The Lost Years by Russell Fleming, Content Manager, ME Association.
I would have been a terrific husband and father if not for M.E. At least that is what I have been told. Without doubt my biggest regret has been that I have not been able to have my own family.
I have had myalgic encephalopathy (M.E.) for 20 years now, and while I have enjoyed periods of relative remission, this disease has ruined my chances of marriage and a family.
Working for the ME Association means that I hear from a lot of other people with M.E. and I am forever in awe of those who manage to maintain a relationship.
And managing a family whilst coping with this condition has to be worthy of a medal; if you are in this situation then you have my respect and admiration.
I have had relationships while living with M.E. These were much easier to manage when I was in remission, but they didn’t last.
Love and loss
Back when I first contracted a nasty and prolonged viral infection, I met a beautiful woman who lived in Hampshire (where I happened to have been born) and who stayed with me through much of the early years.
Our relationship blossomed even through those tough years of convalescence. I even spent a year living with her and her parents at their home and will forever be grateful for the support they provided.
But I pushed my luck and returned to work too early…
I couldn’t cope with full-hours and all that came with a hectic job working in investment management.
There was little flexibility and I had no support. People assumed – and I didn’t correct them – that all was now well.
I crumbled mentally and collapsed in on myself. Eventually, I was offered and accepted ill-health early retirement. It was an incredibly difficult time for both of us but because I was so consumed with ‘me’ I didn’t have enough left for her.
She made the right decision to leave. I wish I’d had the clear headedness to talk things through with her, but I didn’t. We split amicably I think but with huge regret on both sides.
Insecurity and self-doubt
She was my fiancée at the time, and I am in no doubt she would have been a fantastic wife and mother.
Can I blame M.E. for not being a father and husband? I think I can.
Although it was my inability in those early years to accept and to cope with what became a chronic illness, I think it was understandable.
There was no awareness. It all came as an incredible and overwhelming shock. There was no help offered – no experts available.
It was devastating to learn that a virus could affect me so dramatically, and that M.E. could be so debilitating and hang around for so long.
I wasn’t the person I was and being chronically ill wasn’t something I was capable of accepting or adjusting to. All my hopes and plans were suddenly up in the air as was the security I had felt with my career.
And this feeling of insecurity and self-doubt undermined my confidence. I no longer knew who I was or what I was going to do. And this has continued to affect my ability to initiate and maintain relationships let alone to even consider marriage and children.
But it doesn’t stop me yearning for them. It’s what still occupies my thoughts and dreams at times especially when I look at my younger brothers and how well they have done with raising their own families.
People talk about the need for acceptance with chronic illness – especially one that affects your ability to function normally – and it is important, but so too is adaptability. Personally, I think adapting to life with ME is the hardest part.
Life with ME
My world shrunk with ME. My hopes, dreams and standard of living were all reduced as was my ability to do the things I took for granted.
In this smaller world I am able to focus on the smaller things I can achieve on good and bad days. Things that other people might not consider achievements.
But I have also achieved some quite major things in 20 years of illness that I certainly would not have considered possible when at my worst.
Not on the scale of my life before M.E. or what I might have managed had I not become ill, but nevertheless I can look back now and feel some measure of pride at the things I have done.
Of course, it never makes failure easier especially at the time. I might have managed to work and to study at various times when my symptoms permitted but I also failed to achieve what I had hoped at the time might have been possible. I guess it all depends on your perspective.
- I managed part-time at college to study a course in humanities that allowed me to top-up on subjects I hadn’t studied since school and which then allowed me access to university.
- I attended university as a mature student and loved every minute of it – but I failed to achieve the degree (despite passing all exams and coursework and attending for four years including most holidays). Managing M.E. and coping with relapses meant I didn’t get my dissertation completed in time.
- I worked part and full-time during several periods of relative remission, but I failed to keep those regular jobs despite them being below what I thought were my abilities. M.E. always raised its ugly head and knocked me from my perch. My expectations were too high and even as a disabled employee the job demands were too great.
I did however, as part of my university degree in Ancient History, manage to travel when I thought I never would again.
Visiting Italy and seeing Pompeii, Herculaneum and staying in Naples were fantastic highlights for me. I never dreamed of seeing Italy again.
And I managed a holiday in Turkey and saw some incredible ancient ruins – again something I never expected to achieve – and even managed to cope with a nasty bout of food poisoning.
An early accomplishment was I think learning to cope when finances were tight. Budgeting and relying on the help of others was not at all easy but is I think a necessary part of chronic illness.
Flexible working
In more recent years living with M.E. and working part-time from home for the ME Association has been a big steppingstone.
Having that extra flexibility really helps and it means that I can work even though I am housebound. I can finally afford to have the help that I need to do those routine chores I couldn’t manage on my own.
Six years ago, I was back living with my parents here in Cornwall, but living now on my own and working brings a deep sense of achievement and satisfaction.
I have purpose again and that's not something to be underestimated. It’s not plain sailing by any means – I still have good days and bad – and there will always be the spectre of relapse hanging over me I expect.
But I hope to soon move out of my ground-floor flat and into a home that has a garden and might enable me to see and feel the outside world. And that will be something to write about!
Thank you for reading and for your incredible support especially during ME Awareness Month.
ME Awareness Month – May 2020
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The Lost Years
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