Depression

What I truly despise about PTSD, depression, anxiety, loss, pain, crohns, my heart issues and fibro is people see them as inconsequential and choices. They assume if you dare to share their effects upon you that you are being weak or attention seeking.

Well Saturday I was being strong by letting folk know through my posts. I was fighting one of the hardest enemies any of us can face, ourselves.

I did not do any of the things my mind was telling me, no actually demanding I do. I reached out and some fabulous folk recognised it was bad and responded, some people missed it and sadly a very few others likely didn’t care. Some of those particular people being those that share all the supposed mental health awareness posts.

That’s no matter now, I got through the weekend, I am still here, I am not suddenly well though, every single day right now is a constant battle where triggers, walls, mist, and blocked pathways are the weapons my brain uses to overwhelm my decision making, my motivation and sadly too often my argument to take another breath.

I am no worse off than countless others, and probably better off than many in some ways, and I promise this in so many ways is not about me, its about not being too late to recognise friends and just how things are developing for them.

I fight each day, for me it would really be so easy, a simple extra this, or more of that. I have sat planning far more than once, but so far on the whole have been able to find another road that may offer even if briefly some small semblance of hope.

I see folk and they see a joker, a confident possibly arrogant self opinionated bloke, with good friends and a nice bike. And yes that I’d mainly the me I choose to project when out and about, but I absolutely swear that is only 5% of the true me.

I have remained here with difficulty by remembering I am a parent and son, but recently I have begun to realise in my case that is not how I am seen by those involved in those relationships, so that defence wanes daily.

The person I project face to face is possibly the me I would like to be, however the one I am is fighting a constant war withing a limbo of despair and clouds.

I like everyone have little say in how long I remain, and it may be minutes, days, months or decades, in some ways its no longer about length of time, its about manner, whether I continue to hold my own or whether the illnesses prevail.

Today I am not finding holding on as hard as Saturday, but it still is a struggle and the inner conflict rages on and on.

Jonesy.

Government cruelty

I see the DWP are threatening claimants again.
They will it seems be monitoring people not only parking near their homes and filming them but also monitoring social media and recording conversations.

Now I have issue with this on many levels. Why? Well firstly chronic illness and disability means that every day is a challenge for people. It means that they have to adopt means of trying to live a normal life that others observing them will have no inkling of.

For instance I have various chronic health issues including crohns disease, out of control diabetes, neuropathy, Fibromyalgia, COPD, asthma, anxiety, depression and PTSD, to name a few.

My crohns means life is not easy, it restricts not only my diet but all my life choices. I need to plan journeys with toilets in mind, to be prepared for worse outcomes. At the moment I am in remission but that is due to taking extremely strong medication that damages my body and removes my immune system. One of these meds is listed as a poison.
Can you see that? I think and hope not.

My diabetes means I have to take insulin. I have to monitor myself all the time. My blood sugars can go from 2 all the way to 32 in the space of an hour. I can be having a hypo where they are dangerously low to a hyper where they are dangerously high. A hyper can bring on keytoneacidosis which is the very thing that ultimately killed my 35yr old brother a year and a bit ago.
The diabetes can not only effect stability, mood….swinging from happy to angry to agitated to frustrated, but also my consciousness. Luckily I can feel the signs of a hypo reasonably early on and treat it in a suitable way, which is the only reason I am still allowed to drive.
Can you see that? Sometimes maybe.

Neuropathy and retinopathy are both side effects of poor controlled diabetes. Why is it poorly controlled? Well the diet for that and crohns are at odds with each other. It means choices of whether I risk days, weeks or months of being attached to the toilet or I have the same periods of low and high blood sugars and keytones.
The neuropathy is nerve damage that causes pain which also means I get tired, sleep deprived, can’t stand the feel of clothing or bed sheets and do not always feel pain through damage especially to my feet. That can lead to sepsis and ultimately amputation.
The retinopathy is ongoing damage to my eyes. Can you see that? I doubt it.

