Another year of hell on earth , pain and clusters.

Well I thought it was about time I updated my personal health blog and what's been going on with regards to the clusters and the damaged nerve.  It's been a while since my last post and nothing seems to be getting better in fact it always seems like I take two steps forward and one step back all the time and I struggle getting to where I want my health to be.

 

Once again I have woken up with the entire left side if my body paralysed and I don't mean dead and still asleep and not quite woken yet like sleep apnoea. I am talking full on hopping about the flat in panic for over 20 minuets of the left side of the body being completely dead. I could not move my arms my legs , fingers or toes for the entire time no matter how hard I tried to concentrate. It is one of the scariest things I have ever had to endure and when it does come back to life again it's a really strange feeling like someone has walked up to you and thrown water over the left side of you and you can feel it running down the body and life returns to the limbs.

 

Again I had sharp pain in the base of my neck and the bottom of my spine when everything started to work again. When I examed myself, during the stroke like episode, I noticed I lost feeling half way down my neck and the numbness on the chest was half away across the left brest. Tha same was with the feeling down the side and groin. I have to say I never want to stay paralysed like that it's a horrible thing to experience and lifting your limb when it's dead weight is a shock. You don't realise how heavy a dead limb is.

I have been having big problems with my neck of late and the pain I keep getting in the neck is even over powering the high level of medication I am on and is really worrying me. The base of my spine has now joined in full time with no breaks from the pain just level drops and then gets strong again when I move around and try and do things. I am really starting to worry as to what's on earth is going on I have never felt pains like these before and they are really sharp stinging type pain. If it's all down to a damaged nerve as the spinal specialists did once suggest then it's starting to concern me as to what nerve it is I have damaged as when it's bad it's paralysing me ..... That's not a good thing to be happening as one day I could wake up and it may not come back. I really do fear that day! 

With the high level of medication I am on just to be able to move about and try and get on with things are making me live life in a constant haze. I don't feel like I am completely there and each day seems like a dream. It's a horrible feeling made worse with lack of sleep due to the neck pain constantly waking me up. 

I am determined to get back out fishing again this year as it's been 3 years since I had a proper fishing session on the bank. The medication will allow me to do this but I will have to have someone with me at all times just in case I have a cluster and also to be on the safe side with the level of medication I am on. My balance isn't the best on this medication so slopy banks may prove a challange. Thankfully my step father has agreed to come with me in sessions to give me a hand with all the gear and help when on the bank fishing and to keep and eye on me.

 

As far as treatment goes there isn't much else they can try for my clusters unless it gets completely out of control and that could mean a brain operation and I don't fancy that at all. Dr. Pickersgill , my neurologist is keeping an eye on me twice a year and the GP keeps check on my medication every 6 weeks so I am slowly settling into a new routine. I have had the MRI on my neck so have to book my follow up appointment in a couple of weeks so will hopefully get some answers as to what's going on with the neck and spine. I have started counselling to help me deal with the constant pain and depression that comes with the clusters and teaching me tricks to help me deal with things much better so there is some light at the end of a long dark tunnel it's just going to be a long painful journey. 

For now all I can do is hang on in there and hope for the best taking each day as it comes. It's really difficult trying to keep a positive look on things all the time and not giving into the depression. I feel cut off from the world more now than ever before so there's a battle going in in my head at the moment , one I really do hope I win. 

 

When your at your lowest , the only direction to go is Up!

Once again you find me battling with the beast on a daily basis, yes the clusters are back and with vengeance. After having my last nerve block at the start of the year my clusters have been non stop daily and no time off. Every morning I get woken between 2 & 4 am which I call "cluster o'clock" and the pain level has just been brutal this year. I don't care how many years someone suffers with this condition you will never get used to the pain or ever find a way of dealing with it other than through medication or treatment. I have tried other ways of trying to manage the pain from acupuncture to meditation and the only thing I find that reduces the amount of attacks I get in the day is when I am out fishing and the body relaxed. Unfortunately due to nerve damage In the neck and spine I have had to take time out but am about to restart my journey and get back on the bank so I am hoping it will help to reduce the daily attacks. 

