‘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 😦