The Lost Years by Leanne Swift.
So, I have M.E. but you probably wouldn’t have a clue there was anything wrong if you see me out and about.
I’m good at hiding it, and make up hides the grey pallor when I’m in pain as well as the bags under the eyes. I’m also stubborn and don’t want people to coddle me, so I tend to not complain.
In fact, only those closest to me that I really trust would know there’s anything serious going on.
I was diagnosed about four and half years ago. It came after a bout of food poisoning, I just never seemed to fully recover from the extreme fatigue.
Eventually after pushing through for a couple months (because there was nothing obviously causing the tiredness) I ended up sleeping all the time.
I wasn’t working, I was getting palpitations, I was in excruciating pain constantly, pain killers did nothing to help, my memory was shocking, concentration virtually zero and I even struggled to talk coherently at times.
When it got to its worst I had hallucinations that nearly caused me to crash my car…. That’s when I knew this really wasn’t normal and went straight to the doctors. This was beyond exhaustion.
After a lot of tests to eliminate many conditions and a referral to the local NHS M.E. service I was finally diagnosed. It was a relief to know this was real and what it was, but heartbreaking because there was no cure…. My life was never the same again.
After 10months off work and much support from my then partner, the M.E. hospital service and GP’s, I had learnt to pace. I’d built up some strength and energy, I was hopeful I would get back to normal and work full-time.
I had been declined Personal Independence Payment (PIP), so I obviously wasn’t that sick, and after all, this was just me being tired, I could fight through that, or so I thought.
Sadly, after months of very slowly building up, starting at just a couple hours once a week at work and then increasing it to 16hours a week; it became apparent that was my new limit, I needed a whole rest day after doing a morning shift.
A morning’s work left me so wiped out I struggled to get out of bed. At that time only my partner knew the truth of the struggle, to everyone else I was OK. I put on a face and pretended I was good. It was lonely, heartbreaking and led to depression. The truth that this was a chronic illness was finally hitting home.
The biggest problem became finance. I am currently working 16 hours a week, while I get a small top up to my wages from Universal Credit, I’m not entitled to any other disability related benefits because apparently I do not qualify.
This means my income is incredibly low. I can’t afford a place of my own, council housing is not readily available, and so I house share. That has its own challenges and where I live isn’t ideal; it’s a big house and I have to help maintain it.
Living with ME
I regularly have days when I can’t even shower because the fatigue is so bad. I just about manage to grab food, often pre-made food I’ve brought such as soup and ready meals, and then I have to stay with my feet up in bed, or I get swollen ankles.
It hurts to be upright for too long and even watching TV can wear me out. And yet, I’m one of the lucky ones. I have good days and manage to hold down a job, and I’m grateful for that.
Another battle is the knowledge that people are thinking that this is just laziness, that I’m just a bit tired; we all get tired after all. Some people even think I’m making this up. That hurts, mostly because I want nothing more than to be OK, I want to work so I can afford holidays, a nicer car, my own home.
But I just can’t. The physical impact of work is severe, I just don’t shout about it. Depression is a real part of living with this condition and anxiety as well, especially as when I catch a virus, or get a chest infection it can be so debilitating.
I’m always worrying, pre-planning to the nth degree, trying to figure out if it’s safe to go somewhere in case I can’t cope or risk catching a bug. This slightest Illness can put me back to square one of being bed bound.
This fact became only too apparent recently when I went down with a flu-like virus, that led to a chest infection. I struggled to breathe, and I was not coping. I was sleeping all day, unable to get myself food or to sit up.
I was saved by a lovely friend at church whose daughter also has M.E. She had me to stay and for two whole weeks got me food and let me sleep and made sure I had lifts to appointments.
It was the first time I’d had someone other than my ex-partner understand what this illness was really like.
That virus caused me to be off work for two and a half months. My employer is phenomenally supportive, and I’ve now gone back on a phased return. After one morning back, I’m now in bed having been awake 4 hours but unable to get up. My legs feel like lead, my head hurts and moving feels like it’s sapping the life out of me.
But I made it back and I know after a rest day it will be a little bit better at least, I have hope and it feels like there is some energy now that I can use. It’s hard to explain if you have never had M.E. just what having zero energy really feels like.
Yet here I am, blessed to have a few very good and dear friends who support and encourage me and offer help when needed; lucky to have an employer flexible enough and supportive enough I can hold down a part-time job.
I’m also extremely fortunate that my GP understands this condition. Many people aren’t that lucky, and their doctors don’t even believe they’re really sick.. There’s still so much prejudice against people with M.E. in the medical community.
I’ve just been awarded a blue badge for the car, a little thing that will make a huge difference (even if I have to deal with judgemental people). I am living life as best I can. It sucks, it’s draining, there’s never a day I feel like I have slept well, I’m still always in pain and often can’t recall simple words.
But I am one of the lucky ones. I can still do so much compared to others with this condition and that is why I will always be trying to raise awareness of this life changing, life limiting illness called M.E.
Covid-19 and Self-isolation
I’m used to being alone and not doing much or going anywhere, but at least normally friends can visit freely and I can make it out for coffee and a chat and of course I can manage to work part-time.
Work alone brings such a sense of purpose and achievement as anyone with M.E. who can work, will tell you. Being able to go out and earn even a part-time wage brings so much independence and self-worth.
And then there’s church. My faith is a huge part of my life, it’s where I get the hope and strength to fight each day and carry on despite the symptoms of my illnesses.
But now there is Covid-19, and because of my brittle Asthma and M.E. I’m in isolation.
This isn’t normal isolation though, this is no going out, no company coming over, no physical contact, and it’s tough.
At the time of writing I am only on day two of isolation and I’m already realising what that’s going to mean.
The stress of planning to get food and essential errands completed, has left me wiped out and there’s going to be nobody to come over to help or give me a hug when I’m feeling downright awful.
There’s going to be no church meetings, I can’t work, but I’m one of the lucky ones and I’m still being paid… but it’ll be the basic rate, no extra hours or way to earn a little extra. So, for the foreseeable future my income is going to be even less than my normal low rate.
Worse though is the fear of getting this nasty coronavirus. I know if I get it I could be in serious trouble, especially with the Asthma, but even with M.E., getting such a serious virus could spell the end of being able to work, and that I would really hate.
Trying to keep rational is tiring, so I’m isolating, washing hands, cleaning like crazy when I have enough energy, crashing straight after, ending up in bed, but trying to remain positive.
Distraction is going to be key. I have some simple craft and colouring lined up, I have movies and TV to stream, some easy-to-read books and, most crucially, social media and messaging to keep in contact with friends and family.
Already social media is proving to be a big help and encouragement. I don’t know how I’m going to feel by week 3 or 4 but at this point like everyone else, I’ll take each day as it comes!
My advice would be to order your medication in good time, there are services that post to your door (I use them and they’re a God send!).
Don’t be afraid to ask for help shopping – there are amazing groups of people locally setting up to do just this for the vulnerable, and friends really do want to help if they’re able.
Take each day as it comes and do what makes you happy, but most of all stay connected – use Facebook, texts, emails and phone calls – we all need that contact.
ME Awareness Month – May 2020
The Lost Years
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
ME Association Registered Charity Number 801279