Well I started the summer great with a bit if a cancer scare due to a testicle suddenly enlarging and doctors confused so rushed me for urgent scans. Turn out a bit of good news bad news scenario , the good being it's not cancer . The bad is they found a cyst at the end of my tube and the tube has enlarged along with the testicle so could be possibly causing a blockage . This will mean another trip to hospital and an operation to remove the cyst I think as the testicle is still growing, slowly, but growing. My luck when it comes to my health is just awful and when ever I think I am finally winning I get knocked back down. Well one things is for sure I can't get any lower at the moment so there is only one way to go and that's up. Let's hope I can jump on the ladder and start climbing as it's really starting to do my head in and I just need a break. The body feels so weak lately after having to deal with so many attacks. I know they say clusters can't kill you but I am sure the side effects and after effect of a cluster can if you don't look after yourself. I have never felt so beaten up in my life where the entire body is suffering. I am hoping this will soon calm again once I have a grip of the attacks and get them under control again, if they ever were. 

Not much else to report at the moment as I am still waiting in treatment and scans for my neck and spine and due to COVID I can't see it happening any time soon. All we can do it grit our teeth, grin and bare it. The neck is worst then ever before and effecting my entire upper body and the spine seems to come and go making it difficult to walk some days. The pain level is the worst thing as being nerve pain it's always sharp and strong making everything an effort. Simply walking to a friend's who lives 5 minuets away is like doing a marathon. The pain level from the spine is shocking , it's so intense you find it hard to catch your breath . Thank God it's not all the time and only flares up now and again. I am sure this, what ever it is, is what causes the weakness when I walk and also the pain when I try and push myself to far. Let's hope it's not too much longer to wait for the scans. 

Two Steps Forward , One, Step Back

There are times when i actually think i am getting somewhere with this illness and there are times where i just want to scream and give up. It takes so much strength to keep pulling yourself out of the depression that comes along with chronic cluster headaches and the constant battles with the pain on a daily basis. Being chronic and having daily attacks feels like you are being constantly tortured and you have no control over the torture and when it happens.

I have had such bad luck when it comes to preventative medications it really is starting to become depressing as you dont know what else you can try. My Neurologist is brilliant and is willing to try anything i like. We have been doing GONB (nerve blocks) every 3 month as it seems to give me some reliefe from the daily torture but it causes issues itself with the damage i have in the left of the neck. I am still waiting for scans and referals so we can find out what is going on in the neck as it causes so many issues now its crazy. Effecting my arms , my back, my lower spine, my legs and my chest, the problem in the neck is become such an issue i struggle with it daily and its effecting everything I do. 

I have woken up several time paralysed down the left side of my body , now when i say paralysed i mean it , not numb, not dead but actually could not tell the brain to move my arm or leg no matter how hard i concentrated. Then only to have it suddenly come back to life after 10-20 minuets later with a feeling like somone is pouring cold water down my left side of my body. Its the strangest thing ever but its really starting to worry my as i fear one day i will wake up like it and its not going to come back to life , I could not live like that , not with everything else i have going on with my health. 

I have such bad luck when it comes to my health its crazy and becoming  an issue. Once again, as soon as i thought I was wining, something else comes along to throw a spanner in the works. Now another infection in my groin making walking very painful as it feels as though someone has kicked me clean in my family jewels. Another course of antibiotics making me feel rough and weak all the time. I am praying this infection goes at the end of the 2 week course as if it doesn't then the problem could be a lot worst than just an infection and something I really don't want to consider. 

I am slowly trying to get myself back out on the bank fishing again but having issues moving, walking and lifting things is making life hard and miserable. I used my fishing as a way to control my mental health and deal with depression but not having this outlet for the last 3 years has really started to take its toll and effect me badly. I try and keep busy using social media and friends and members of the fishing club send In thier catch reports to me so I can put them up on the social media feed and this keeps me focused on fishing but it's killing me not being able to get out myself. 

Well this year I decided no matter how much pain I am in or how bad I feel I will make the effort to get back out on the bank. I don't care if I have to employ someone to do all the hard work, lifting and setting up for me to save me struggling and suffering in pain. The way I see it I could be sat at home in agony or I could be out on the bank in agony but at least I would be out in the fresh air doing something I love rather than sat at home dwelling on my situation feeling bad and sorry for my self. Its only US that can help ourselves when we find ourselves in such a situation. I have learnt you cant really rely on anyone other than yourself when things turn bad and when you do try and rely on people and they let you down it hurts so it's best to get on with things and try and deal with each issue one by one as it happens.

I am still waiting for the NHS to catch up with thier services after the covid out breaks and lockdown as there are big waiting lists for all treatments. I am waiting for scans on my neck, scans on my back and lower spine and also been referred for trauma counselling regarding my mental health but whilst I am waiting things are just getting worst and worst instead of having the right treatment to get better. It's got to a point where I don't know what do do as everything I try just makes things worst. Let's hope they get things sorted soon and I don't have to wait too much longer. 

