Tag: #disability #depression #unseenillness #Jonesy

Attempt to get MP to listen

I have just written this to my mp. Please email yours.

Dear Louise Jones MP,
You are my Member of Parliament, as I live in your constituency.
Your party, the current Labour Government, has decided to impose, what to me seem draconian changes, to the welfare state, which, currently is realistically the sole support disabled and chronically ill/sick people have, in order to live the best lives they can.
The current system, I admit, is flawed, and is actually already disadvantageous to anyone having any health challenges.
The proposed changes that Rachael Reeves MP is announcing, if anything, are further breaching the rights and causing even more discrimination towards any UK citizen that dares to become unwell or disabled than even decades of the corrupt dehumanising Conservative governments managed.
Prior to becoming ill and being recognised as being a disabled person under the Disability Act 2010, I was a senior Social Worker and Team Manager in both Child Protection and Statutory Provision of Children’s Services.
I was, and still am, on the Social Work England Register.
In 2016 however I became ill, and after several years of already having diagnosis of Crohns Disease, and Diabetes, (at the time the diagnosis was type 2, which now after 35yrs has been re-diagnosed as type 1), I was diagnosed with Fibromyalgia.
My Crohns Disease also flared up meaning not only could I no longer practically due to constant pain and exhaustion, work in my chosen field, that of a qualified and registered Social Worker, Senior Practitioner and Team Manager, I lost all my remaining dignity as a human being.
My loss of career was absolutely devastating to me, even more so than the loss of my good salary and all the life choices that it brought, I lost all my self worth, and any pride I once had in myself.
I applied for Employment Support Allowance – ESA, and Personal Independence Payment- PIP, and despite expert reports from consultants, GP’s and specialist health professionals, it took months for a decision in regard to my ESA, the PIP took over two years and a formal Court Tribunal before a decision was made in my favour. I did receive it back dated but this did not fully cover the debt, that both formal loans, and family loans from which I had to rely upon, just to manage the effects of the Crohns Disease upon my life. I will spare you the details of such effects, just in case of your disposition being effected.
In 2019, my parents, my sister and I lost a 5yr battle to keep my brother supported and alive.
He – Robert Anthony Jones, aged 35 and father of Alistair Jack Jones (5yrs at the time) died of Ketoacidosis, and effect of his diagnosed type 2 but in actual fact type 1, diabetes.
He was failed by the systems that should have supported him, he was discharged from Chesterfield Royal Hospital with blood sugars of 48mml, and severe kidney damage, this was due to him being seen as verbally aggressive, though actually he was in a state of delusion & delirium, caused by his extreme blood glucose levels.
The ward staff had no training in ketoacidosis, and their malpractice ultimately led to his death, however, failings by the DWP, the Jobcentre plus and other local services made his final few years beyond difficult, and were a factor in the breakdown of his marriage, which, itself had been a protective factor that may of saved him.
This is my background.
In 2020 I had an idea to protect people that with much help and assistance of others developed into Volunteer Riders UK. This was a Facebook group that evolved into 3,800 people working together to source, manufacture, supply and transport PPE (as defined by the WHO standards, and actually improved upon), throughout the UK to NHS staff, nurses, doctors, hospital staff, carers, and anyone else on the front line. We supplied entire areas of specialist health teams, whilst MP’s, their mates and families profiteered from substandard or non existent PPE.
We were completely cashless, not a penny changed hands from manufacture to receipt.
We provided substantially more than 10,000,000 pieces (that’s when we stopped counting) to all of the UK, parts of Ireland, and even used a donated plane to supply Namibia.
I personally was nominated several times for awards, some local such as the Derbyshire Beacon of Light Awards, and others, but also I am told, for Queens honours, which, once I was told of, I politely refused.
I did with the help of my carer and best friend attend the last ever Queens Garden Party, as the founder of VRUK.
Why did I set the group up? Because after losing my brother and holding his lifeless body in my arms, I wanted no one else to feel the pain of that loss.
So now to these proposed changes, will they effect me?
I will be effected, in fact I am already effected.
I have several chronic health issues, including type 1 diabetes, severe chronic heart disease, crohns disease, fibromyalgia, PTSD, depression, anxiety, social anxiety, angina, SVT, COPD, asthma, dental regression due to medication, suppressed immune system, neuropathy, chronic exhaustion, brain fog, and several less pleasant conditions that are a result of complications or medication side effects.
I have, only 11 weeks ago undergone a triple heart bypass. I have previously had a chemotherapy medication regime to control my crohns disease. I have been in and out of hospital several times this year, including twice having my heart stopped. Every day is a challenge to me
I have no idea what the physical or economic effects the PIP changes will bring, but for me, like so many others they already have triggered my PTSD, causing me to relive in the worst possible ways the effects upon my brother of economic hardship and threats, it has made me more paranoid about opening mail, phone calls or even a strange car parked outside my home.
My depression is at an all time low, I have undertook grief counselling which ended with me being told by the counsellor that usually they get people to look at the reality of their triggers, however mine are all factual and therefore I was already a realist.
I currently am undergoing further work around my PTSD.
My reality is that I am living in a world that my mind uses my own life experience to define expected outcomes. Sadly though non of these outcomes are seemingly likely to be positive.
Any changes to the limited security we have as disabled people brings panic. We are already dehumanised by the media, and villified by right wing prospective MP’s, we live under an increasingly used banner of “scrounging scum”. It is beyond embarrassing to have to describe yourself as unemployed due to health, as people begin to see you completely differently.
So again I ask, no I beg that you vote against the proposed changes, I also beg that you recognise disabled and chronically ill people as human beings, and understand that the proposed changes are an outrageous and inhuman attack upon the most vulnerable in society, and even a basic knowledge of 20th century history should give you and your Party rise to recognising the stark similarities of these proposals and the manifesto and actions of National Socialist Germany.
The proposals have already cost the lives of UK citizens, and likely of your own constituents.
Help us put a stop to these proposals before it’s too late.
Please feel free to contact me to discuss this or any other issues on
Yours
Simon Jones

