Russell Fleming, Content Manager, ME Association.
In 1999 I was working and living in Jersey and had been on the island for about two years following a transfer from the UK. I was in my element and twelve years into a career. My role in Jersey was still new and exciting, and any periods of stress were short-lived and resolved without problem.
My health was good, I was exercising regularly, working hard, socialising perhaps too much, and surrounded by people I liked.
We all lived together in a former hotel that my employers had bought and turned into a kind of hostel that housed people around my own age – I was thirty.
Some friends were taking a short break in Greece to relax and play beach volleyball (something we did fairly regularly in Jersey). One of their number dropped out unexpectedly and I took his place.
Unfortunately for me, during the course of the holiday I picked up a nasty infection, but we all expected it would clear-up quickly once I was back home. The infection did pass but not for some time – time I felt I could not afford – and the symptoms I was experiencing never seemed to resolve.
I tried several times to return to work but each time I struggled and was sent home. Remember, I was surrounded by people who also worked, so being at home and off sick became quite stressful and in ways I had not experienced before.
As the symptoms continued to wear me down and my health deteriorated, I was diagnosed first with PVFS and then M.E. These followed extensive testing, more worry – particularly I recall when a brain tumour was suspected – more waiting… and the only advice from doctors and consultants was to, rest, rest, rest.
I know that for some people with M.E., hearing this advice would be welcome news indeed. How many doctors do we hear about who advise, exercise, exercise, exercise?
But for me and at that time, hearing that repeated advice to rest was more stressful than almost anything else. I was not the sort of person to give up and resting seemed a form of surrender.
Surely there were drugs I could be taking or something other than convalescing? Resting seemed to make not a jot of difference although trying to do more was counterproductive as well. I remember that being asked how I was feeling became a question that I would dread.
There was something particularly difficult about having a medical condition that sapped my vitality. And not knowing what might be causing the symptoms of M.E. further undermined my confidence.
Don’t ask how I feel
I even stopped my parents from asking how I was feeling because the answer was always the same – unless I pretended it wasn’t which was something I often did just to sound positive.
As the stress and uncertainty built, my mental health began to spiral. I had a career to get back to and while Lloyds Private Banking were nothing if not supportive, it was harrowing to keep reporting no positive progress.
In the end my physical and mental health became too much and I couldn’t look after myself. I returned home to Cornwall and my parents.
There is something special about having familial support and understanding. It’s good, don’t get me wrong and I couldn’t have survived without it. But I’d been independent since I was seventeen, and at the time I returned, I saw this as further evidence that I was weak and a failure.
My parents could see how much the combination of M.E. symptoms and mental health problems were crippling me, and we decided that if we couldn’t do very much about the former, we would try to work on improving the latter.
In 2000 getting a referral to a mental health specialist on the NHS was next to impossible. I remember Mum having to pull out all the stops to get me in to see someone.
At the time we knew I was suffering from depression, but we also thought I might be bipolar. My emotions were yo-yoing – one moment I was too positive and the next too negative and suicidal (it transpired that I wasn’t bipolar).
Never for a moment did I consider that speaking to a mental health professional would be unmanly or contribute to my feelings of failure. Things had become so desperate, I needed help and support from someone who knew what they were doing and could relieve some of the pressure from me and from my parents.
While the professionals I saw initially and again some months later, did help me through immediate crises, they didn’t instil in me the ability or confidence to cope with a long-term neurological condition or help me deal with acceptance and with the grieving process.
It was almost a year later, and I’d managed to return to work in the UK. It was tough-going – I had a day-bed set-up in the office, car service to my hotel, and set my own hours – but I thought I had achieved a semblance of control and had learned how to manage M.E. and my mental health.
At the end of nine months and the successful conclusion of the project, I was offered a posting anywhere I wanted. I chose to return to Jersey so that I might vanquish the ghosts of my past. It was to prove a bad decision.
