Fatty

I am still gaining weight, don’t know what on earth to do about it. I walk so slow it won’t make any difference and I am not really pigging on food. Something has to happen else it won’t be covid-19 which gets me.

Mum

We lost my second mum the other day. I am writing it but still don’t accept it. She was so strong and stubborn.

She was only in her 70’s and as far as we know she fell and hit her head on a sink. This caused a bleed on her brain and despite surgery, she never recovered.

I first met her in 1985 when I started dating Kris (Lorna) who would become my wife the following year. Both mum and dad, the only names I can refer to them as, took me on as their own from the outset. When my own mum died in 1986 just three weeks before our wedding, they were both there for me and I have seen her as my mum ever since despite being divorced since 2001 (I think).

All the kids adored her, she was that sort of lady. She had her little code. If she called you ‘mate’ then this was the inner circle. ‘Dear’ was often a polite acknowledgement. She had her little sayings too which made no sense but we loved her for them. “Leave what you want and eat the rest” being a regular at the dinner table. It actually says just to eat the bits we don’t like but that wasn’t what she meant it to say! TV shows such as “Are you being framed” and such like were always ones to raise an eyebrow and a smile. She could be a stroppy matriarch if she wanted to be too … “It’s my Christmas and I will do it my way” said more than one year at Christmas at our house!

I know I am very sad about it, the kids most certainly are. At a time of self isolation and social distancing it is all the more awful as we have to leave Dad in Essex on his own to deal with it. We’ve offered all the support we can but, realistically, unless he specifically kicks us into action there is sod all we can do.

She will be very much missed.

CFS/Fibromyalgia 

Yes, I know I have mentioned this before but, it doesn’t go away.

Because I cannot control my weight it is fair to say the CFS symptoms are getting worse. I say CFS because this is the diagnosis that I have but, I suspect it should actually be Fibromyalgia

Now, there is an issue with both CFS & Fibromyalgia. Although many women find it difficult to get their diagnosis done and accepted, it is all the tougher for the 10% or so of male sufferers.

US Website gives a notion of this

As well as all the fatigue as shown in the image above, there is a lot more pain involved with Fibromyalgia and I can attest to that from experience.

Some ladies on forums slip up and refer to all members as ‘girls’ and whilst I don’t much care it does show how much the condition is seen as a women only one. On the plus side, whilst shocked that men suffer too, I have never experienced any hostility about it.

I recall when I was raising the kids on my own and the hostility I got from the ladies then who refused to accept that I could possibly ever parent as good as they can, I apparently didn’t have the instincts, didn’t have the strong bond. all absolute rubbish but, that’s prejudice for you … I digress, I have not experienced it amongst sufferers but certainly at my local surgery where they are as close to insulting as it is possible to be without just coming out and saying they think I am lying about it.

I am sure there are some who will pretend to have the condition, she it as a free ride to benefits. Trust me, this is the wrong option if someone wants an easy route to disability benefits! It’s all uphill buster and the evidence has to be overwhelming where as, in reality, it’s often non existent because there is no diagnosis! All anyone can offer is a series of tests proving that the symptoms we say we have don’t show up as anything visible! So, we have to get proof that we are just saying we have something! If a doctor chooses to be one of the old school types they’ll just dismiss the argument as a hypochondriac and that’s that. Of course, at the other end of the scale, once a diagnosis has been made, that’s the end of any chance we have something else because every ailment afterwards is dismissed as part of ‘the condition’.

State Benefits

Yes, benefits! To some everyone who claims is, as the title image suggests, a ‘benefits cheat’ until proven otherwise.

Those on benefits are often seen as the scourge on society and on the bottom rung of the social ladder.

Over the years I have had to claim benefits. For a while back in 1993 I think it was I claimed unemployment benefit. I was advised that I had that wrong. Someone pointed out that the only reason I wasn’t working was because I needed to be at home to take care of disabled children. I needed to actually claim ‘Invalid Care Allowance’ as it was then and top this up with Income Support, Housing benefit and council tax relief. Of course, back in the day council tax relief was at 100% of the amount and there were no deductions to housing benefit based on how many bedrooms a person had.

Did I like being on benefits? Nope, not for one moment!

There is no dignity on receiving benefits. Sure, it’s an insurance payout. We pay into the system and when we need to, we make a claim but because society doesn’t accept it this way, it is just horrible.

One of the first question particularly men get is “What do you do for a living?” There is no good/right answer to that when receiving benefits, it’s always ‘awkward’.