Cluster Headache Poster

 

One Hell of a Start to a New Year

 Once again I wish that I could report better news regarding the covid 19 virus but unfortunately the world is still in one hell of a mess with lockdowns and restrictions and countries struggling to get infections under control. With all this going on its very difficult to get help with medical issues and problems and any non-life threatening treatment is out on the back burner due to staff shortages and high infections stretching the NHS beyond breaking point. The whole situation is really one big mess.

I myself have been through hell on earth with regards to my health. Not only did the clusters return in force due to having the vaccinations but I also ended up catching covid again which has left fatigue issues like you wouldn't believe. On top of this my neck and spine have become so painful its difficult moving around. I did get a nerve block down when i last saw my Neurologist which helped for around 3 -4 weeks but then everything returned worst than before. On top of all this I have ended up with several infections, the last of which has really knocked me for 6 and am still suffering with it now, A huge throat infection and tonsil infection that ended up with me spewing up blood every hour from 3 am till midnight and being rushed into hospital.

After a day on IV drips and medication to stop the sickness they allowed me to go home with antibiotics and other meds to continue fighting the virus at home and I can tell you this is the worst thing I have ever experienced. Sore mouth , difficulty speaking and constant feeling of weakness really gets to you after a couple of days. I am really hoping the medications gets rid of it soon but still early days . I do feel a little better than I did at the start but not much. I have tried to get on with things but just cant as I am constantly sleepy and drained. 

One things for sure, I have the worst luck when I comes to my health and if one things isn't causing me a problem I would think I was broken. Its become the norm to be in pain constantly or having to battle symptoms of some sort. I cant actually remember when it was the last time I experienced a day with now pain at all. I am praying that things starts to calm down with this crazy virus and treatments within the NHS start to pic up again soon as I am still waiting on the spinal clinic and spinal specialist plus 2 urgent MRI scans on my spine and neck to find out wats going on and why some days I wake up paralyzed down my left side of my body only to have feeling return several hours later.

There's not really much more to report on at the moment and I will write my next update as soon as I get results from these scans to see what's going on and what if anything can be done to rectify the problem. Hopefully i can get this infection shifted soon and not end up back in hospital as that's the last place anyone wants to be during a pandemic. What a way to start the Year! Happy New Years Guys ......

The worst month of my life, heaven has a new angel.

This is probably one of the hardest blog updates I have ever had to write. As of Monday the 4th of October my mother passed away whilst still in hospital during a viral infection that resulted in pneumonia and her passing in her sleep. It has rocked my world and a vale of darkness has descended over me. No matter how hard I try and deal with it it just over powers my emotions and cripples me.

My mother was such a strong inspiration to me, not only did she care for me, no matter what I did wrong and she was always the one to point me in the right direction again, but also cared for my health. She battled and beat cancer, she even survived double kidney failure and even beat of the covid infection the first time around. 

Unfortunately the viral infection had caused so much damage to the body that it was just slowly giving up and after her leg breaking from just standing up, bones had become brittle from the Infrction, it seemed like it was just one thing to much for her and she eventually lost the battle.

My heart has never felt so much pain in my entire life, I didn't feel this bad when my father passed and I used to think I was closer to my dad than my mother but boy was I so wrong. Its really hit me hard and I am struggling daily, battling back the tears and sadness non stop, all day long. 

It was my mother who started me in my fishing journey all those years ago when I was struggling with my mental health and clusters had began. She would make sure we would go out and fish together at the beginning until she became to weak to come on the trips. It helped me to deal with my demons and focus on myself and how to manage my condition. I am going to be lost with out her positive input and constant pushing me to be a better person.

You don't realise how presious someone is to you until they are gone. It's going to be a long hard road to get over this if I ever will, all I know is the pain is strong and will be here for some time to come. I know as each day passes you learn to live with it and accept it but try telling yourself that when you are hurting.

I get mad reading all the BS on social media about the covid virus and people not believing its real or that somehow gouverments are creating the issue but all I can really see if 100's of thousands of idiots. The virus is real, I've witnessed it, had it and have now lost the person most presious to me from the consequences of the viral infection. Anyone still thinking it's a joke, a conspiracy or a way of control really need to bang thier heads against a brick wall really hard. If that fails get a mate to hit them over the head with a sledgehammer as they don't have brains to damage anyway. Enough is enough. Get a grip on reality the lot of you and let the ones who have lost loved ones morn in peace instead of having your BS shoved down thier throats on a daily basis.

Well I've said what I wanted, it doesn't make any difference to the amount of heart break I am feeling right now, all I know is heaven has a very special angel joining the ranks and I pray I make her proud. 

Miss you and love you forever mum! 