Fibromyalgia, well what can I say about this? I thought before I personally had it that it was a made up condition. That it was in people’s minds. How wrong was I?
Fibro more than any other illness has stolen my life from me. It is this that means I am in constant pain, and I mean constant. Not a second goes by which is pain free but it’s how manageable it is at that point. Some days I can cope with or even without the fast acting painkillers I am prescribed such as codeine, morphine and oxy. Other days, the days you will not see me I cannot. I also daily take other meds that run in the background to combat the pain.
Fibro means I feel like I have lava and ice running through my veins at the same time. It is a constant ache, but the word ache does not come close to describing the pain.
Alongside of that, is exhaustion, it come in waves and can last a few hours to several weeks. There are times people do not see me for weeks on end because I am at best housebound. This exhaustion means I can’t think to do basic tasks from cooking to toileting. Housework becomes a no go.
Brain fog is another effect that hits me. I can be in mid conversation and forget everything I am talking about. Think how frustrating and embarrassing that can be. Think how hard that makes having the confidence to leave the house. Yet I do when I can.
Fibro means I cannot walk without pain, my muscles are weak and my senses can be dulled. The constant pain means a constant state of fight or flight within my body.
Can you see this? Occasionally maybe but likely not.

I have a diagnosis of COPD, but this along with asthma have improved with 10yrs of not smoking, of ensuring I have my meds with me, but even so I am often breathless and cannot venture off to places I would have loved in the past. It can be scary and when I get an attack which now thankfully is rare I can panic even now.
Can you see this? When I am having an attack yes.

Anxiety, well people truly have no understanding or often empathy for mental health issues of any kind. Anxiety is surely just being a bit nervous at times, flighty even? Anxiety can’t kill, can it?
Think again. Anxiety is horrific. It makes you over think everything. It is living in a constant state of panic, from seeing a car parked outside and imagining you are about to be attacked, robbed or being erm…spied upon by the DWP, to hiding when the mail comes and refusing to open any letters.
A knock on the door can build to terror and there can be days I don’t open my curtains in an attempt to hide from the outside world. It means sleep may not come despite not being able to escape from my bed. It can mean I do not communicate through suspicion of who may say what to who. Scenarios build in my head causing my vivid imagination to become the worst of enemies to my mind. Anxiety causes extreme stress, and yes stress does kill.
I try to rationalise myself out of anxiety but that then has an adverse effect upon my depression.
Can you see that? Probably not.

Depression, well its just being a bit down isn’t it? Just a simple need to pull myself together, chin up, think happy thoughts?
Sadly not. Infact all of the glib sayings are not only unhelpful but are damaging, so please think before spouting them.
Depression is not a state of mind, it is not a mood. Depression to me often becomes a huge dank castle of despair as real as my little bungalow.
It’s damp grey black walls covered in wet moss and grime. It is a place of no easy escape. A place where hope falters and despair becomes my only companion.
Depression can hit me at any time, it has even enveloped me in a dark fog simple walking across the market to get a bag of chips, and has meant I lost all idea of time and direction. People became shadows. Buildings disappeared.
I cannot ever hope to describe all of the effects of depression, because as with trying to convey the greatest of love, words do not quite cover it.it is as I said loss of hope, it is darkness, it is losing sight of any path forward or indeed back. Reality becomes enveloped within it. Time has no meaning and it finds ways to undermine any form of lucid or rational thought. Depression physically hurts, it brings on immense pain from within. It steals all positivity, all emotion save the dark ones. It drains motivation and at times, all too often for me and so many others it steals our worth from us, we see the world as improving if we are no longer resident within it.
It matters nought who cares or love us, yet we crave reassurance, warmth and contact.
Depression likely is the greatest killer of humans upon the planet and certainly has come close to taking me more than once. It is my constant companion and triggers without obvious cause.
I know this enemy all to well and battle it constantly.
Can you see it? For many no.

PTSD, well this was a direct effect of holding my departed brother in my arms. It is a constant reminder of the resuss room, of holding him in my arms and feeling his sweat upon my skin.
PTSD triggers every single day and though often I can pretend to ignore it the hurt is so hard to bear.
I cannot describe this beyond pain and tears. It has elements of guilt, of regret but in my case is a longing to have him back, to be able to tell him again I love him. To see him help his young son grow up and develop.
As I write this last part my eyes are welled and the pain once more has triggered.
This likely will never leave me but in an odd way does keep every detail of Robert clear in my mind. I just wish it did not hurt this much.
Can you see this? I hope not and hope you never experience it.

