Last year I was invited by the Cabinet Office Disability Unit to write about my experiences with ME/CFS. Unfortunately, because of the pandemic, it wasn't published. But we featured it in ME Essential – the member’s magazine – last Christmas.
We are often asked to share stories from people that have improved and that offer realistic hope. From the reception my story received, I think it struck a chord with members and I hope it will with you too.
It took a long time for me to see any meaningful improvement that could be sustained. Everything I do now is relative to how I was before and I am always conscious of the possibility that I could relapse. Being able to work full-time from home, even with a lot of support around me, was a dream I never thought could be achieved – let alone maintained.
But I’m in my 5th year of employment with the ME Association – having started with some volunteering and then project work part-time – and despite the expected set-backs that affect my working ability at times, I am very pleased with the progress I have made.
Of course, if I had written my story 10 or 20 years ago it would have been quite different. But I hope my perspective now is as helpful as it would have been then.
If you do have a story you’d like to share, then please get in touch: Feedback@meassociation.org.uk. We are very happy to consider contributions and will maintain anonymity if you request it. Photographs are welcome but not always necessary, and your story could be featured in ME Essential and/or ME Medical magazine, and on this website blog.
Take good care
MEA Communications Manager
We have made a downloadable PDF of both parts of this article.
My name is Russell Fleming. I am 52 years old and recently began working full-time from home on a flexible basis as Communications Manager for the ME Association (MEA). I had previously volunteered for the charity and then worked part-time after being involved with them for over ten years.
The MEA is a relatively small medical charity but one that always manages to punch above its weight, providing information and vital support to people with myalgic encephalomyelitis (ME/CFS) in the UK. It also campaigns, conducts medical education initiatives, and invests in biomedical research.
I am in a fortunate position despite it taking me so long to reach this point. I have finally been able to accept, adapt, and accommodate ME/CFS, but it took 22 years, a lot of heartache, and many false-dawns, before my symptoms began to stabilise and then slowly improve and I could once again feel more confident in my abilities.
Last year I moved into my first real home (albeit a rented one) and have benefitted greatly from having a garden. The lift to my spirits has been both welcome and unexpected. I had always wanted to own a dog and be able to care for him myself. It’s still a work in progress, but ‘Buster’ is proving to be a good companion and has made me realise just how alone I had become. He is now four months old and has brought a lot of joy back into my life.
In terms of symptoms, it is my cognitive function that has improved the most. I have learned to use prompts, reminders, and alarms to aid memory. I still can’t read for long and I have to limit the time spent on certain tasks – like when and how I attend virtual meetings – but for the most part I have learnt to manage it well and it is this improvement that has allowed a return to work.
I find that listening and remaining focused to still be challenging and I take more time to write well, spell correctly, or to speak clearly, but working online for the most part and using a computer is helpful.
I am still restricted in what I can accomplish, how long I can work without a rest, and the kind of work I can do, but I feel very lucky to have gotten this far and to have an employer who understands.
Mobility remains a problem and I can’t walk very far or climb the stairs without support. Taking a shower or washing my hair is a challenge and I average a shower a fortnight, relying on ‘bed-bath wipes’ (which can be heated in a microwave) for bodywashes in between.
I still experience disturbed sleep with night-terrors, vivid dreams, fevered sweats, and I wake feeling unrefreshed – usually after only a few hours. I went through a particularly bad few years more recently when I was frequently urinating while asleep – that led to a big increase in laundry – and while this is a part of my life now, it has also improved.
I need to rest and sleep several times a day when the exhaustion or other symptoms become too much. I tend to start work early in the morning, when sleep has evaded me, and if my head is clear, then finish before lunchtime or when I can’t do anymore.
Pain is widespread and constant particularly in my muscles and head. I am easily exhausted and fatigue is ever present. I can’t regulate temperature properly and feel very hot or very cold particularly in the arms and legs. It has always felt like I have the Flu but without a runny-nose and I find myself having to judge if, when, and how I can do things with the limited amount of energy available.
After about 10 years, there were improvements in other symptoms. The vertigo, dizziness, palpitations, nausea, diarrhoea, and poor appetite stabilised. I still can’t do many household chores for myself and am unable to engage fully in social activities or go on holiday, but I have a very good support system now in place.
I had a lot of problems with mental health – depression, suicidal thoughts, attempted suicide, anxiety, panic attacks, feelings of low self-worth and inadequacy. But these improved as my physical abilities improved. I still have issues but I am coping a lot better.
There will always be the spectre of relapse hanging over me, but I know what to do if things get worse for me again. I choose to work because it gives me purpose and is rewarding. It can be very demanding, but without support I wouldn’t be able to accomplish what I can or be able to help others with ME/CFS and the families who care for them.
I choose to put my energy into my work and I depend on others to help me around the house with cooking, cleaning, laundry, taking me to appointments and walking Buster when I cannot. I can only look back in this way because I have reached a position of relative stability and improvement. Many people with ME/CFS do not.
In the last two decades I have struggled a great deal, not only with crushing physical limitations, but with the mental anguish of loss, of guilt, and the frustration of having a diagnosis that has been unfairly stigmatised and for which there is no effective treatment – let alone a cure.