Hope blown away as clusters return

Once again I am left waiting for things to change before writing my blog. I hoped that after a couple of years dealing with this pandemic we would actually have gotten to grips with it and finally got things back to normal. The truth is we are far from it. People are fed up with hearing about illness and issues relating to covid and even I am getting fed up with it all.

I didn't really want to write a blog complaining about the hard times we are all going through and the difficulties we are all facing getting treatment for on going issues other than covid related. It's been a crazy experience and one I'll never forget.

I actually thought I was getting somewhere with my clusters and damaged nerves but reality is I just seemed to have a break. I was excited last year as my attacks reduced right down and the nerve seemed to ease and I found I could get out and about more and move around better but this was short lived. As soon as winter hit and the cold weather started the pain returned and so did the clusters.

It's really obvious that the nerves are aggravating the clusters and when in full cluster attack the nerves actually light up and join in so not only do I have to deal with the cluster attack but also severe pain down the left back, arm and leg.

Due to having so many health issues since the clusters began I was told to have the vaccinations to protect me from the covid infection, after the first I was a bit rough and the second made me lethargic for a couple of weeks but I didn't really have problems. What I did notice is suddenly my clusters began and they would not stop. The attacks seemed completely out of whack with my body and the times I would normally get a cluster were clear and the attacks would come out of the blue with no pre warning signs.

After suffering for all these years I can vertually predict some attacks and know when during the day they are likely to come, especially when we have bad weather. It's as if I can feel the high and low pressure changes  have effect on my head.

Since having the second jam this was all out if sync for around 2 months then seemed the settle back into my regular cycle with the new addition of stabbing pains in the right side of my head.

Well I have fought through the attacks and although this year has been a living hell I still feel I am managing to control them and keep them from getting unbearable again but at this rate I don't  know for how long i am hoping things will calm back down again as seasons change.

The back issue and the bottom of my spine has become a real problem now and despite it easing last year it has just become worst and feels like it's slowly spreading. I never knew the spine could give you so much pain it's really unbearable and makes you vomit the pain level is so high. At first I thought I had done something to my back and hoped that after rest it would ease and go away. This isn't the case and the problem comes and goes. It seems to last several days then I get a break with just very mild soreness on the bottom of my spine and then it returns. It seems to be worst during wet cold weather so at first I thought it could be arthritis but surely you shouldn't get such a high level of pain. Until they scan it I just haven't a clue what's happening so I just gave to continue with the battle.

The neck has now spread to both sides and the pain is no longer just in the side of my neck but also in the center of the back of my head where the spine meets the skull. No matter what I do every movement causes different levels of pain and it even effects my shoulders and arms. 

I was told it was damaged nerves in the neck on the left side but something tells me they got it wrong. I now have pain down both sides of the neck, down the upper part of my spine to the middle of my shoulder blades, pulling down on the back of my head causing stabbing pains in right side of the skull. When I move my  head all I can hear is popping, grinding and crunching to add to the pain it gives off. The worst bit about the neck issue is it effects my arms and hands and I get problems and pain with the fore finger and thumb on both hands with swelling coming up in the back of the left hand.

It's crazy what's going on at the moment and nothing I can do except wait for appointments that could take a while to appear due to the issues of covid and the stress it's putting in the NHS. I have to admit tho I do feel as if I have been swept under the table and forgotten about. It's now coming up almost 2 years since I reported the new problems and other than it getting worst nothing else has happened and I am still sat waiting, fighting pain, fighting clusters.

I have tried staying positive, keep trying to exercise the problem areas and get on with things but the pain just becomes too much to bare in the end. I even tried to get back out fishing again this year, put on a brave face and get out in the fresh air wich was enjoyable to begin with but felt like torture buy the end of it. I need to get something sorted as I don't want to loose my fishing it's the only thing that keeps me sane. 

How much more can one person take...... 

The Beast Returns

Why is it that every time I think I am getting somewhere with this illness or have things under control suddenly I take a turn for the worst. Morning wake up calls at 2 & 3am are the norm when the be beast decides its your turn to suffer once again.

Again I have to battle the painfull attacks that no longer only effect the left side of my head and neck but now spread right down the left side of my body due to the nerves lighting up at the sane time I get an attack

It always seems to be the change of seasons that give me the worst trouble and especially if we have a cold start to the day or a sudden drop in temperature. I do try to just get on with stuff but it's literally impossible when you are in full cluster attack. You cant feed yourself and food is deffinetly the last thing on your mind,you can't even look after yourself properly, come to think of it you basically can't do anything. 

