Leave me the F*** alone!

It is absolutely impossible for me to rest, never!

I honestly feel that I am involved with Zoey’s care 24/7, like, anyone can contact me at any time with an absolute screw up of their own making and I will deal with it.

Social Care have made so many screw ups it’s just awkward now. Despite the mess they’ve created it’s still the same people making the mistakes who are running the shit show.

One crap care provider after another, each competing with each other to see which can come up with the biggest bullshit to explain why they’re not managing her.

No one, not a one of them, ever has a clue what might be going wrong, it’s sickening. It’s like they are just not there. Sure, they know about the damage Zoey causes in great detail but, not what is actually upsetting her.

You know, Zoey was previously abused by her carers, years ago now. Sadly, any carer who looks like them seems to be a trigger and yet, because looking like them refers to their colour, she is told to just get over it and she keeps getting these triggers but, their hands are tied as they are not allowed to mention this could be a trigger!

I said to them, if she had been abused by a male carer recently, is it OK to say ‘no male carers’ and the social workers said that, of course, that’s OK!

Let’s look at the definition of the groups which cannot be discriminated against:

Oh dear, apparently, gender is included and, as such, social care cannot discriminate about a man but, they say they can.

I wonder, are there any provisions whereby any of the above can be a factor when engageing somebody to work with a vulnerable adult? I would think that, if social care feel a man can be but, someone non white can, there must be such a provision so, is there any workaround?

There are some instances where patients are discriminatory that should be dealt with differently.

These can be categorised under three headings:

  1. When a patient’s behaviours are linked to an underlying condition or pathology e.g. mental health illness, dementia.
  2. When the behaviour is from a legal guardian of the patient e.g., parent of a child or person who has power of attorney for a patient.
  3. When the characteristic of the healthcare worker will affect the physical and mental wellbeing of a patient e.g. requesting a specific gender for a personal or sensitive care, or psychological treatment.

Apparently, there is something which could be used here but, they cannot use it until they acknowledge the previous abuse. Once that is acknowledged they can then state that because a certain characteristic is likely to be a trigger, those who have that cannot work with Zoey.

The bottom line is, for the second time this week, in the middle of the week I am sorting things out which are the responsibility of others because they either do not want to or, don’t know they should.

Friday afternoon, I have another online MDT. I don’t really feel inclined to attend to be totally honest. By no accident it has been arranged just in time for everyone to go home and enjoy their weekend. It is, therefore, really just a tick box thing, we did it and let’s just cross our fingers and hope nothing happens over the weekend.

Anyway, right now, Zoey is under arrest somewhere in Kettering. Because someone employed by social care said she has capacity they had no interest in whether she might need her LPA, they would deal with everything themselves. The phone call was so short as to be rude. Well done social care for that.

There is no outcome from this which is going to be good for Zoey. Everyone was told to do a proper risk assessment, they didn’t. Same as the last lot and the lot before that. This is crisis managment on top of crisis management.

Were I fit and well, I’d be a lot more affective, just now, I don’t have much left to give.

You don’t have to be religious …

… To work out some things in life just cannot be explained.

When I was a kid, back when I had to run away from dinosaurs and there was no McDonalds or Sainsbury I had some really crazy wishes for a kid growing up on a council estate.

  • I want a 4 bedroom house
  • I want a new car
  • I want children
  • I want to be happy
  • I want to see Disneyland
  • I want to be married

Let me tell you how that worked out:

  • I have a 5 bedroom house
  • I get a new car every three years
  • I have 4 children and 4 grandchildren
  • I am happy
  • I have been to 4 Disney parks (some many times), just two to go!
  • I have been married to a lady, I have been civil partnered to a man, I am now married to a man

Now, what I had in mind as a kid is not how it worked out. To my immature mind I thought we just aspired to something and there would be no cost, there is always a price to pay and those who know me, know some of those prices I have paid.

Every parent says the same “I don’t care what they are as long as they’re healthy”. Well, mine were not healthy, they all have problems, some more than others but, I am grateful for having them. I got the house because not all my kids were healthy. I get a new car because I now am not healthy. I am happy because what I have outweighs what I suffer. The Disney parks, well, they’re just a huge bonus, even I wonder how that happened. Being married, yes, I also got divorced and dissolved (eww) but, that’s OK as we’re still friends. For sure there was a lot of intervention for me to find Dennis, it’s not like our eyes met in the store! He lived 7000+ miles away!