Sadly 3 days have passed and no response.

Disabled scum…..a life in the UK

In the UK today, if you are a person with disability or chronic ill health,and you are not wealthy enough to live by “independent means”, you have to claim what are laughingly called “benefits”.

The so called “benefits” you can claim are Universal Credit, ESA – Employment Support Allowance, and PIP – Personal Independence Payment.

Universal Credit and ESA are both means tested, so if you are wealthy enough to have savings, that are not hidden in the Seychelles or other off shore accounts, you may not get them, although if you have over £6,000 in savings you won’t get the full amount either. So people that have managed to save a nest egg when working may also lose out, until they become broke.

PIP however is about how you disability effects you. It’s not means tested, anyone who meets the criteria, can apply.

Sadly though, PIP is not fit for purpose, it limits choice as it is, however if the government then decided to restrict it further with vouchers the government would just encourage even more disabled people to take their own lives.

It’s already shameful that being ill or having a disability stops people from living their lives as they would wish.

Before I got ill I spent many years as a child protection social worker, trying to ensure children and families were kept safe from harm. I have seen PIP. and disability from both sides. I have seen a very few folk that upon the face of it play the system, but given i am not their doctor, cannot feel what they are going through I could not say for sure, but have alsi seen countless folk who have been turned down when they should have been recieving it, had it stopped for technicality, and not then got it back, had it stopped out of some bizarre consequence for daring to try to live, and had it used as a threat for compliance.

Disability payment has been used as a diversion tool by consecutive governments since 1979. It has lead to the current system whereby people have to jump through hoops often at the worst times of their lives just to get a very basic level of support.

Disabled and Chronically Ill people are told they can claim for “benefits”, but these are not “benefits” they are our entitlements we have paid for through the systems that have been in place since way before I was born, “national insurance”.

Once people claim these so called benefits they are placed in a position where they live in constant fear of their entitlement being stopped, they are condemned if they are seen as trying to live as normal a life as possible, not only by the Department of Work and Pensions – #DWP, but also by the public and even people they see as friends or family. The effects of this fear also stretches to them being seen as scroungers, as an underclass, as what certain members of previous government have identified as “eaters”.

Even simple things like going on holiday are restricted, not only as where they can go but duration, having to risk losing their “benefit” – means to live and survive, if someone in the DWP deems their holiday breeches some internal guidance.

Beyond this, things that when I was working would have been confidential to me, such as my bank account, my spending, my economic habits are now scrutinised without even agreement or  notification.

Having to live upon benefits due to illness is not an easy life, it’s not a choice or lifestyle. When I worked full time I had a purpose, I had reason to live, I also had an extremely good wage and standard of living, giving that up to survive upon benefits was never a choice. 

People see me on the few better days I have, and if I am coping with the constant pain, the exhaustion, and putting on the act, which so many of us feel we have to do,  the making out to onlookers, to friends, to family that we are coping, if I can put my brain fog and confusion to one side long enough to appear interested or focused in a conversation, then they will have no realisation of my fight, of my battle I fight each day.

Sadly though because people only see me on the days I feign being able to manage, they see me as a fake, as a scrounger, as someone living a life paid for by everyone else.

The thing is they do not see me on the days where I cannot even get out of bed to make it to the toilet, where I cannot stand long enough to make a brew, where if no one is here I don’t eat, when I only see a grey mist of disinterest, despair and hopelessness. they will not understand the living in constant pain, of every movement hurting, of not being able to undertake the most basic of tasks.

People do not have any understanding of the effects of not being able to plan or commit, of having to cancel appointment after appointment,  to the point of being struck off dentist, doctors and consultants lists. Of having housing threatening you because you had to cancel three appointments for your gas safety check.

People do not see the fear of the doorbell, the not being able to let folk in because you have not been able to complete the most basic of domestic tasks or personal care. The loss of pride in your home, in your life and in your self.

It’s impossible for many an outsider to recognise how illness strips away not only pride, confidence and self worth, but the relationships we held dear, not only friends but close family. I now have no relationship with my son or daughter, and at times only a fractured one with my parents, and sister, and the loss of countless friends that once called me “brother”.