The nine-month project was too much. I was kidding myself that I was coping. And this only became apparent when I got back to Jersey and started a new nine-to-five job. My M.E. came on with a vengeance and was soon followed by worsening mental health.
I think some of my problems in general related to embarrassment and in the grip of depression I would imagine that people had very negative impressions of me and of M.E. I always said that if I could have chosen any medical condition, then M.E. would be my very last choice. It was incredibly hard to explain at the time, and it came with a terrible stigma attached.
The occasional stress I experienced at work before I become ill, was nothing compared to the stress I felt living with M.E.
Getting the right tools
In Jersey while trying to hold down my job once again, I was put in touch with a private counsellor. He happened to also be an actor who had co-starred in a famous and long-running Jersey-based detective show on TV – and he had M.E. Although I didn’t know that before I met him.
He was able to provide me with tools necessary to self-manage my mental health but more importantly for me, he provided a safe space where I could offload, and we could begin to work through my issues and concerns.
He was also blunt and honest. And I needed blunt and honest. His own experiences trying to work and manage M.E. were useful, although he was more hippy-dippy than I cared to be, and he helped me to express some of the mess that was constantly occupying my thoughts.
I coped better I think when I finally returned to the UK and my parents in 2002. I was offered, and I accepted, ill-health retirement from the Bank because of M.E. In fact, by then the end of my career brought with it a sense of relief and I felt better able to cope.
I have had good and bad experiences of mental health professionals just as I have GPs and specialist consultants. When things were really bleak in the early years, I remember having a blazing row with a psychiatrist who claimed that I can’t have been trying hard enough to get better. What a jerk he was!
I still had cause to call on the services of counsellors and a psychologist in later years. And I had a really positive experience from my local NHS ME/CFS specialist service here in Cornwall who provided help in terms of validation, acceptance and illness management.
We all I think need a break at times and whether you can attend in person, by phone or Skype, talking to a professional who is removed from your immediate support network, can bring relief – even if it is just a way to get things off your chest.
It is often a slow process and one you need to keep chipping away at. It’s not a cure for your problems – rather good therapy I think equips you with the right tools to cope better. I learned that I needed to give myself permission to feel sad on occasion and that it was OK to do so. That living with M.E. was difficult, that I did need to adjust but that my life wasn’t over because of it.
It can take some time and effort to find the right counsellor or therapist. Rather like the huge range of antidepressants that your GP might choose from, choosing a therapist can also be rather hit-and-miss. But you have to stick with it until you find the right one for you and at the right dose.
Learning to cope
I have struggled with acceptance of my new life away from the Bank. I struggled accepting disability. I struggled accepting the loss of earnings and with budgeting. And I struggled with the loss of my fiancé and the realisation that I am likely to live alone without any children of my own. But most of all I really struggled finding positivity in my life with M.E.
When anxiety and nerves keep coming at you. When negative thoughts are whirring in your head and preventing sleep. When life seems pointless. When you are constantly battling fear. When you feel you are letting everyone down. When you are still trying to do too much. When you still want to please everyone. When you simply cannot cope. Then I think it’s time to consider reaching out to a professional for help.
I can’t say my mental health problems don’t return whenever something freaks me out – it can be relatively minor like a phone call, or major like a PIP reassessment or a bad-patch of M.E.
But I am better able to cope and have come to accept my life as a disabled person.
I also know that any periods of acute stress, uncertainty or anxiety will pass – even if they don’t seem like it at the time.
I no longer feel worthless or unable to contribute even if the things I can do might seem small or sporadic. And I know I can re-refer to a counsellor or psychologist if I have the need to talk outside of my immediate support network.
My name is Russell, I am now fifty years old, I have occasional mental health issues and I have M.E.
Additional support from the ME Association
- ME Connect Telephone Helpline
- Leaflet: Counselling – Your Questions Answered
- Leaflet: Managing Your Emotions in ME
- Leaflet: Anxiety and Panic Attacks
- Leaflet: Cognitive Behavioural Therapy
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