Category: Health

If it isn’t about M.E./CFS then it’s one of those other health issues I want to talk about.

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Mental Health, Disability & Competition

Why Competition?

I say competition because, very often this is how it feels.

One person says: “I’m feeling so bad today”

Next person says:

“Tell me about it, you’ve no idea how bad I am feeling”

The second person has totally dismissed the feelings and honesty of the first.

The second person probably does feel bad but, do they have the right to dismiss the first?

What if, no matter what it is which affects person one, person two always tries to trump it?

I find this in my own life. I know what I have wrong and, because generally speaking it’s invisible, I don’t like to detail it. It has been my experience that it is dismissed with some of those around me treating me like I am looking for an excuse.

Diagnosis

Another issue is that I do not really have a diagnosis. I’ve a broad idea of what it is wrong but there is no acceptable label. It is much like when the kids were young and I was trying to get services for the disabled ones. Their lack of labels slammed so many doors in my face. I’d be confronted by parents of ‘Downs’ kids or ‘autistic kids’ and they’d be quite matter of fact over the amount of support they got. This charity did this for them, that charity bought them this and then there was me with two very difficult to manage kids having to fight for every tiny little bit of help.

This is where I am now. 

I’ve suffered with mental health issues since 1992. It was a crazy trigger, more of that straw on the back of a camel I think. A simple road accident, a potentially very serious one but, long term damage was minimal, let’s explore what the other knows straws were

History

As long as I can remember I felt different. I could never quite understand how or why I just knew that I had zero confidence, was scared of my own shadow and felt unsafe, like I wasn’t really wanted much. I think mum was probably OK, nan and auntie Jessie (neighbour) but the men of the family, tolerated me at best.

I was totally disinterested in any form of sport and completely non competitive. All the ‘men’ in the family were captains of teams and watched sport on TV, went straight to the back pages of the newspaper. 

I, on the other hand, just wanted to play with my model cars.

In puberty I had one friend, ironically, also mad keen on sport but he was also a bit bonkers and into other things which interested me so, we got along. 

There are significant memories I have which stick with me and make me feel uncomfortable. Being made to play games with my sister and her friends before puberty, on one occasion being made to get my penis out to show her friends on the doorstep. During puberty I had no privacy at all, zero. My sister used to walk through my bedroom to get to her room. If I spent what was considered to be ‘too long’ in the bathroom I’d be told to get out so, a very repressed puberty.

I tried especially hard to conform to what was normal by chatting to girls but, I didn’t have a clue or, really, any feelings to want to.

By around age 15 I was very aware I was attracted to my own gender with no opportunity to explore it.

Inevitably I got married in 1986 at 23.

Just before that and I do mean just … mum died suddenly. Apparently, I was the only one who didn’t know she was going to die, the implication being, I was too stupid to understand such things. The year before that, I worked out my dad was having an affair with his sister in law and he told me to keep it secret, a promise I refused to keep. I said if mum asked I’d answer the questions she asked honestly, she asked.

They put mum through some emotional torture in what I still consider to be a way of easing their own guilt. I got caught up in the mess. Wanting to stay loyal to my mum, wanting nothing to do with my dad and moving on but, mum insisted I maintain contact. I always considered this the wrong thing to do but didn’t want to argue with mum. It was the wrong thing to do because, when this happened the story in the family was that I was rubbing my mums face in it by visiting my dad! Mum, I know, tried to correct it but, once an opinion has been reached in a family or anywhere else, the damage is done.

This still happens to this day. Someone will tell someone else their opinion of me, just venting but, never update who they told so I now have people all over the place who only ever hear negatives about me. I cannot put it right and those who could don’t want to lose face by admitting the stories were, being generous, not entirely factual.

More Recently

Someone in the household got themselves involved with the king of bull, he’d say anything to get what he was after or, to isolate people from each other he didn’t want speaking in order that very few knew the whole picture he was getting up to. There are a great many lies about me out there now did all manner of damage one of which being how I sexually assaulted him. There was no shortage of gossipers all too ready to share that lie!

I tried to do the right thing and support vulnerable men from 1995 onwards and then made a dumb decision in 2001 to make a documentary. What followed was years of abuse locally, no one in the family was safe and the police actively assisted the abusers with their homophobia either because they were homophobic themselves or because it was just easier. Eventually, we had to move.

None of this has helped me with the mental health issues. It’s always there and i have to work incredibly hard to control it. Many times I have prayed to God not to let me wake up the next morning as I have had enough,

Couple years back, before lockdown, I got scammed by cowboys, travellers who charged me over £3000 to do the garden who trashed it. I won in court which cost me even more but, likely I’ll not see the money back.