Well the nerve down the left neck and Back is giving me so much trouble and pain I really don't know what to do. I struggle to do things like cleaning or washing and anything where I need to be on my feet for any period of time. I used to go fishing to help with mymental health as its the only thing I can do where I can take my oxygen and set up a tent (bivvy) with a bed in so if I have an attack I can take my Injection and go and lay down for a while and let it pass, when recovered I would return to my fishing. I haven't been able to do this for almost 2 years now and it's really starting to take its toll on me.

This covid 19 is turning everything upside down, stuck indoors all the time is no different to the way I have been living for the past 20+ years and really doesn't bother me. It makes me laugh watching people complain they have had thier freedom taken away from them. The only time I go out is for essentials such as shopping or medication collection, doctor appointments and treatment and the rare occasion where I can get someone to come fishing with me. Since the virus started I haven't been able to do much and find I am struggling once again with the mental health side of my illness. Fighting extreme lows and bad feelings seems to be a daily battle just lately so I am praying we get some hope soon and things can get back to some sort of normality but for some reason I have a bad feeling about what's coming. I am not sure if it's just my mental health making me feel this way or that I can sense trouble on its way.

I have to admit this last year has been the hardest I have had to endure as I am finding it very difficult to get help when I need it and trying to get hold of doctors is almost impossible as you get fobbed off with locums and can't seem to get anywhere with them as they don't want to risk catching the virus. 

It really makes me laugh as you see on the news daily people saying how bad mental health is being effected during this out break and thst we should seek help if we have issues but you try and get that help, it's nai on impossible.

Well I am going to try and stay positive despite all the pain and issues with my feelings and continue to prepare myself for a couple  fishing trips in the up and coming season providing I am not in too much pain to go.

Let's hope we start getting control of this virus soon as and people start listening to the gouverment and rules so we can get back to a normal life. I have a feeling it's not going to happen until everyone has had thier vaccinations. Let's hope it's soon as i don't know how much our mental health will be able to cope with. 

The Weather brings the pain again.

Once again I am woken at 2am by these crazy attacks. They really are annoying especially when you wake up, open your eyes and wonder what the hell?? You don't feel tiered you can't feel any pain and you don't need the toilet so you sit for a few seconds in a state of confusion and then suddenly, as if someone has walked in and shoved a spike right through your left eye, pain shoots out from the left eye and over the top of your head straight into your neck at the back. The cluster begins, now it a battle to keep my composure and concentrate on what needs to be done next. I make my way to the oxygen and get the mask whilst turning it on full blast. Reach for my injectjon and sit rocking in pain, head in hands with injection at ready praying the oxygen will be enough to abort the attack.

Usually the oxygen is enough and withing 10-15 minutes you feel the pain slowly ease and the pressure and sharpness in and behind the eye stops. There are occasions where the attack is so bad and the pain level is so high that the oxygen doesn't ease it so you have to take an imigran injection. This usually dies the trick but can leave you feeling drained and exhausted for a couple of hours after taking the medication. Then there are the ones that no matter what you try it doesn't help and you end up having to ride the pain for a couple of hours and at the end if it your begging for help or someone to put you out of your missery.

Cluster headaches, why they call them headache I don't know, it doesn't give the condition the recognition it rightly deserves. This condition destroys you. You can't think you can't talk to people, you can't even live your life when in full cluster. The pain levels can become so high I end up passing out and surely that isn't a good sign. I continue to battle on despite the constant attacks, I keep telling myself the pain will end, it will stop. Its hard to believe when your in so much agony.

It looks like the weather has brought them on bad again. When ever we start getting season changes I end up suffering attacks. I am convinced it has something to do with high pressure and low pressure weather but in what way I haven't a clue, it just seems its more than coincidental. 

The nerve down the back and now the bottom of the spine has also decided to join in. If it's not one thing it's another. It's getting so bad I am struggling to walk places as after a short period of time the pain in the bottom of the spine becomes so strong you have to take the weight off your legs. This along with burning shins and severe muscle pain makes it a real problem walking the shortest of distances. When the specialists told me it will get worst over time I wasn't expecting it to happen this quick. 

The neck causes the biggest problem as it aggravates the clusters, causes referred pain down my back, arms and even legs plus I can hardly move my neck with out causing myself a lot of pain. When I do move it all I can hear in my ears is grinding, crunching and popping so there is something going on with the disks but until I can get the MRI scan I need when covid calms down I am going to be suffering not knowing what's causing the neck to be so bad. 

Well bit of goid news is the virus infection rates have started falling and hopefully they will restart some of the NHS services. I can see it happen quickly as mist of the NHS staff are worn out but it's a step in the right direction and we have some hope. 

it's starting to become hell on earth.

