‘The Mighty’ is a digital health community, created to empower and connect people facing health challenges and disabilities, and I came across it by accident – but found so much relevant to my own life, that I signed on for regular emails.
The comic strip, further below this, is one such link sent to me to read, and it reflected my life so much, that I really wanted to comment on it here.
The comic strip shows exactly what happens to me every time I try to be ‘normal’, and meet up with a friend for lunch, or try to be a little independent, and attempt to do small chores for myself, etc. It shows the difference in energy used between a healthy person, and someone suffering with an auto-immune illness, and I felt it showed the difference very well.
It really is so very hard to explain to someone who isn’t suffering from a plethora of auto-immune illnesses, just what life is like for us who do 😦
Link to website: The Mighty.com – Comic Strip that explains Chronic Fatigue Syndrome/ME
In honor of myalgic encephalomyelitis (ME)/chronic fatigue syndrome awareness day on May 12, I thought I’d make a comic. When I decided to do this I didn’t quite realize just how long it would take and how many spoons, but hopefully it’s worth it.
To read a transcript, head here.
Introducing Maddie, a girl with ME, who in this episode, “Energy and Exertion,” is meeting her friend, “Normal” Nancy, for coffee.
This blog was originally published on Laura’s Pen
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Just like Maddie in the comic, I suffer with ME, but I also have Fibromyalgia, Lupus, Arthritis, and a plethora of other health problems – plus 2 blood disorders that are really making my already complex health issues even worse. This means, unfortunately, that the physical, and mental, side effects of each of them, affect me even more than just the one problem does Maddie 😦
Like Maddie, I try my best to occasionally meet up with a friend for lunch, or to go into town – even if it’s only to get money out – although I’m unable to travel by Bus, as it became a very painful – and totally exhausting – thing to do years ago.
I don’t get out as much as I’d love to do, but as much as my body allows me to 😦
I can only manage this, though, if a good friend picks me up in her car, and drives me around from place to place – so I can manage to do what I must, without having to constantly walk too far. Then, when I’ve either finished my list, or just run out of energy, she then drives me home again, making sure I get myself, and anything I’ve bought, safely into the house.
If I absolutely MUST go into town for something important, and my friends are unavailable, then I’ll catch a taxi, which I arrange to return for me where I was dropped off, an hour later (because an hour is my absolute limit, especially when on my own)!
If I have to use a taxi, once I get there, I know I will only be able to manage one or two things that I absolutely HAVE to do – plus, I also have to plan the shortest route possible between places I need to visit before my energy runs out, and I need to get back home before I fall down exhausted – so I only do what I absolutely MUST do 😦
I often need to get cash out from my post office which, fortunately, is in the same building as the food shop, where I often need to go to get the items I’ve forgotten to order with my home delivery! (oh, for a brain that didn’t keep forgetting things!). I can normally do this before needing to get home but, if I happen to meet a friend while I’m in town, then I often have to choose between the shopping, or stopping to chat with the friend, as it’s almost always impossible for me to do both – especially if I want to save enough energy to get back home safely, where I can then collapse back into bed, where I’ll spend most of the next few days desperately trying to recover enough to look after myself properly 😦
My life is no different to many thousands of others, here in the UK – and around the world – whose lives are affected so badly by chronic illness, and we all, in one way or another, find it difficult to get across to others who are fit and healthy – or who are physically disabled in a way that doesn’t affect their energy values – the way in which our lives are affected by these awful autoimmune-based illnesses that we have to cope with every single day of our lives.
But I think that the worst aspect of all of this, is the thought that there are no cures for any of the auto-immune problems that so many of us suffer with, especially as they have made it impossible for me to work! This means that I have to rely on Welfare to keep me fed, and homed – in almost every aspect of my life – by a government who are doing everything they can to make life for people like myself a living nightmare 😦
To make matters worse, I lost my wonderful husband in March, and I had to spend the next 3 months going through all the worst aspects of this, while trying to apply for the benefits I needed to live on – it took 12 weeks before they sorted out what I was entitled to and, if it wasn’t for good and kind friends, I don’t know how I would have managed, financially, or emotionally! 😦
It certainly didn’t make my health any easier to cope with when, along with the grief suffered with then – and now – I also had to fill in so many forms, and battle with the DWP to get what I needed to live on – but that’s another story, I guess 😦
I’v just read an article in the Morning Star, and it really reflects the way I felt, and behaved, while going through my changeover from DLA to PIP at the beginning of this year.
To add to the stress and strains, along with paranoia, I was also grieving, which made my mental health so bad, I completely stopped the crochet I love doing, which helps to keep me as relaxed as my pain allows, both physically and mentally.
