Down
I’m not really sure where this piece is going to go. One thing I do know, though, is it’s not going to be particularly positive. So why am I writing it? Two reasons.
Firstly, I need to empty my head, express myself somehow. The alternative is to just sit and cry, which would only make my headache even worse.
Secondly, I hope some undisabled, healthy eyes read it and gain some sort of understanding of life in an ill and disabled body.
Deceiving
There’s a saying – looks can be deceiving. I worry about that every time I work on this website and see the images on it of my standing, especially those showing me in locations like the river. They concern me because I rely on a Benefit for disabled people called Personal Independence Payment (PIP).
In order to qualify for PIP, especially at the higher levels, you have to be very ill and disabled.
PIP is my main source of income. Without it, I would have to survive on around £4000-4500 a year, £1200 of which covers the rent for my Housing Association wheelchair accessible bungalow.
Looking at those photos, many people would think I’m far more physically able than I am. They’d call me a ‘fraud’ or a ‘faker’, tell me my body is not as ill and disabled as it is.
What they wouldn’t see is the days I stayed flat and still before taking them so I was able to get to the river and sit and stand.
They wouldn’t see the days after that shoot where I was in agony because I had stood in the water. If the DWP (Department for Work and Pensions), the body that decides who qualifies for PIP saw images of me standing, its staff would probably decide my body is not as ill as it is and would stop my PIP payments. I would be plunged into poverty, struggling to buy even the cheapest food, pay utility bills and cover my rent.
Part of me thinks I should delete the images to protect my income, but I haven’t because I know how much it hurt to take them. I also think we ill and disabled people should be allowed to do some things in life that bring us pleasure and help us continue battling our bodies and the mental impacts of being in them…
…Because that’s what living in a body like mine is – a mental battle.
As I’ve said elsewhere on this site, my Ehlers-Danlos Syndrome (EDS) is progressing. It’s getting worse at a surprising speed. Things I could do four or five months ago now cause me agonising pain.
For example, when I worked on rebuilding this website…Experience has taught me that sitting upright at my desk or even on my bed will hurt. My pelvic injury (detailed in Pain) may kick off, causing the cartilage between the bones where my pelvis meets at the front to swell. That is excruciating, limiting my ability to sit, stand, move my arms, legs and head and makes breathing uncomfortable.
I already know my extraordinarily unstable hypermobile spine would hurt. I understand that my neck would object and I’d suffer almost unbearable pain in my skull caused by a drop in the pressure of my cerebrospinal fluid (CSF) as it gathers in the group of huge cysts around the roots of the nerves as they leave my spinal cord in my sacrum, and around the bottom of my spinal cord where the membrane around my central nervous system isn’t made properly and stretches out like an inflated balloon (Dural Ectasia – related to Spina Bifida).
I risk experiencing all these debilitating symptoms because I have to do something. I have to fill my time instead of just lying in bed, bored beyond belief watching a mind-numbing amount of YouTube videos.
What I wasn’t aware of, though, was the new issues that come with sitting and simply using a mouse to control my computer.
Now, when I sit upright at all, a burning sensation scorches the left side of my neck, spreading down through the flesh towards my shoulder. When I wake up the day after working on this website, the back of both of my arms are also on fire, my right shoulder joint feels like it’s going to explode and I experience immense muscle fatigue, to the point I have to use both aching limbs just to lift and carry the loaf of bread in my cupboard. Even lifting a cup of coffee is difficult and hurts.
My right hand is, predictably, swollen, feeling like it’s been slammed in a car door and my wrists really don’t want to move at all. My hands and wrists were wrecked when I was 20 years-old, before I knew about EDS and I spent the summer working on a factory production line inserting small components into electric circuit boards.
It wasn’t until I was sitting a written exam on my degree and was unable to write the third essay that I knew that job had damaged me physically.
Today like the majority of my days, I should be in bed doing absolutely nothing, not moving at all. I should simply be waiting for the pain to decrease enough for me to…What?
Work on the website again? Restart the whole cycle of relentless pain again?
I dragged my body out of bed a process that always hurts, put the kettle on and took some pain meds, trying to avoid adding Oxycodone and a Fentanyl patch to the mix.
I spent some time online, reading news stories about the UK’s plans for disabled people that are fundamentally flawed in many ways, I shared those stories on my personal social media, writing words about them I doubt anyone will read, then I cried.
I just cried.