Well I was actually going to leave updating my blog until the virus was under control or gone but it doesn't look like this virus is going away any time soon. Already more than a year of lockdowns and restrictions have taken its toll on everyone, including myself. I suffer from mental illness anyway and have done since I was young but I have always felt that I had it sussed and under control as I entered my adult years. Of course I have had bad times along the way as that's what mental health does but usually I am able to pull myself out of these low periods but I have been struggling because of this crazy lockdown. It makes you feel like you are shut off from everyone and any help. I have never felt so alone in my life.

The clusters are back as they normally are this time if year and having to deal with such pain when you are feeling low is just crazy. People only ever see the happy side of me, a guy who helps others and always seems posative yet deep inside I am screaming out in pain. I have always tried to put on a brave face and take each day as it comes but lately I am feeling lost. I feel alone and with no hope. 

As I write this I have tears pouring down my cheeks as I struggle to understand the feelings I am getting and the difficulty in thinking straight is becoming worst.  I pray these feeling will pass but I seem to have lost all hope.

It's not helping that the damaged nerve in my left neck and back is causing me so many problems I can barely walk to the shops with out being in agonising pain. I try not to show it but it gets harder each day. I am slowly loosing my mobility and it scares me.

I have always been a person to put others first and always try and help s friend in need. I think this is what has triggered a bad feeling as I helped out close friends struggling during the lockdown, some even loosing thier jobs and having to jump on benefits others even loosing thier benefits due to the changeover to universal credit Nd have to go penny less for 5 to 6 weeks. I'm not one to see someone go with out despite not having much myself. I helped these people but do you think they paid back what they borrowed? No, they forget or pretend to or avoid bringing up the subject. When I then ask for it I am made to feel as though I was in the wrong for helping them and now I'm in the same situation they don't care.

It has made me feel so low I just don't know what to do. 

What makes it worst is I am not one for beggin or borrowing so now they have put me in this situation I have no way out all I can do is ride it. I don't like asking for help myself, maybe that's why I try and help others so much. Well I think its about time this stops as I can't physically take any more. My head is on the virge of snapping.

Well if sufferig from depression and pain from damaged nerves wasn't enough, along side cluster attacks, my Hiatus hernia and heart has decided to join in too. Not sure if it's just stress causing it or if I'm going to have a problem but my blood pressure is through the roof, I can tell as everytime I lean forwards or bend over my head starts feeling like it's about to explode as if pressure building up not to mention the chest pains. 

Well one thing is for sure, this virus and lockdown is starting to show people's true colours. Selfish people who would rather party and do what they like putting sick and elderly at risk and all they do is complain when all they have been asked to do is help not spread the virus by staying at home or keeping socially distanced,  It has opened my eyes over the last year or so. I pray to God that all this gets sorted soon and we start getting some normality back. Not to mention being able to go fishing again as that alone is doing my nut in.  I really don't know how much more of this crap I can take!!!! 

My Covid19 record 2020

I haven't bothered writing any blogs so far this year as i feel all our minds are on something a little more pressing and important. It really does put things into perspective when in the midst of a virus pandemic. I thought it was important to make a record of some of the main things that has been going on lately with this pandemic. 
So this is my record of Covid 19 - 2020 

 I never thought i would ever in a millions years witness something like a pandemic in my lifetime. Its normally something your read in history books or hear about in lessons at school. things that try and teach us not to make the same mistakes. It's crazy to think whats going on around the world and so many people dying and suffering. It really puts your life into perspective and you start to realise that material things in life are not as important as you thought. 

There are many who believe they have already had the virus and managed to get away with mild symptoms but even then they still struggled with issues from this virus. There are 100;'s of thousands of people who have had a bad reaction to the virus and end up paying with their lives. Everyday we wake up dreading the news on TV telling us of the latest figures and recovery plans to try and get control and recover from the pandemic. People avoid hospital as they don't want to risk catching the virus as no one knows how you will react if it will be mild or deadly, its like a game of Russian roulette 

. Hospitals don't want to deal with minor issues for them but big issues for the patients but they are told to wait for treatment after the virus has subsided as the hospitals are in fear of being over run. Armies rush to build field hospitals in stadiums and various buildings to take care of the increase in infections. People are told to stay home and not visit yet you always get some who refuse to play the game and end up breaking rules by going to parks. Many start taking up cycling to keep fit and get out and about so they are not trapped indoors as it is one of the allowed exercises by the government. 

