Hidden faces of M.E. guest blog by Russell Fleming: My early struggles with M.E.

Russell has written this blog post as part of the Hidden faces of M.E. campaign. This is a week of blogs, videos and selfies by people with M.E. and Action for M.E. to help people understand the reality of living with the illness.

G’day! (Or me on a good day) 🙂

Let me begin this epic by saying that writing does not come naturally to me anymore. I realise to those that know me as someone who now frequents Twitter that this might come as a surprise. Indeed following my last relapse eight years ago nervously venturing onto patient forums and following the news and research was one of the ‘tricks’ I used to help me build up some lost confidence and to try and continue to improve my cognitive abilities.

It helps of course that I tend to have an opinion on pretty much everything that relates to our world now, and that I enjoy following research and other news and posting it online to share and discuss with others. But writing at length is incredibly difficult and even when I am able to do it; it takes an awfully long time and comes with many additional challenges – such as being succinct! 🙂

So first of all I would like to raise my hat to all the bloggers with M.E. that do this on even an occasional basis because I think it must take an awful lot to do well…

The early years…

I was originally knocked flat by an infection eighteen years ago. Jees was it so long ago? That infection was thought to have led to brain inflammation and in turn perhaps the seizures I experienced, and then as recovery dragged on with many of my symptoms remaining; the diagnosis became first P.V.F.S. and then M.E.

Throughout these early years the main advice I received was to rest. And rest. And rest. And rest… And I hated it with a passion. I hated the diagnosis and I hated resting. From day one of that diagnosis I wanted anything other than M-bloody-E!

I wanted broken legs or the plague, or anything that might provide me with some better understanding of what was happening; and of course some effective treatment. And then later I wanted broken legs because the damage would be visible!

But above all else I wanted to get back to work, desperately…

When this began I was happily living on the small island of Jersey and working as an investment manager for a private bank. I had responsibility about three hundred discretionary client portfolios, but was also tasked with other projects which eventually led me in other interesting directions.

I was fit and I was healthy. I worked hard and loved my job. The pay wasn’t anything like you often hear ‘city-boys’ receiving, but it was good enough for me. I was also on the fast-track – whatever the heck that meant as nobody ever explained it properly; but it was exciting and I had no complaints…

That ill-fated year I had booked to hit the Inca Trail to Machu Picchu in Peru in the Autumn and had paid a big deposit (never refunded!), but a group of the lads with whom I shared accommodation at the time and socialised – everything was about sport, beaches, parties and dancing in Jersey – had organised a week’s trip to a Greek island and one of them had had to drop out; ironically due to illness.

They asked me, I grabbed some time off that I was due, and went. And that was how my health, my life and my dreams changed beyond recognition…

Now I could say – well I am about to say – that some good came from brief sojourn and it did. I met a girl with whom I fell in love and who would nurse me through much of what came next and who would also, during a period when I did think I was getting better, agree to becoming my wife. But she is the only reason my trip to that Greek island is remembered with any fondness.

After a while – I forget how long – of examinations, treatment, hospital, and bed-rest, and more bed-rest, I stumbled back into work; but was clearly not right. Now, I have to say that unlike other stories I have read, my employers were great. This was both during the time I had that initial infection and right up to and including my ill-health retirement. I mean it might have helped my case that time I collapsed in the director’s office, or the many times I was seen wobbling round the main office, or that particular instance of a seizure, or the profuse sweating and the retching and vomiting, or maybe the shaking, or simply because they knew I wasn’t well…

Of course it was also probably the drop in my performance and absences that finally did for me, but they were a great bunch of people to work with and were good to me over that five year period. I was afforded time off as I needed it for doctors and hospital and to convalesce back in the UK with family – on several occasions – and they ultimately didn’t quibble over my disability pension which was offered freely and gratefully received in 2002.

Explaining it all…

You know I am never convinced that these blogs or even the videos I have watched can ever really portray to others quite what it is like to have everything you know and depend upon taken away so suddenly and then have it or portions of it dangled back in front of you like the proverbial carrot and stick – with the carrot ever out of reach and the stick ever present.

Having your vitality stolen and never completely returned, or having it partially returned only to be stolen again; is really hard for most people to imagine. But this was accompanied by a feeling of having my guts ripped out along with my brain and then having them stuffed back inside, but not quite in the right order and not functioning as they once did, whilst at the same time being told, either by others or by that constant voice in my head; that I should be able to get better and demanding to know why I wasn’t!