I wrote something earlier, read that:

Sa bata pa kita gisultihan kita nga mosalig nga ang Dios mag-atiman kanato
Samtang nagkadako na kita, ang mga katingad-an nga wala damha nga mga butang mahitabo
Mga butang nga dili nato mapasabot sa bisan unsang paagi gawas sa, nangutana ko sa Diyos ug nahitabo ra.
Samtang kita adunay mga anak, ang Dios nagbilin kanato sa pagpadayon niini
(Kinahanglan naton ang responsibilidad sa usa ka butang)
Samtang sila nagtubo siya mibalik ug diin kita nagkinahanglan kaniya, siya anaa.
Sa panahon nga kita moretiro na ug modawat sa pagka senior
Makataronganon ang kinabuhi
Atong naamgohan nga ang mga importanteng butang sa kinabuhi atong naangkon.
Nasayud kita nga gibayran nato ang bili sa Dios alang niadtong mga butanga ug, OK ra.
Nakakat-on mi nga magmapainubsanon.
Nakakat-on kami nga magmapasalamaton.
Ang akong nahibal-an labaw sa tanan mao
Kung kita naghunahuna nga ang Dios maghatag sa atong kinabuhi sa mga ganti
Sayop mi.
Ang iyang gibuhat dili kaayo klaro apan kini mahitabo.
Dili perpekto ang kinabuhi pero, nakakat-on ta gikan niana.
Usahay ang kinabuhi lisud, kini makalilisang, kini makalilisang
Naglisod mi
Kita makakat-on gikan niana
Unya kita molingi ug, ang atong kinabuhi mao ang kinabuhi nga atong gipangayo.
Bisan kinsa nga naghunahuna nga ang Dios walay bahin
Nagtuo ko nga mahimo nimong gimingaw ang usa ka daghan sa dalan!

When we are young we are told to trust that God will take care of us

As we get a little older, strange unexpected things happen

Things we cannot explain any way other than, I asked God and it just happened.

As we have children God leaves us to get on with it

(We have to take responsibility for something)

As they grow he steps back in and where we need him, he is there.

By the time we get to retire and accept being a senior

Life makes sense

We realise that the important things in life we got.

We know that we paid God’s price for those things and, it’s OK.

We learnt to be humble.

We learnt to be grateful.

What I know more than anything is

If we think God is going to pave our life with rewards

We are wrong.

What he does is never so obvious but it does happen.

Life will not be perfect but, we learn from that.

Sometimes life is hard, it’s awful, it’s terrible

We struggle

We learn from that

Then we look back and, our life is the life we asked for.

Anyone who thinks God played no part

I think you may have missed an awful lot along the way!

Things I know.

  • If there is no God, how can there be an afterlife and, I know there is because I have witnessed it. I saw my granddad after he died, clear as day, when my mum was alive she told me that her old landlady promised that when she died she would make something move which didn’t usually move and they would then know, she was OK. Soon after her death a hot water bottle hanging on the wall, moved. When my mum died, before I knew she was dead, weird stuff happened. She was in hospital, I didn’t even know she was that ill. Her crutch which had stood at the top of the stairs fell over. I went to pick it up and her dressing gown fell off the door behind me and on a door I had not walked past. Those delays forced me to stay home an extra few minutes at which time the phone rang to tell me to get to the hospital. She had died just before they called me.
  • I overdid it with two of the children back in the 1980’s. We walked too far, I mean, miles further than we should and ended up on the wrong beach in Spain, the one which had no way to get back and it was really hot. I could see no way of getting back so I did a hail Mary, well, in the non religious sense and I prayed. Within a few moments a very random Spanish lady who spoke little English approached me and asked, was I OK. I don’t know how much she understood but she gestured for us to follow. She squeezed us into a tiny little car with her kids and drove us back into town and then drove off before we could say thank you. Intervention of a divine nature? I choose to believe that, yes.

There have been many similar experienced throughout my life. Everything I ever asked for I got. I say God has a wicked sense of humour because he did. This would be an example and a tiny one. I ask for a lottery win and, low and behold, I win the lottery. Sure, it’s £1.75 but I wasn’t specific!