So before you or government judges people with disabilities, with life restricting and threatening conditions, with terminal illness, before new legislarion is brought in to vilify us even more, to test our resolve to remain alive, to prevent our inclusion as valued human beings, to identify us as even more worthless, to steal our choices, to destroy any hope of living a sustainable and valued life,please think.

Disability and chronic health conditions are sadly too common, they are not expected, not part of any plan we may have, they hit us at any time, often when we begin to feel our lives are worthwhile,  whether measured financially or in the self respect we hold.

The only difference between you and someone in need of the support PIP should bring is circumstance. You may be well today, but tomorrow…..? That’s why we pay “national insurance “,  it’s why we used to value families and community.

So stop condemning the most vulnerable in society, and give us the respect and support we all as humans deserve.

Unseen illness & people’s recognition.

I truly have just realised its not about how visible a pain is, my epiphany today is that folk only understand the pain that they themselves have been through.
This is absolutely why invisible illnesses such as Fibromyalgia or Chronic Pain Syndrome are not accepted, even it seems by some ill trained professionals.
We are asked to describe our pain, but for me that’s like being asked to describe the shapes I see in smoke.
If I said a “velociraptor” but you had never seen one it would be meaningless.
I currently have just had the wrong tooth removed by my dentist and developed a rather painful abscess under the tooth he should have removed. Now on antibiotics for the pain.
The people who I have told about it are all genuinely sympathetic to my pain, but for most I believe it’s because they recognise the severity of tooth ache through personal experience or the experience of close friends and family. Its lovely to feel the support from these folk, truly, and most of these fabulous people I see as my family anyway, however, when I describe a fibro flare up, or the after effects of a hypo, or the embarrassing situation crohns can leave me in, or worse in some ways the destructive effects of anxiety, ptsd and depression have left upon my life, the loss not only for my brother, for my still born children, for my….er, self by losing career, identity and most of all my still living family, because its not something that they or many of you have experienced there is no point of reference for them. This not their fault, no competition, and sadly some of my issues they will have had to live through and vice versa. I am not saying my situation is any worse than theirs!
Maybe when we use a phrase to identify an illness not seen nor understood we should call it a “not yet experienced by you illness”. (I am sure there will be better suggestions).
These illnesses are not always (but all too often can be) fatal, and when they are the cause of death will likely be “misadventuture”, not “the only end to the suffering” or “an end to pain” or “a scream for help”. Maybe if they were seen as potentially fatal then its possible we would all offer support rather than seeing those fighting these illnesses as weak, it is possible we would recognise them as as strong, as the warriors they are, not as feeble (a phrase been bandied to me).
Does it really matter? Well yes it does. With so called “invisible illness” there is not just the illness itself to contend with. It maybe that you have to take stupid amounts of meds including pain killers, opiates just so people do not see you as “putting it on”. For me personally I constantly wear a pain patch, I take codeine, morphine, and paracetamol almost every day, I also have to take other poisons including very strong immune suppressants just to stop me soiling myself. My lack of concentration whether through illness, pain or medication inhibits me every single day, it’s akin to having dementia, as I forget things whether the cooker, a task or even what I am saying during a conversation.
I strive every single day to hide the pain, to ensure people do not see me as weak, or useless. I get angry, more at myself than others but that anger is destructive, because it feeds my interaction with people including those i love.
Not being able to get up some days nevermind leave the house, not just due to pain but anguish, fear, lack of motivation, and…..so many other reasons that cannot be voiced with mere words.
How do you explain this to folk that haven’t experienced it? Well you can’t.
If but it were a tooth ache, a head ache a broken bone people would get it, but non experienced illness whether with a physical or mental causation is not understood by so many.
I am sorry to babble on, but I do hope some who haven’t and I pray will never experience chronic invisible illness will read this and just think about those folk they know, those who have to live like this.
Jonesy.

Sleep deprived

Here I lay in the dark with all so tightly closed eyes, yet inward I see such angry storm filled skies.

Gazing upon a raging purple sea, mountainous waves towering above the frail shadow of a marooned cast aside me.

The surging swirling currents dragging pulling deep down below, into the most hostile place I must go.

Balance or demon I can truly no longer decide, searching in the diminished light I long to again hide

In a transcendental turmoil my my mind continues to dwell, some truth in this version of a yet unseen hell

No armour to protect the feeble creature now present, all my undeclared sins being outed, I must repent

Wishing I held a host of weapons by my side, feeling sorrow that the child I once was had yet again died

Rams head decaying upon a gilded human frame, urging my past digressions to publicly goad me and defame

Longing soon this foul torment must finally end, tonight is the same, not even a divergent despair to descend

Asleep or awake the nightmare still haunts, all my pain and loss engulfs a mind with screaming taunts

Childhood innocence gave me some hope, but losing loved ones, role, ability, reason, makes it difficult to cope

Another futile sleepless night draws to conclusion, a wasted day to follow without any human inclusion

Wanting the man I once was to again reappear, but knowing deep down the cost of hope is too dear.