We are all familiar I think with the horrors of war even if not – thankfully for most of us – on a personal level but who can ever imagine let alone plan for a similar horror to hit them from illness? You just never expect it and I could not understand how I could be experiencing such terrible devastation – not only physically but mentally as well – in this day and age without any understanding or treatment.

It just utterly floored me! I felt effective treatment and support were perfectly reasonable things to expect from ‘modern medicine’. But as time passed and they did not materialise in any effective way and I couldn’t figure out a way through it, I entered into such a state of despair… I tried killing myself.

I don’t have a problem talking about these times and I wish more people would share their own feelings online. I know that I am not the only one to have gone through this intense desperation and we have lost many people with M.E. along the way because the burden in one form or another has proved too much.

It can be very hard revealing such feelings and I suspect some might not want to talk about it because there is this notion that it might reflect poorly on the struggle we have all faced in getting the medical establishment as well as researchers and funding organisations to recognise that M.E. is not a psychological illness.

Of course my attempt at suicide failed and I am now glad it did. That isn’t to say that since that time it hasn’t been nor continues to be an easy or better ride, because it hasn’t and isn’t.

At the hospital, after my attempted suicide, my parents and I came before a duty psychiatrist – kind of like coming before the headmaster after doing something bad. This extract sums up for me now – looking back – the internal frustration I was having with myself at that time and at others times since.

I remember shouting at this doctor, ‘I HAVE TRIED EVERYTHING!’ – meaning I had tried everything to get better. To which he calmly replied, ‘Well you clearly haven’t tried hard enough.’ Take from that what you will…!

Jersey, the return…

After a long time in the UK convalescing and getting my head at least partly back on straight, I did attempt another return to work and accepted what would prove to be the project that broke this camel’s back. I did manage to complete the project on time and I was promoted for my efforts, and I was offered a posting anywhere I wanted. However, my choice was to return to Jersey accompanied by my soon-to-be fiancé, and this time to a rather nice flat with wonderful sweeping views of Gorey harbour.

However, I had not completely had my health restored before returning to work and managing that project. I hadn’t regained my lost weight and was still quite the skeleton. I had little appetite. I was still incredibly nauseous and dizzy, and very weak on my feet and in pain. Exhaustion and mental blockages were held at bay where possible by caffeine and nicotine and I had a ‘bed’ in the office (well in the closet next to the office and it was a reclining chair)…

To this day my body seems open to any and all immune insults all of which seemed to ‘come out’ as symptoms that replicate those of my M.E. – with the exception perhaps of snot and cough where appropriate. Such infections would see me needing more and more bed-rest and being less and less able to function.

For me, M.E. at a normal level was just like having the flu coupled with jetlag. But additional infections would hit me hard and render me useless. After being back in Jersey for a time and trying to settle back in, I was hit by a bug going round the office and never picked up from there. I managed a few false starts back at work, but that was pretty much it for my private banking career…

Let me say that for me, being off work and ill when single was one thing. But being off work and ill and not being able to do very much while my girlfriend worked was quite something else; especially when it was for extended periods and I was the very reason she was in Jersey in the first place.

I couldn’t even have a meal ready for her when she came home let alone keep the place clean. I was again not handling things very well mentally and this was despite seeking and receiving some more ‘professional’ help…

OK. The chap I am thinking about was a bit ‘odd’ but he wasn’t the worst by any means and he meant well and had M.E. He was also an accredited counsellor. And he was an actor. Had been in Bergerac! J Yes, I was desperate. I also tried hypnotism at one time and some flower-petal pills… I could go on and on about what I tried in those early years, but I won’t. Needless to say I spent a lot of money over that period chasing cures and treatments and advice including, I should add, treatments and advice from conventional providers… all to no avail.

I had had enough of M.E. and was once again in angry-hate-mode. And all this bitterness was directed at…. me! I beat myself up about it, about how I wasn’t coping, about how I wasn’t ‘pushing through’, about how I wasn’t doing enough and about how I should be able to fix it…

And it wasn’t enough to cry either – I did plenty of that – I was falling apart again and this time it all proved too much for my fiancé to handle. My behaviour was not conducive to marriage-planning or a future and when so she left…

I think the torment I put myself through was partly grief. Grief for a life half-lived and a life planned and dreamed. But also my ability to cope was not so much the M.E as much as the ‘me’. I was so used professionally to figuring out solutions to problems and on a personal level to being strong and logical, that when M.E. hit it just totally floored the ‘me’. It was too hard to understand. It was too complex. And try as I might, I simply couldn’t figure it out or a way back to the life I had.

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