Saturday 3rd February
Hi everyone, I’ve not been too active this last week. The cold weather hasn’t helped as it definitely makes symptoms worse for me. On top of that, the general stresses of a not so easy life and doing too much while you feel you can has wiped me out.
The most part of this week has been spent in lounge pants and a dressing gown and watching Netflix and Amazon Prime.
Even just making making a cup of coffee, at times, has felt like a big task. Sweeping the floor sounded easy but quite literally floored me.
The Fatigue has definitely been worse than the pain has been.
The ‘Fibro fog’ too has played a major part too from the silly things we often do, like after making breakfast you put the cereal in the fridge and the milk in the kitchen cupboard and other equally ridiculous, but laughable, things we think only happens to us until we mention and realise we’re aren’t alone in doing these things.
But then there’s the not so funny side of fog. The memory loss, Being unable to keep in new information, That said when it comes to watching films and series on TV it’s like the first time every time.
Trying to have a simple conversation but finding that the words you use all the time have suddenly decided to play hide and seek. Every simple word you know is only ever allowed to get to the tip of your tongue.
I’ve changed sentences and even whole paragraphs before now as I can’t think of what I’m trying to say or think of the particular word.
Yesterday (Friday 2nd) was a particularly busy day. It usually is so I try to rest more on Thursdays. Friday is the day the local fibro and chronic illness group meet up at a local pub that opens up early for us and opens the kitchen to prepare breakfast items and drinks for us. I don’t always manage to get to every meeting but like to think I get to most of them.
It’s a great group and members including myself have managed to get back a social life. One lady even started driving again. A lot of the members really look forward to meeting up. Most have said it’s improved their life.
There’s no real structure to the meetings. It’s a means to get together and support each other that way.
The meeting has been labelled as ‘coffee moaning’ even though there’s not really any moaning. That runs from 10:00-12:00am. But can run until 2pm in the summertime.
After that was the job centre to sign on. I have to do this fortnightly now. It was weekly but as I do as they tell me they consider me a good boy and rewarded me. I was on Employment and Support Allowance (ESA) money if you can’t work because of illness or disability. A benefit provided in the UK by the Department of Work and Pensions (DWP)
I was in the work related group however I was asking to be moved into the support group. And they sent me an appointment for a face to face assessment. I previously scored 18 points meaning I fit the criteria and was able to claim this benefit. I’ve been on it for almost five years.
I know how these assessments go so I asked for it to be recorded and it was. I received a copy and they kept one. Turned out the equipment supplied by the DWP was in fact faulty and didn’t record anything at all.
I was relying on this as my memory is so bad and because I know you answer the questions but they don’t always write the answer you gave. Long story short they gave me zero points!
They took the benefit from me which in turn meant the council stopped paying my cut of the rent. I suddenly lost about 50% of my total income.
I should mention that the DWP are, and have been, for almost five years awarding me a benefit called PIP
Personal Independence Payment (PIP) is money for people who have extra care needs or mobility needs as a result of a disability.
As I was getting ESA and PIP this entitled me to another two benefits. Without sifting through paperwork I just can’t recall what they’re called right now but something along the lines of carer allowance and severe disability allowance.
So the DWP still award me PIP and two other benefits which are all for disabled people but when questioned why don’t the DWP use this information they have to verify the person is in fact disabled and unable to work because of this and therefore entitled to ESA. But the DWP state it’s two separate entities even though they’re all run by the DWP.
Imagine us as human beings trying to explain that away as easily as they do. “We write the rules, we don’t have to stick to them” that’s the mentality that comes across. Anyway where was I? Oh yes, the job centre.
I was able to transition from ESA to Jobseeker’s Allowance (JSA), which is an unemployment benefit you can claim while looking for work. The thing about this is I can’t work. It’s not just the fibro and its symptoms it’s the other things I have too.
And the medication I take, particularly morphine, would leave me operating under the use of drugs. It’s not safe. I won’t drive on morphine. I was retired from work due to disability. And I’ve got worse since then not better.
Another thing that should be taken into account is not just the medication you’re on but the dosage too. One look at my prescription should immediately stand out and in all likelihood it would be very unreasonable to expect someone like this to not only hold down a job but wouldn’t be safe doing it.
So I jump the hoops so they can tick boxes. I look at jobs and make online notes and give reasons why it’s not suitable for me. If I’m ever given an interview I have to decline and state why. It’s a complete waste of everyone’s time and money.
I did ask for a mandatory reconsideration but it was denied. I now have to go to a tribunal which I’m already not looking forward to. I need to go to my doctor and get a letter from him stating my illnesses etc and hopefully a statement from him regarding why I can’t possibly work anymore.
After that I had an hour to kill so I went home to relax with a coffee. And then went to view a couple of houses. Neither were suitable. I returned home, shattered.
So that was my Friday! Today has been spent 50/50 between resting and housework. It’s now 16:30 and the house is clean and tidy. I do feel tired but not too bad. Time to put my feet up and chill with the cats.
Thanks for reading and hopefully more posts to follow now I don’t feel so crappy! For now at least.