Hopeless
I cried because of my pain and the terrifying worsening of my EDS. I cried because that pain renders me unable to do anything to fill my day without causing even more pain.
I cried because of the aggressive, negative and ableist attitude I saw online in comments by people who are lucky enough to not grasp how hard it is to live with illness and disabilities. I cried out of concern over my own financial future should the proposed PIP changes go ahead and I lose my main income.
I cried because I was facing yet another day, alone, not knowing what to do with myself.
I cried because of the deep-rooted loneliness, so strong, I feel it in my bones.
I cried because, as my medical conditions worsen, everything just fees hopeless.
To be totally transparent, when taking my pain
meds, I’m more and
more tempted to
just swallow them all...
I have tried every kind of physiotherapy and pain management technique available to me. I live in Wales where there are no EDS specialists and I’m yet to meet a medical professional who knows as much about the condition as I do.
Besides, facts are facts, and the facts are EDS is curable, it doesn’t respond well to analgesics, it gets worse and, as Professor Rodney Grahame, one of the world’s top EDS specialists told me, my case of EDS is severe.
Very severe.
Professor Grahame, who diagnosed me in 1999, told me my body was one of the most hypermobile bodies he had ever seen.
That’s not an accolade anyone wants, believe me.
Positive
Throughout my life, I have tended to think positively. I still seek to see positivity in the smallest things. Managed to shower and wash my hair? That’s good. Managed to change my bed? Those clean sheets will feel great against my fragile, velvety soft skin tonight.
Recently, however, feeling even a trace of positivity is harder, as being in this body becomes increasingly difficult. To be totally transparent, when taking my pain meds, I’m more and more tempted to just swallow them all…
A few months ago, I saw a doctor, hoping to detail my physical decline and discuss the thoughts I have of euthanising myself.
I developed Epilepsy in 2020. From what I’ve read, it’s often accompanied by depressive thoughts. One of the side effects of my anti-seizure medication is listed as ‘suicidal ideation’.
I told her this. She replied that she doesn’t think that medication is causing these thoughts, telling me to talk to my local Epilepsy service.
I informed her that this service had closed down.
“So, who is caring for you now?” She asked, a slight look of surprise on her otherwise expressionless face.
“I don’t know,” I replied, hoping she’d have the answer. Sadly, I was not shocked that the service’s closure was news to her.
You see, she is a doctor I have long avoided due to her cold, dismissive attitude. When I tried to detail my body’s decline, she kept interrupting and talking over me. She wouldn’t pronounce Ehlers-Danlos correctly and asked me why I wanted to be tested for a certain gene when nothing can be done to change the situation should I have it.
This gene opens bodies with Hypermobile EDS (HEDS) up to the possibility of internal organ and aortic rupture and dissection. I have a son with HEDS who will become a father later this year. Knowing if this gene is in the mix would be useful and important in many ways.
She was equally clueless regarding the local
wheelchair
service.
Her shrugging as she questioned me about the value of the genetic test told me she, despite her EDS ignorance, did not feel the same way.
Additionally to her not knowing who was now responsible for my Epilepsy care and that service’s closure, she was equally clueless regarding the local wheelchair service.
For the last year, I’ve repeatedly asked to be referred to the local wheelchair service for help with my electric wheels. When the chair was delivered six or seven years ago, I told the technician that it was unsuitably hard for my body and I need a softer ride.
"Let’s see how you get on with it,” was the technician’s reply.
Frustrated and seeing my words were going to go unheard, I stopped talking. There was no point in pushing it – pun intended.
But, as I told that person years ago, my electric wheelchair isn’t suitable for my body. When my pain is at its worst and I need it most, it is simply too tough a ride for me to tolerate and it makes me hurt even more.
Several months ago, the wheels on my manual chair needed to be replaced due to the tread being worn away with years of use. I mentioned the issue with my electric wheelchair to the lovely man who came to do the job.
“Let me have a quick look at it, Love,” he said, before bending down to examine its shock absorbers. “I’m not surprised it hurts you. See that?”
I looked at the black tape on the components he pointed to.
“All those bits are colour-coded. That black? That means these are the hardest ones. You need a red or yellow one. I’m surprised they gave you a chair with these one.”
I shook my head.
“Didn’t you tell them it was painful for you?”
“I did. They just didn’t listen to me,” I told him.
He advised me to get a referral to the wheelchair service, then he could sort it out by swopping out these bits for ones that would result in the softer ride I need, and I. Have. Tried.
Just as I tried, again, with the doctor I saw.