These are my personal reasons for being angered at the constant announcements of being watched, monitored and spied upon. Another reason is that this tactic of government to lay blame for economic ills upon the most vulnerable within our society again distracts from the very real and huge amounts the governments own corruption robs our country of. Ministers, their families, corporations and even foreign governments all benefitting from their dodgy dealings yet they seek to lay blame, instill hatred against the sick and disabled making them feel guilt and self loathing for trying on their better days to have some scant enjoyment of life. To make their existence to amount to more than wake and sleep within the prison of their illness.

So yes on my better days I may choose to live. You may see me as being ‘normal’, you will not see my pain, my exhaustion, my fear, my anxiety, my despair, my trigger. But I assure you it is all there, it will be simply upon this day, the day you see me I will be hiding it better than others.

Jonesy.

I can’t live

What gives us, our representatives or any country or person the right to kill, bomb or invade anyone. Human life is human life. Life is important, more important than anything else. I can’t carry on being part of a society that ignores this and not only robs people of their futures but causes such unbearable pain to those they leave behind.
There should be no need nor excuse for war or state sanctioned murder.
When I lost my brother the pain I felt was new, terrible and beyond anything I ever felt, even beyond the losing of two babies at full term and holding them after they were born.
The pain of loss is not just emotional, or even mental, but is truly physical too.
Life is hard enough, we all will die, some of unavoidable accidents, some naturally, some of disease such as the vile Covid, some through other chronic or serious illness. No one however should ever lose their lives due to the deliberate actions of a government, whether at home or abroad.
In the UK we may not have capital punishment, but we have Austerity, poverty and leaders so corrupt that they deliberately gamble lives against their profiteering each day.
We have a government that happily profits from war, from selling arms, vehicles and even sends troops as ‘advisors’ to train and prop up evil and cruel regimes. A government happy to place out own troops at risk, not for defence, but for oil, for sales, for power, for grooming dictators and unelected self professed monarchs.
We go to war at the bidding of foreign powers without a thought of the lives we will lose or take, the hardship and torture we as a nation will and continue to cause.
This is what destroys me, that and the cruelty of then putting our service men and women, our poor, our vulnerable, our physically and mentally ill on the streets with no support, whilst the quaffers of our leaders and their banker friends grow exponentially.
This is not because I am a socialist, not because I identify as left wing, but because I am a human who believes in life, in people, in humanity. Nothing more.
This is why I cannot accept that I cannot do anything to change things, I cannot pretend things will be OK, I cannot continue to be recognised as a citizen of this truly unjust society.
Jonesy.

‘2020’ hindsight, still a bit fuzzy?

Remember if we had locked down in February, if we had not had a corrupt government giving mates contracts and paying them our money to steal from us, if we had a prime minister and opposition with a backbone, if we had mandatory masks in February, closed schools, airports, ferries, stopped unnecessary travel even if it was to drive across the UK to test our eyes, if we had a primate minister who did not hide, a government that told the truth, that followed medical guidence, that put human life before their bank accounts and status amongst their friends, Royals that had the guts to shout ‘no’ rather than saying they want to be reincarnated as a killer virus, if we had a nation of people with common sense, prepared to social distance, wear masks rather than stand clapping the nurses, doctors, paramedics, keyworkers as those very live savers died on their feet, if we had a media that itself did not publish fake news and propaganda, if we had a government that had not run down all the health and social care services in the name of Austerity whilst paying for missiles we can never use, if we had focused upon our real enemies instead of a few refugees and migrants, not hating folk because of their gender, sexuality, race, culture, ability, if we had prioritised our families and not our possessions, then maybe, just maybe so many families would not be feeling the pain of loss, the fear of loss, the anxiety of even opening their doors. If we did not live in a country that treats its sick, elderly, disabled and vulnerable as scum, a drain, expendable maybe we would have seen the warning signs and acted upon them.
Yes hind sight is always ‘2020’ , (ironic hey) but looking back it’s easy to be made to believe the mistakes were accidental, not the fault of those in charge, unavoidable.
Just to be clear, the Conservative Government, the Prime Minister, the Leader of the Opposition, the press, and the businessmen asset stripping the UK made no ‘accidental mistakes’. Their behaviour was and is deliberate. They are culpable. They should be accountable, but unless we hold them to account now they will kill many many more.
Jonesy

COVID19 EXISTS! SO STOP BEING STUPID.