It took a good 8 months, from the start of my assessment period, for me to get back a, rather fragile at times, peace.
Do follow this link to the article, and see if you’ve had the same experience, too:
The Hellish Ordeal of the DWP Experience
Filed under Benefits, Changes, Crochet, Death, Depression, Disability, Disability Issues, DLA, DWP, Health Issues, Ill Health, PIP, Welfare
Last night I was unable to sleep, because the pain in my body has become unbearable recently, and so I decided to watch a new DVD delivered to me yesterday, in order to get my mind off of the pain for a little while. The DVD is: ‘I, Daniel Blake’.
. . . and now I sit here, many hours later, with red eyes, and cheeks sore from the tears I shed watching it, while trying to put into words what I need to express after seeing it.
I wonder how anyone who has an iota of fellow feeling in them, can watch something like this, and not feel sad, or frustrated, and also totally furious, at our government – and the people they employ – who follow every machiavellian rule they can make up, without thinking of the consequences to the real people they are doing it all to, and I wonder, who can put people through all these kinds of hoops, purely for an ideology that seems to drive them into schemes that are making the poor even poorer – as the rich get ever richer?
Ken Loach’s film has shown so clearly what is happening every single day here in the UK, and it is happening to too many people innocent of the accusations being thrown at them by their own government, as well as by their many right-wing media outlets.
. . . . and I’m one of those people. I, too, am Daniel Blake and, because of the injustices I saw in the film – while knowing they were just characters playing their parts, I also know they were based on real people going through the same, crazy, soul-destroying, routines – I want to tell you what is happening with me at the moment.
I’ve been worried for a couple of years now, about the changeover this government is making, from DLA to PIP, as I’d heard that so many people on Indefinite awards of DLA, like I am, have lost their benefits completely – including people with terminal cancer, or MS, or Parkinsons!
I have, unfortunately, developed many health problems over my life, which had basically starting from a messed up immune system, brought about by the Thalidomide tablets that my Mum took while she was around 6 months pregnant with me, as it was thought the tablet would ease the terrible morning sickness she continuously felt throughout this pregnancy. The tablets actually made Mum worse, so she didn’t take them as long as she might have but, unfortunately, she took them long enough that they affected the development of my immune system and so, although I was so very fortunate to have been born with all of my limbs, I have been prone to bouts of ill health for most of my life, and this gradually worsened, to the point that, right now, everything wrong with me is based on a screwed-up immune system, and everything I suffer with is without a cure, and will only get worse, to the point of death – hence the Indefinite award.
I’m basically 100% housebound, and 95% bedbound, and was eventually sent the changeover form from the DWP, which arrived on 23rd December 2016, asking me to fill it in, and to send it back by 16th January, 2017, at the latest. With what I’ve recently learned about the processes put into place with the new PIP, I’ve no hope that I will get the equivalent of my DLA award with this new PIP award, and will be amazed if I’m fortunate enough to get anything at all.
Due to my illnesses, I have great trouble focusing on anything nowadays, let alone long, and very complicated, forms such as this one was. I sleep more than I’m awake, and the strong pain meds I have to take (or end up screaming with pain), leave me unable to formulate thoughts and ideas in the way that I used to be able to do, before my illnesses got as bad as they are now. I struggle a lot to find the words I need, as my short-term memory is badly affected, too, which makes it very difficult for me to be able to express how I feel, or how my ailments affect me, especially if I’m under any kind of stress – me, the calm, unflappable, total wordsmith, who used to read continuously, and delighted in learning something new every day – until my illnesses took all that away 😦
The day after I received the PIP form, the 24th December, 2016, I received news that my Mum was seriously ill in hospital, and wasn’t expected to live.
As you may imagine, this knocked me for six, especially as I’d only lost my Dad the previous year, and had been too ill to be able to travel the 365 miles between us, to go and pay my last respects to him. Anyway, from the moment I was told about Mum, I spent all the time I was able to, keeping in touch with my siblings, and trying to find out how Mum was – while desperately hoping, and praying, that she would rally – as she had done on previous occasions – but, on 1st January, 2017, Mum slipped away in her sleep and, once again, I faced the fact that I wasn’t well enough to be able to travel to say my goodbyes.
In those 10 days, I’d not been well enough to be able to try and even start to fill in the DLA-PIP form. The stress and grief I felt had seriously affected my already appalling health, and I was unable to think, or to understand, anything written in the form. I’d not been able to get hold of anyone at the DWP to explain my situation to, because I’d received the form the day before christmas eve, and so everyone was now on holiday, and there was nobody available locally to help me with the forms.