My Experience

Back in the 1990’s the system was a little different to how it is now. We actually had some income from those benefits. We generally had a new car to drive around in too. With careful budgeting we could afford some nice holidays too. All of that causes a lot of bitterness from ‘workers’ who feel that no one on benefits should have a ‘better’ life than they have working. Yeah, in the very simplistic sense that makes sense. I understand the thinking but, it forgets the old familiar line of … ‘Don’t judge a man until you’ve walked a mile in his shoes’. So easily forgotten is the hard graft that caring actually involved. For many and certainly us, it was literally a 24/7 obligation.

The entire family was involved. The eldest was particularly challenging. We never knew when he was going to have a seizure other than ‘every day’ and we never knew when during the day or night so had to be alert. He tuned in perfectly to any friction in the house and became very violent and unmanageable. We learnt never to argue and to bottle everything up. This is not a healthy way to live!

Anyway, all the caring came to a close late 2016 I think it was. I did move onto caring for my best friend Robin for a while and claimed benefits for a while because he really needed support at that time. My income plummeted though. If I didn’t have Sean & Daisy living here then I would have lost everything. This is one of the problems with spending the income on holiday times for the kids when they were growing, nothing left in the bank for my later years. Don’t get me wrong, I spent plenty on me too, it was my coping with life mechanism, not a healthy way to do it.

I worked, came off benefits but realised that the more I tried to do the less I could actually do. My condition was getting steadily more apparent. I loved the professional caring I did but with this condition, I couldn’t do it safely.

I gave up fighting the pointless fight in 2019.

Currently

Right now I am getting base rate ESA, later in the year they’ll do a health assessment and probably reject me for that so the entitlement will run out late autumn.

On top of this I am doing a PiP claim. Was supposed to have a health assessment for that today but they cancelled it. They didn’t tell me they did, they just didn’t call so I called them and discovered they’d cancelled it. I probably won’t get that either. Not many men do get PiP with CFS or Fibromyalgia, as aforementioned, it’s not a mans condition!

Blue Disabled Parking Badge

I finally got one of these the other week and it helps loads.

With the lock down I have barely used it, just three times so far but it has really helped. Not as much as having the scooter but it has been a significant step in the right direction.

I didn’t get it straight off, I had to appeal but they did accept the evidence I submitted which I was grateful for.

The Sunflower Lanyard

Another Godsend to me!

It shows participating organisations that I have a hidden disability. So far, only once has it been properly recognised but boy did it make my life easier! Sainsburys earlier noticed it and gestured me directly into the store bypassing the queue. It was a lovely feeling not to have to beg and explain myself.

This is unlikely to happen this year. We have it all booked for May but the lock down will stop us. We can’t even cancel it yet because we have to wait until our departure date is officially covered. With the UK government renewing things every 3 weeks the current travel restrictions on apply to May 7. We have to wait until then for our dates to be included and get a refund. It’s most annoying because, despite knowing it’s not happening, because we can’t fully cancel it, there still feels like a chance.

This one is booked for August, also looking very unlikely.

We’ve been wanting to go there for around a decade now. Finally made our minds up to go having even bought a car for the occasion and wham! Covid-19 kicks it into touch for us.

I have now gone a very long while without a proper holiday. My last foreign outing was for Zoey’s benefit and all focused on her so, not much of a break there, actually, no break at all.

I am quite desperate to get away from the UK for a bit and escape my everyday for something different. Sure, my abilities are still restricted but at least the sights and smells will be different.

Birthdays

We will have tons of them to catch up on once we get together again! Not quite two weddings and a funeral but that’s what it feels like.

Unwanted Costs

The tumble dryer died on us so had to replace it. Likewise the car battery died and had to replace that. Both together wrote off around £500. As always, could have done without that but worse things happen at sea … quite literally in the current pandemic!

Covid-19

Yeah, it’s damned annoying!

Small Help

I discovered that one of these really helps me get trousers and shorts on. I have been really struggling and not knowing what to do. Not sure yet they will solve the sock issue but I am not overly fussed with that.

Not sure what else I can do to help me. Perhaps a better water heater instead of the kettle. Scared me every time I use that thing in case I drop it. The one I have stops after a cup and a bit for ages. Annoying when I am trying to make two drinks!

Scooter Travels

I need to get out on this more. Am not entirely sure where I can go with it though. We’re supposed to justify where we are heading when we travel. Not entirely sure how many journeys I can justify. Will the police accept me choosing a store which isn’t my closest?

Sainsburys scares the hell out of me. No social distancing at all. It’s like Russian roulette with a virus!

I’d like to give Morrisons a go. I know the scooter can handle it for sure.