I always wanted to be different, right from as long as I can recall. My questions were answered years later. I was gay, I was mostly deaf, my eyesight is shite, I was born with really short legs, my teeth have always been terrible. So, yes, my feeling was correct and I am different. Perhaps I shouldn’t have wished to be because, this isn’t what I meant when I asked to be different.

I am no bible basher. I have no respect for any organised religion, absolutely none. I honestly believe they are all power hungry, dangerous and corrupt. But, just because they created their own version of things doesn’t mean that the basic of those things are wrong. What they are based on was pure. Things like us all being God’s children, us all being in his image and created equally.

None of those things sit at all well with my being condemned to hell for being gay. Nothing pure demands me to show pure devotion to the organisation with gifts of money.

No, I believe in the pure being, that the church is all around us, freely created. That we can speak freely, there are no rules on how to speak to God.

You know what? I also believe that we are here for a reason, we are here to learn to be better, to live a life we do not understand or accept. The homophobe must live life as a gay man before he can be reconsidered entry to eternity. The murdered must live life experiencing tragic loss … indeed, until we understand how to be good people without prejudice, we just keep living one life after another until we finally get it. I think I might still have a few more to go as I know I still have some prejudices I need to resolve.

Anyway, until than, thanks for reading

PEM

Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

I have been suffering for a few weeks now and I am hoping that this week I can get myself back to some sort of pacing. Sadly, unless I want to risk something going horribly wrong, I am going to have to say no a lot more often.

Ah, but, I hear you say, you just need to push through it.

That is precisely my problem, I keep trying that. The results of stupidly trying to push through knowing that this very act makes matters significantly worse astounds me and yet, that is what I have been doing.

Do you know what it feels like to forget your address? I have lived here over 20 years and I just couldn’t remember it. I was totally relaxed, not stressed at all and my brain just wouldn’t go there. That is a result of pushing through. It’s scary, it feels how dementia must feel. It’s not just a moment of blankness, it took me many minutes, too many minutes using a process of elimination before I got it close enough, it still wasn’t quite there but it was near to it!

Driving knowing I am too tired, that I am not at all alert and having to push through to get from A to B. That is mega scary. Planning a trip around a nap break. Not because I didn’t sleep at all, just because it didn’t work.

By exercising we are not referring here to going for a run or even a walk. It can be something like doing household chores, even feeding the cat! Mostly the above chart is spot on. It’s all very depressing in nature but, it is what this condition feels like and it’s not imagined.

Having too many days when waking up feels exactly the same as heading to bed, nothing has changes apart from some missing hours. Knowing that last night I went to bed feeling like this but somehow, I got to get through this day feeling how I felt last night!

Pleasure being measured by the possibility of just sleeping. Getting into bed, putting the phone too far away to hear, no alarm clock, no deadline, just resting.

The absolute madness of seeing a call come in on my mobile and knowing that the very action of taking that call is going to ruin every plan I had for the day. Trying to stay cool and not get mad at them when right there and then I just wish they’d left me alone. It’s always wanting me to do something, ideally now. So rarely do I get a call where someone just says “fancy a coffee, my treat”.

Even when I am given help I hear through the grapevine that they felt compelled to do them, like I am some great burden. It’s just so amazing when someone does something for me which makes my life better, no complaints, no reluctance, just doing it ‘because’.

Just writing this I feel my mind shutting down. Typing is more difficult as I go, more mistakes. I lose words. I start of typing and cannot think of the next word or anything like it. I feel what I want to write but the words just won’t come to me.

In the diagram above it goes a little understated or, over emphasise on quite hefty activities. It seems to imply that a sufferer going about their normal daily tasks or work and social suffer. This is way more basic than that. Just making breakfast cereal in the morning can render me unfit to drive. I know this and tend to avoid eating when I know I have to drive. As for the blue section, most are such radical events. I can get exhausted just by an attitude someone gives me, anything negative at all. It’s not realistic to expect constant adoration and praise but, all too often I feel I am being got at, used even just by the vibes I pick up that I am just too much effort.

Tomorrow I have a couple of things I need to do, I might even trim those down a little. Thursday I just have to get Dennis to and from work. I need to force myself to sleep at the other times.

I saw a shocking picture of a friend being treated for a very noticeable condition. I know they are getting shit tons of support (rightly so) and just sometimes I think to myself, why can’t people just see what I am going through here?