Its all one big shock to the system and something i never thought i would be involved in. My mother caught the virus and ended up in hospital and is now in recovery and still struggling as i write this. My brother had symptoms at the start and had to self isolate. I suffered a strange flu like illness back in November despite having the flu jab which resulted in loss of smell and taste , a very high fever and struggling to breath. At the time i thought it was because i had a chest infection and my smoking had made it worst. Thankfully i have oxygen at home to deal with my clusters. I then get a second bout of the same illness at the start of the outbreak but thankfully am all clear despite still having to be rushed into hospital twice and finding out that the damage i have in the nerves on the left, i now have on the right side of my neck as well so have lots of trouble to look forwards to in the future with the right side of my body just like i did with my left side.  My step father had to self isolate for a long period due to my mother catching the virus, Its all been one crazy experience and very worrying.

We are now at the end of April (25th) and the amount of infections per day is starting to reduce and the amount of infections becoming problematic and resulting in death has decreased.  As they say the curve has flattened but its still quite a high amount of people everyday getting infected and a lot of people dying so i think its going to be a long while before we get some sort of control over this and i pray that we find the cure and vaccine as quickly as possible.

I can honestly say this is a LIFE CHANGING AND WORLD CHANGING EVENT and one year i really want to forget.....

The main points.......

Prime Minister Boris Johnson started lock-down on the evening of 23rd of March 2020 🚫

On the 5th April he was admitted to hospital after 10 days self isolating with the Corona Virus 🧪

On the 6th April he is in intensive care with deteriorating symptoms 🩺

The Queen addressed the nation at 8 pm on 5th April 👑

Excel now known as NHS Nightingale and will be a hospital for up to 4,000 patients, most of whom are on ventilators. 

Similar venues being used in cities across the country. Opened by Prince Charles at 11am on 3rd April 🏥

Community support groups established, to support the vulnerable, elderly, immune-compromised and people in enforced isolation due to exposure, in their community 🧓🏻👴🏻

Petrol ⛽️ price close to home 🏡 was £1.02.

Schools closed on Friday 20 March. 🏫Remote learning in place 🎓

Self-distancing measures required ☹️

Tape on the floors at grocery stores ❌ and others to help distance shoppers 🛒 (2 meters) from each other.

Limited number of people inside stores, therefore, lineups outside the store doors 🏬

Non-essential stores and businesses mandated closed 🚫 People who can work 👩🏻‍💻👨🏻‍💻 from home 🏡

Parks 🏕 trails, entire cities 🏢 closed or restricted to locals only in their bubble.

Entire sports ⚽️ 🏉 🎾 seasons cancelled. Recreational Sports Banned, No Fishing!!

Olympics postponed to 2021. 🔵🟡⚫🟢🔴

Concerts 🎫 tours 🚌 festivals 🤹🏻 entertainment events 🎭 cancelled 🚫

Weddings 👰🏼🤵🏻 family celebrations 🥳 holiday gatherings 👨‍👩‍👦‍👦 even funerals ⚰️ cancelled 🚫

No masses, churches ⛪️ are closed 🚫

No gatherings of 50 or more, then 20 or more, then 10 or more. Now, Don't socialise with anyone outside of your home bubble ⚗️

Netflix, Amazon Prime, Disney+, and all other TV networks are on in every home daily now 🎬

Children's outdoor play parks are closed 🎡

We are to distance from each other. Shortage of masks 😷 gowns 🥼 gloves 🧤 for our front-line workers.

Shortage of ventilators for the critically ill 🤒 in many parts of the world.

Refrigerated trucks for the dead outside hospitals in the USA 🇺🇸 Italy 🇮🇹 Spain 🇪🇸 China 🇨🇳 and more.

Panic buying 🛒 sets in before lock-down and we had limits on toilet paper 🧻 disinfecting supplies, paper towels, staple foods 🥗 hand sanitiser 🧴 Flour is hard to get because the packaging comes from China 🇨🇳 and borders are closed 🚧

Manufacturers 🏭 distilleries and other businesses 🏢 switch their lines to help make visors, masks 😷 hand sanitiser 🧴 and PPE 🧤

Fines are established for breaking lock-down rules 🤑

Stadiums 🏟 and recreation facilities overseas open up for the overflow of Covid-19 🦠 patients.

