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!!!!