23
Sep, 2022

What is the difference between day and night?

For many sufferers of ME, not a lot!

I find there are two primary difference:

It gets Dark at night and not so much at day time and, there are fewer people at night.

What makes me decide to go to bed?

Lack of anyone to interact with. In short, I get bored.

How do I feel at 2am (as it is now)?

Tired but, no more tired than I felt at any other point. No, that’s not quite true, I do feel more tired but, it’s tired upon tired and I cannot think of a better way to describe that. I sometimes feel this way at 2pm so, it’s not really dictated by the time of day. Feeling this way at 2pm could just as easily happen if I have a week of 7 hour sleeps.

20
Jan, 2022

Covid-19

How totally stupid are the people of the UK who celebrated the news yesterday from Boris Johnson that effectively Covid-19 will be over in the UK next month?

People won’t need to test any more, that they can be positive and as long as they feel able they can then go where they like. Work, cinema, theatre, gym, pubs … absolutely anywhere and that will be totally legal.

Omicron is just one variant. Thankfully, it doesn’t seem to terrible on the vaccinated and the majority of those in intensive care are unvaccinated, more fool them but, just those people are still having a knock on effect for the whole NHS. What if the next variant is the worst of the lot? It turns up in the summer just after we have had everything covid related dismantled here in the UK? We will be unprotected, unprepared.

We are still having issues getting to see our GP. All waiting time expectations have now been dismissed. People waiting on vital treatment are dying because of the extra wait for a bed taken up by someone suffering from Covid-19.

Many ‘routine’ surgeries are cancelled for an indefinite period. These are surgeries, any surgery which is not deemed life saving and that is the majority of what the NHS does now.

As time passes our vaccines become less effective, for many they will just not protect them at all even with the booster and yet, there are no plans to give top ups heading into a period where we just won’t know how safe we are wherever we go.

More people will get sick, need time off work meaning, more of us already waiting months for repairs will wait longer.

The decision about Plan B was meant to be next week. Boris has had an awful week over his ignoring his own laws on covid, he needed to distract the country and it seems to have worked. He has announced with no scientific back up, that Covid-19 will be reduced to endemic status by the end of March at the latest, much sooner if he can arrange it.

The expectation that COVID-19 will become endemic essentially means that the pandemic will not end with the virus disappearing; instead, the optimistic view is that enough people will gain immune protection from vaccination and from natural infection such that there will be less transmission and much less COVID-19-related hospitalization and death, even as the virus continues to circulate.

This all supposes that we all will have that immunity and that also, we know and keep on top of the variants and that our protection, such that it will be, will cover any new variant.

This announcement yesterday has no scientific basis, we are the only country in the world making this decision whilst having one of the highest infection rates. We have over 3.5 million active cases of covid19. Over 700 of those are currently critical. Boris says we are the best in Europe, the only European countries with more daily cases than us are:

Andorra

  • Andorra
  • Gibraltar
  • Montenegro
  • San Marino
  • Slovenia
  • Czechia
  • Faeroe Islands
  • France

Every other country in Europe has fewer daily confirmed cases of covid-19 and most have very similar rates of vaccination and testing as we do. The only other European country with more active cases than us is France. Every other country in Europe is managing better than the UK.

To balance it (by a tiny bit) we are number 7 in Europe for the most critical cases with the following countries having more critical cases than us as of Wednesday this week

  • France 3881
  • Germany 2664
  • Russia 2300
  • Spain 2230
  • Italy 1688
  • Poland 1391
  • UK 703

Is this the picture Johnson is painting of how well we are managing covid?

Not enough evidence yet? Let’s look at Daily Deaths because, if Boris is right, we must have some of the lowest in Europe so, here it with the worst at the top:

  • Russia 698
  • Italy 380
  • Poland 376
  • UK 359

Remember, they are DAILY deaths 2500 a week. If this is the new normal then every year we will lost 130,000+ people to covid and this is us, under control and ready to ditch all our further protection, as things currently stand, that is our new normal whilst other countries are in lock down with better statistics than we have.

I heard on the radio yesterday from people who voted for Boris and said never again after all the lies and parties, how him getting us out of Covid had probably changed their point of view.

God Help us

17
Jul, 2021

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.