So many things in life have left me feeling like a victim. One form of abuse after another. Every lie, every exaggeration of a truth is abuse. Every well meaning person getting involved with half of a story telling me I am wrong, is abuse.

Each time my own health is ignored or glossed over, it’s abuse. When I am told to rest and others insist I carry on as usual, that’s abuse.

All this is emotional abuse and I have had it for over half a century. 

So many promises to me get easily broken by those who would seek out support when it happened to them. I am, seemingly, the least important, the bottom of any list the one needed when I am needed but, not if I am not.

I imagined that I’d get to a certain age, an age I can recall grandparents getting, when the respect would be there, when the love would be shown by others wanting to make my life just a little easier but, it’s really not happening. I still feel like I have to pay for everything and still then, it’s not enough. I either have to pay in praise for a job well done, compensate some other way for the effort or just wait an indefinite period until nothing, nothing at all gets in the way which they will consider more important than me.

To see how others treat me I’d excuse anyone for believing I’d been an absolute dick my entire life but, though some have been told that has been me, in truth, I have not been.

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NHS, very poorly indeed

I am not old enough to remember the NHS at inception but had a lot of experience of it during the 1960-70’s. There was one surgery where I had waited about a year for but that was seen as very exceptional at the time. Mostly my procedures were done within weeks or months of need. Several times I’d barely wait for a consultant appointment and this was at a time when the NHS had huge pressures by virtue of such now obsolete practises.

Never was I an inpatient for less than 2 weeks regardless of the procedure. A week of assessment prior to surgery and a week of recovery for normal for me.

My GP was certainly a different experience to today. He knew us, we knew him. This was in Dagenham, not a small place by any means but, we had the one doctor. We didn’t have appointments, we went when we were sick and we were seen the same day after a fair wait. Sometimes a half hour, others a couple hours. Several times I was direct to the hospital.

Wind forward and a decade or so back the ethos of the NHS was still in place, ‘Free at the point of need’. I mean, it really was. I say that, up until the Conservative (Thatcher) government of 1979, it had remained at 20p for much of the decade and then had year on year above inflation increases. Had it just been kept to inflation then we would now pay just £1.03 per item. Currently we are at £9.35 per item. If we reversed that trend then in 1979 we would have been paying £1.77 rather than that 20p!

Moving forward, and this is not political, it’s the facts of the time. Since the Labour party lost power in 2010 (11 years) funding in real terms and allowing for inflation has been cut over and over. Countless hospitals have been placed in special measures. Despite a range of targets, wait times have continued to rise in recent years prior to the pandemic. Staff retention has been low because of poor working conditions and low pay.

As such, the NHS has not been able to deal with both the pandemic and standard health issues. As such, many thousands have died waiting on treatment they would otherwise have got in good time. Cancer patients for example have died on waiting lists as under resourced hospitals have been forced to move over to emergency care for Covid patients. Despite opening hospitals at the start of the pandemic, the Nightingales, these were barely touched at all because there was not the staff to operate them.

A whole host of terrible political decisions over the last decade or so has directly and indirectly caused the deaths of thousands who should not have died, who, had measures been in place previously agreed in contingency planning meetings, they’d have continued to get routine treatments whilst the covid patients got the care they needed with medics wearing the correct PPE using available ventilators we were supposed to already have in reserve for just such an event.

Where are we now?

The reality for many if that they cannot see a doctor of any kind at all for anything other than a life threatening condition. Most routine surgeries are on indefinite hold. Many hospital appointments are seeing patients waiting months for a telephone appointment only to then go on another waiting list for several more months for just the slight hope of treatment.

Prior to the pandemic, GP surgeries and hospitals were given a list of treatments and surgical procedures the NHS would not fund, patients were told to go private.

I personally have experience of some of these:

A growth on the eyelid which gives blurred vision on the one remaining OK eye (still a high prescription) is seen as cosmetic and no longer available on the NHS

Vitamin D, prescribed by a GP as an essential supplement, is again, not something the NHS will fund and patients have to buy it themselves even though, not having it is likely to cause further complications in the years ahead.

A painful growth on the hand making all sort of things difficult is not life threatening and I’ve to wait many months just to get an ultrasound before it can be diagnosed.

A frozen shoulder has so far been left all of 2021 awaiting steroid injections after which the consultant expects I will need surgery but that too would be many months away.

All too often now the ethos of the NHS, the slogan which sold it, is dismissed as the NHS gets less and less funding and more of it is reassigned to the private sector.

I can see a point over the next decade when the government of the day declares the NHS to be too broken and invites in a higher level of private care with the NHS only available to those means tested to receive it.