On 4th January, I finally managed to get somebody at the DWP, and explained my situation, and was given an extention of 14 days, until 30th January, to give me extra time to get the forms filled in.
A few days later, fortunately for me, our daughter came to visit and, over the next few weeks, she helped me with both my grief at losing Mum and, more importantly for my health, she helped me to fill in the forms, which wasn’t easy even with her help, especially as every question asked on the form made me have to face up to everything I had lost of myself, and the life I used to lead, at a time when grief and loss of my Mum was making me so depressed I could barely cope.
I think that, if the questions I was asked had had any real meaning, it might have been a little easier for me to do, but they were so formulaic, so loaded, so unreal to the life I actually have to live, that I couldn’t relate to them at all, and it took four different people to explain to me what the questions were actually trying to lead me to say, before I realised that they weren’t being asked to help me in any way, but I really felt as if they had been written, even designed, to trip me up in some way – as if I were living a lie, and claiming these benefits unlawfully because, of course, everyone who claims benefits of any sort are lying through their teeth, right? Wrong!
Anyway, with lots of help, the form was filled in, and I stated at the end, written in red, bold, type – in the section asking if there was anything I wanted to tell them, about coming to a face-to-face assessment – that I wished for a Home Assessment, and for this assessment to be recorded. A friend then posted it all off for me, recorded delivery, and I checked online a few days later, and saw that it had been received. I then waited a couple of days, and phoned them up just to check, and reassure myelf, that they had actually got it – they had.
After I sent off the form, I looked through the paperwork again, and saw that, if I wanted a Home Assessment, then I needed a letter from my doctor, to prove that I was ill enough to need this!
I was fortunate that my Doctor was willing to do this for me, as he knows my many limitations well and so, on 6th February, a friend posted his letter for me, which included a cover note of my own, to the DWP then, on the 13th February, I phoned to check that it had arrived. To my horror, they said that it hadn’t, but that I was to ring back in a few days, in case it was waiting to be scanned, then uploaded onto their computer system. I waited another week then, on 22nd February, I phoned the DWP, to be reassured that my doctor’s letter had appeared on their system on the 14th February, which was a huge relief for me.
On that same 22nd February, I had also received a letter from Capita (Capita do the assessments for the DWP in my area), dated 7th February. The letter basically told me that they had received my form, and were now looking at my claim, and that someone would contact me about arranging an assessment for me. I didn’t do anything about it that day, as I was too unwell to cope with any more phone calls then, 2 days later, on 24th February, I had 2 more letters from Capita dropped in my letterbox. The first, dated 13th February, telling me that they had looked at my application for PIP, and that they had arranged an assessment in my nearest large town, 14 miles away, to be done on 2nd March. The 2nd letter, dated 21st February, and also arriving on 24th, was a reminder of the appointment.
I phoned Capita straight away, and explained to the lady who answered that I had just that day received the two letters, and asked her why they had made an appointment away from my home, after I’d already requested a home visit. I explained about the doctor’s letter taking time to be shown on the DWP’s computer, then asked, once again, for a Home Assessment. The lady said straight away, ‘Well, I can cancel this appointment, but you do realise that you are only allowed one cancelation, don’t you?’ I pointed out that I had only just that day received both the letters they had sent me, so hadn’t even known an appointment had already been made – and that I had clearly requested a Home Assessment on my form – but the lady was adamant that this would be the only cancellation I would be allowed, so I had to accept this, and go to the appointment already made for me, or risk having my money stopped immediately I didn’t turn up.
As I had no choice, I had to cancel the appointment, and the lady assured me I would hear from someone within 2-3 days, letting me know when the new appointment would be. While she was on the phone, I made sure to ask her if recording the home assessment was permitted and, after she had gone away to check, she told me it was, but that they would only allow cassette tapes to be used, and that I would have to tape 2 identical copies at the same time, one for me, and one for the assessor. I would be allowed to use ordinary cassette tapes, or even the micro tapes used for dictaphones, but I was not allowed to use any kind of digital recording.
Fortunately, I’d seen this written on a website, so had already bought 2 identical recorders, and the tapes to go with them, so am prepared for that, at least.
I hadn’t heard from Capita by Thursday, 2nd March, so I phoned them to see what was happening. Nothing was happening!
Once again I had to tell the person I spoke to what had already been discussed and, fortunately, he then wrote in my notes that I wished for a Home Assessment – he then promised I’d be hearing, by letter, to let me know the date of the assessment . . .
I’ll be letting you know what happens next . . . .
12-03-17. 3.41 am.
Thought I’d let you know that my home assessment is due on 21st March, at 11.45 am. I just hope that I’m actually awake, and my brain is in working mode when the assessor gets here! 😦