The problem is, each request I’ve made for a referral to the service has led to nothing being done and none of the doctors at my local surgery know how to contact the wheelchair service. They didn’t even know its name.
The discompassionate doctor I saw asked if I have the telephone number of the service and suggested I call them myself.
“They told me I need a doctor to refer me,” I stated flatly.
“Oh, well, do you have their address?”
I told her I do not.
“I’m not sure where to find it,” she started fiddling with her mouse as if to run a search for it. “Do you know the name of it?”
And suddenly I saw why, after a year of asking for my GP’s help, nothing had been done. I felt even more defeated. Even more down.
In the end, her response to me telling her about the thoughts I have of ending my existence were met with a shrug, a denial of the possibility my Epilepsy medication is impacting negatively on my psyche and her saying “I think it’s a combination of things.”
No referral for psychological support.
No referral to a Neurologist who might know about my medication and be able to offer me an alternative.
Nothing.
I left her office feeling worse that when I went into it.
Her lack of interest in actually doing her job as a doctor, her coldness and lack of interest in what I had told her, sat in my stomach for a week or so. There was a nagging feeling that something (aside from the obvious issues with her attitude and lack of knowledge) just wasn’t right.
A nagging feeling that wouldn’t go away made me book another appointment with the doctor I usually see. I asked him if she had recorded what I had told her in that appointment.
She hadn’t.
She had not made any notes whatsoever in my medical records. It was as if that consultation with her had never happened.
Had I actually taken my own life, there would have been no record whatsoever of the conversation I’d had with her regarding the thoughts of doing so.
Her decision to not record anything from that appointment breaches more than one rule upon which her license to practice hangs, but I just don’t have the mental energy to report her or do anything about it.
It’s just another example of how this NHS Trust operates unacceptably and reinforced in me that I need to keep on avoiding her, no mater how down and desperate I become.
Lost
Now? Now I’m lost regarding what to do. The one person I would usually have turned to to talk things through died in 2020. I have to speak at the inquest into his death in a few weeks.
Even just writing those words makes me cry – again.
I have been the person others talk to, talk at, and, tired of that, I cut tens of people out of my life after his death. While the shock of his death and my grief were at their highest, those I had listened to still just wanted me to absorb their stresses and sadnesses, giving me no one minute to talk to them.
That was what made me finally see the one-way streets our alleged friendships actually were.
I could no longer be the one who came to their rescue, who lent an ear, who offered them comfort, helped them to feel like they could carry on, when I felt like I was drowning…
Being isolated, stuck at home, unable to work or join clubs and meet new people, means I am pretty much always alone.
I try to not succumb to the negative feelings, the isolation, the loneliness that just keeps growing inside me...
Undoubtedly, this isn’t good for anyone and it means I have nobody to talk to or confide in, which only compounds my negative thoughts and feelings.
The only reasons I’m still here are I have a son I do not want to hurt, a dog who would be bereft without me and I do not yet have enough cash to pay for my own cremation – something I hope to change by winning a legal case against my NHS Trust.
Amid all of this, I do do things to try to cheer myself up. I have scattered wild flower seeds so I can watch them grow into blooms that attract bees and butterflies. I take pleasure from feeding and photographing the birds that visit the garden I have grown over the last seven years.
I take pleasure from taking pictures of beautiful sunsets and staring at the stars on a clear night, grateful to be living in a rural area where they are not washed-out by artificial light…
I sit, knowing it will hurt to do so and, if I can, I write.
It’s difficult, though, when all you have is more and more subluxations and dislocations, increasing pain, immobility, the shadows caused by all this within your own mind and time.
Time to observe society and the growing public hostility towards those of us living with chronic and incurable illnesses and disabilities.
Time to recall the way strangers have shouted at me in the street, saying I don’t need my wheelchairs because I can move my legs, to think about he man who recently called me lazy for using my electric wheelchair to take my tiny dog for a walk.
Time to think of all the ways in which doctors have let you down and made things worse, damaged my fragile body by denying me treatment.
I try.
I try to not recall all the bad things that have happened, that should not have happened, how different my life would be had they not.
I try to not succumb to the negative feelings, the isolation, the loneliness that just keeps growing inside me as my body continues to go downhill and hurt more and more and more…
I keep telling myself I have reasons to just keep going, but when it’s late at night at the end of another day alone, each time I get up in the morning when my pain levels are at their highest...
...the constant hurting and loneliness just keeps driving me down.