Press conferences daily from the PM 👱‍♂️ and other government 🏛 officials. Daily updates on new cases, recoveries, and deaths ⚰️

Government 🏛 incentives to stay home. Barely anyone on the roads 🛣

People wearing masks 😷 and gloves outside 🧤

Essential service workers are terrified to go to work 👮🏻 👩🏻‍⚕️ 👲🏻

Medical field workers 👩🏻‍⚕️ are afraid to go home to their families 👨‍👧‍👦

A 99 year old WWII veteran Captain Tom Moore raised £28 million for NHS charities walking 100 lengths of his garden before he turned 100. His target was £1000. People from all over the world donated to his cause. 💂🏻‍♂️🎖🏅💷

The amount of deaths so far is in the 100's of thousands and climbing each day.

This is the Novel Corona-virus 🦠 (Covid-19) Pandemic, WHO declared March 11th, 2020.

Things can only get better,,,,

After years of suffering and constant cluster attacks it has been a difficult journey learning to deal with this illness and the problems it brings. One big problem is the fact that you end up cut off from the world unable to go anywhere due to fear of having attacks all the time. Oxygen is the biggest help out of all the medication and being able to take it with me when i go out would mean i can get out and about more and not feel cut off but its been a difficult battle in order to get a portable version as the big tanks are just too big to carry with you. Its fine for times when i go fishing as i can just chuck the bottle in the van and take with me that way but not always do i have transport available to take me.

Thankfully the hospital listened to me when i last went to see them and understood why i was feeling so cut off from life and struggling on a daily basis. They finally changed my script to not only allow me more oxygen bottles but also a portable system that i can carry with me at all times in case of the attacks when i am out and about. This is such a relief especially after struggling for so many years, When i was first diagnosed i thought my life was over and it would be one down hill struggle but i am finally getting some sort of control again and having portable oxygen available to me means i can once again be a social person. 

One of the reasons i had to stop my fishing through the winter is because my attacks increase to such a level its impossible to cope with on a daily basis unless i have oxygen available to me. Even though i have the injections to abort an attack i am only allowed 2 in a 24 hour period with meant when i have days with 4 or 6 attacks happening i would have to fight the attacks and ride the pain making for one miserable life. Now i have the oxygen and the portable unit i am going to be able to get out much more in winter again meaning i wont have to stop my fishing now and can get back on the bank sooner than i planned. Lets just hope everything else goes according to plans now. 

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..... 

I don't know how many more times i will be able to pick myself up again

Once again i find myself having to deal with other problems caused by medication and side effects. Every time i think i am getting to grips with things or i am starting to improve there always seems something that starts up to put a dampener on everything. Its not enough that i have to deal with cluster attacks on a daily basis for the rest of my life but to have all these other problems as well is really starting to annoy me and get me down all the time. Again the hernia is playing up and causing food and liquid to trap due to a build up of wind from a side effect of tablets. the wind causes the hernia to push up against the chest under my heart and not only causes pain and fake heart attack symptoms but also causes the food to trap and stop it going down. This builds up over time and i end up with some crazy acid re-flux. 

The worst thing about this constant re-flux is the fact every now and again , when the weather starts warming up i get a fungal infection start to appear on the back of my tongue and then down the throat. Having thrush on the tongue and in the mouth is most unpleasant and ends up giving me allergic reaction style symptoms and makes me feel so ill. i have to use gel and mouth wash to get rid of it which usually takes a week but when its really bad i can end up on strong antibiotics. This has only started ever since i was diagnosed with the Hiatus Hernia. The specialists said i would start having allergies to things that i have been able to use or take for years as the body chemicals are now imbalanced as the body constantly attacks the hernia for a while and then starts to adjust as it gets used to it. I supposed its just a matter of learning how to deal with it myself now. 

The clusters have been behaving themselves thank god but i have been having some strange migraines rather than attacks. The flashing lights and visual effects just before the migraine is a bit worrying as they are very strong and makes me start sweating every time they appear. I haven't been using the injections when having cluster attacks instead i have only been using oxygen and i have found that i have been able to manage on oxygen alone. OK i am going through twice as many cylinders than before but who cares if it means i don't have to take the injections and will keep them only for really bad times and emergencies when out and about. 

I have been feeling rough for the past 3 weeks due to some virus. I have been blocked up and getting bad chest pains due to the hernia and the re-flux. things have only just started calming down so i am hoping on getting out and doing some fishing next week as this always helps with my mental state of mind and has been my main focus whilst dealing with the illness and all side problems. I really don't know what i would have done if not for my angling so i am very grateful for that. I am hoping to start my fishing season early this year as thanks to a friend i have now joined a private syndicate with some monster fish in and i know fishing here catching some stunning fish will do me the world of good. Out in the fresh air doing a sport i love will only help to give me a positive outlook for the up and coming year ahead. Lets see if we can make this year a good one and not get knocked down too many times as i don't know how many more times i will be able to pick myself up again.