cold treatment to try and ease the pain and the ache but it just doesn't seem to stop. The constant and endless ache is driving me mad.

I am grateful that the CH is being good at the moment and this year i have seen a big improvement in the decrease of attacks especially through the summer period. Using the Pregabalin as a pain killer rather than a  constant treatment seems to help manage the condition a  lot better and i find i can now deal with the occasional attack with just oxygen and no need for the injections unless i am out and about. If only it would stay like this but i know through experience as winter comes and the cold weather starts to return so will the cluster attacks. I am just going to make the most of the attack free days i am getting and hope that by managing the condition this way will mean a huge decrease in attacks through the winter. If it stays like this through the winter as well then i have cracked it.

The trouble with CH is it can come in bouts so the pain free period i am having could just be one of the cycles ends and i could get another cycle start at any time. I am hoping this isn't the case and that the current level of medication is enough to now continuously manage the condition with out having to suffer so many attacks. If this is the case then it will be a major breakthrough in my treatment and the future will start to look promising. For now all i can do is prepare for the worst and pray for the best and hope it continues along its current path. I just wish it was a similar story to the damaged nerves in the neck and back but unfortunately its not the case as they having been playing up something terrible this year. 

I have been trying to ignore the pains and problems and continue to get out and go fishing but its been really hard especially when the pain level is so high from the nerve damage.  I haven't managed to get out anywhere near as much as i planned but despite the problems i have still managed to have some good fishing trips. I am planning more next month and will try and make up for trips i have lost out on. I also have a competition i am entering on a local venue which should be great fun. I am just praying the nerves behave and don't give me too much pain. 

There isn't really much more i can do about the nerve pain as i don't want to take strong pain killers as they just end up making you ill and feeling worst so for now i a using gentle exercise and heat treatment which seems to help a long with stretching the nerve to loosen it. I am also using an anti inflammatory gel to help with any swelling around the nerve and area of pain which seems to help and ease the level of the pain during the day. 

Well for now things are good and I am managing my condition fairly well despite the sleepless nights due to the feeling of a frozen shoulder. Am just hoping this continues to slowly improve now and hopefully I can get it under control. 

The occasional cluster attack but my spirits are good.

I sometimes dread having to sit down and write my online blog about the CH as it means i have to think about all the crap i have been through over the last month or so. I also think that i end up repeating myself over and over again when it comes to the illness. Although the attacks are low and at the moment staying away for longer periods than before, when i do get the attack's they come in bouts of several at a time and seem to be stronger than before. I have also found the attacks are now effecting the damaged nerves in the left side of my body. On top of all this i have been getting bad chest pains from both wind pushing up on the hiatus hernia but also from the damaged nerve in the neck. Put these symptoms together and its like a fake heart attack every couple of hours and believe me when i say it scares the life out of you even though you know what it is. 

I ended up back in hospital a few weeks back because of the chest pain and as soon as the saw the heart was fine off home you go even though you are still having the pain. Its not life threatening , go see the doctor. i can understand that but its the doctor that send you to hospital in the first place as they couldn't deal with it. Anyway, i ended up with a fungal infection in the mouth and throat again.oral thrush makes you feels so ill all the time and tastes disgusting. i have managed now to shift most of that but still getting the occasional chest pain and still having pain from the hernia. If it doesn't calm down by next Monday i will have to go doctors again just to make sure as i am hoping to get out and do some fishing Tuesday onward, the last thing i need is to fall ill when fishing. The fresh air will do me the world of good as being shut indoors all the time doesn't help especially with your mental health. 

Its seems to me i get the same problems at the same time every year. just before the fishing season starts in June i end up having to battle infections or illnesses just weeks before the fishing kicks off. I am sure the fungal infections are linked to the hernia and the weather. As it changes and warmer weather comes i always seem to get some kind of fungal infection from the hernia. It seems like the hernia messes up the chemical balances in the body and of course a lot more acid in the stomach as i get terrible re-flux all the time. Another thing that seems to happen as the warmer weather changes is the pain in the lower back and down my legs. When i start walking its like the energy and strength drains out of your legs as if you have just run a marathon and every step aches like hell. Well if it follows the usual patter its shouldn't last for long but i need to get it checked as its happening a lot more regular now and I haven't a clue what causes it.  

So other than fake heart attacks, chest pains, severe fatigue,  fungal infections and the occasional cluster attack my spirits are good and I am looking forwards to the new fishing season about to start. I am just praying i get these issues dealt with in time so i can enjoy some quality time on the bank this year and catch some stunning specimen fish.

Just take each day as it comes and deal with it.....