Daily we are hearing of friends neighbours and their families suffering or sadly losing the battle of Covid19. My heart goes out to those who are ill, dying or have died.
I know too well the pain of the families and loved ones who have died due to it, the worry and helplessness of the relatives of those who are suffering. I also know the fear of being a parent whose kids both tested positive and a son of parents who will be extremely vulnerable to the symptoms of this foul virus.
This morning I cried at seeing one of my friends on Facebook losing his wife yesterday to it.
I am heartened by so many humans who are doing all they can to protect and safeguard others, whether they are paramedics, nurses, doctors, porters, shop workers, caterers, those involved in keeping the infrastructure that protects us all, bus drivers, home carers, support workers, social workers, residential staff, teachers and school staff, taxi drivers, delivery drivers, and the amazing volunteers providing and delivering food, medicines and in the case of Volunteer Riders UK, the sewers manufacturers and others completely free PPE to all in need.

If you deny Covid19 exists, if you think its all a ploy then you need to open your eyes. If you try to discredit those who are putting their lives on the line, or belittle those lost to life then you really best keep away from me.

Covid19 is real, it is deadly, it is killing folk. Its that simple. If you put others at risk due to selfish behaviour then you may not call me friend.

Be sensible, be safe, protect yourselves and others. Do not take unnecessary risks, and please stay well.

Jonesy.

Non Europe?

Just to be clear, Britain has left the European Union not Europe. The UK is a small collection of islands that are part of the continent of Europe. I am as always British. I am as always European. No vote changes that. All that has really happened is we have given more control to the mafia that is the Tory Party, stepped back in time, regained a blue passport and lost rights such as free travel, fishing rights, economic rights, workers rights, human rights oh and are now paying more taxes for the money we still have pay to Europe, as well as the money we have to pay for increases in import and export duties, increase in prices, a devaluing of UK company stocks, increased transport costs to alternate trade partners and are now an isolationist country but unable to actually quarantine the nation against Covid19 because the establishment still want to profiteer and asset strip us all.
So hope all of you that believed the leave campaign lies have come to terms with it.

The pain of losing a loved one means no death is ‘acceptable’

Let’s just be clear Covid19 kills in a horrid way. It’s not an easy death for many, but at times just as bad is the real, very real pain it leaves in its wake. If you have not lost someone close let me tell you about grief.
When I lost my brother it was in the hospital that I was told. I was sat in a little room with my father. A nurse came in and told us both. I had never seen my father break down until then. We both cried but in the back of our minds there was still a small belief they had made a mistake.
They then asked us if we wanted to see him. We were led into the resus room. There behind a curtain was Robert, my 35yr old kid brother. He was 18 years younger than me so not only a brother but like a son to, as well as at times my best friend. He looked asleep other that the sweat and grey tinge to his skin. I leant down and cuddled him. He was still warm but so still. I broke down again, now it was real.
If you asked me to describe the room I maybe couldn’t, but I can the colours and smells. I remember blurs who may have been members of staff.
Neither me or dad wanted to leave.
Then we had to walk to the car, holding my dad’s hand for the first time since I was 6, then putting my arm around him so to steady us both. We were silent. We realised we had yet to tell my mum. That had to be in person not over the phone.
Already my body was screaming in pain but my mind was overwhelmed, almost for a fabulous but brief time emotionless. Only fabulous because what was to happen next destroyed my soul all over again.
We walked into the house and my mum was sat in the back room, she looked up and guessed straight away, yet I still told her. I have never in my life heard such a cry of pain emitted from another human. She fell to her knees and sobbed.
I cannot remember the rest of the night nor getting home.
Thankfully the next day the doctor prescribed me diazepam which to a degree helped a little. The next few days were busy arranging things, with so many emotional breakdowns in between. We had to clear his house, sort out the paperwork, deal with his fuel bills, all sorts of practical stuff that with hindsight in an odd way gave enough distraction that we could at least breath, without the support of each other and my closest friends we would have not got through it.
I couldn’t however go to my toilet without triggering and being dragged back to resus to see and feel him for the last time. My bathroom was the same colour I remember resus as being. I was diagnosed with PTSD. Constantly going back to the night, to resus, to his house.
I couldn’t and still can’t sleep without going back to having the police break into his house, to see his weakened body being carried out on a stretcher or being told he had died.
I was initially so angry, to the point I told the patients waiting to see his GP just how the GP’S incompetence led to my brothers death. And even a year on I am not just convinced of that but can now evidence it.
Not a single day even now passes without me becoming tearful, me regretting not saving him, not telling him I love him enough. Most days I still cry my eyes out. I miss him more now than any teenage angst at losing your first true love.
It effects my health conditions both physical and more so mental now.
The pain hurts as if I have been punched and punched over and over. It’s like fight or flight, without an opponent or path of escape.
I never realised how much losing someone could hurt. Every day I wish not to be here, to go join him, but I know if I did I would be condemning my folks to even more pain that they would not survive, and putting my kids through the same experience as me. I cannot do that to them no matter how much I hurt.
Every morning after him visiting me in my dreams I wake to the reality he has gone.
Neither my mum nor dad will ever recover from this.
They ache to see his son but sadly my brothers ex makes that difficult to impossible more and more, despite playing the grieving widow at his wake, and telling all and sundry that she would ensure his son would carry on seeing his fathers family. All I can say is that was a cruel lie.

This is my personal ongoing journey and experience of loss. My only other real losses prior to this was my ex wife and I losing two babies at full term. Anne and Leo. They were and are loved by both of us, that loss was beyond painful, and with losing them we lost dreams and maybe our future as a couple, but we only knew them for who we expected them to be, whereas with Rob he was a pain, a git, but also amazing, loving, a proud dad and sadly a very ill young man who was continually misdiagnosed by those who should have known.
I have written this as an abridged insight into losing someone you love, for any reason. It’s why I started Volunteer Riders UK, a bikers group that has so far delivered over 6,000,000 items of completely free PPE without any cost, to the NHS, the military, to carers, nurses, community teams, front line workers, shop workers, bus drivers, school and college students, the vulnerable, the sick and the disabled, we still do this daily despite the Government making claims everyone has PPE.
So when you tell me there have only been 60,000 deaths over the yearly average so far despite Covid19, please remember that’s potentially 60,000 families, multiplied by however many family members all going through the same pain I have described.
In what dimension is that acceptable?
It is not.
I hold that if the UK had gone into full lockdown and quarantine in March 2020 the vast majority of these deaths (to date at time of writing 71,567 on 30th December 2020) could and would have been avoided. Almost all of those families would not have experienced loss.
1 death too many is inexcusable, but this is beyong criminal.
So forget tiers, put the entire country into full lockdown now, not a week Wednesday, quarantine the UK. No flights, no ships and close the tunnel.
Definitely no schools, colleges or universitis should be open.
Where people have profiteered, been criminally negligent or deliberately broke the rules prosecute them. That means business, individuals and the bloody leaders of our government.
This pandemic is real. People are dying. Families are suffering. No more lies, no more conspiracy theories, no more selfishness. No more greed and corruption.
Please feel free to share.
Keep my name upon it for its my experience.
Jonesy Jones

Customer Care? HOTPOINT NO!

https://youtu.be/MR7smay4mY4

Just watch this taken from hotpoint Facebook, almost 5 minutes of complaints, I could have recorded 5hrs https://youtu.be/MR7smay4mY4
I bought hotpoint washer dryer a week ago. Same day it was delivered the door leaked. A week on despite emails from appliance direct and calls from me I have not got through to them or had contact. Are they going into liquidation? Once a reliable company now sunk to this. I am disabled and need to wash daily. Not acceptable. Will be advising on all forums not to buy hotpoint. Shoddy quality shoddy customer service.
If they are not going under trading standards should close them down.
Minevwas a leaking door, others have had doors fall off, even it seems appliances exploding and catching fire.
Seriously DO NOT BUY HOTPOINT OR ANY OF THEIR BRANDS!