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.
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.
16 thoughts on “Hidden faces of M.E. guest blog by Russell Fleming: My early struggles with M.E.”
A moving and complex story.
I think in truth none of us who has experienced serious illness & has to live with a degree of chronic disability can ‘get our old life’ back. Heraclitus of Ephesus was famous for his insistence on ever-present change in the universe, as stated in the famous saying, “No man ever steps in the same river twice”.
So over the years, I have accepted that I have to establish a ‘new normal’. The grief and anger at suffering a substantial loss (consistent good health and all the benefits of that) are tempered (to some degree) in the process. So acceptance (mindfulness if you like) can lead to greater peace, even if it feels like going against the grain of the popular cliche of the patient/person who ‘fights’ or ‘bravely battles’ their illness!
I wish you well.
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Another heartbreaking story, well done for telling it, Russ.
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It’s a privilege to host something as important and personal as someone else’s M.E. struggles on my blog. You describe very well the huge losses you’ve had to cope with along the way.
Thank you for sharing your moving M.E. history with us, Russel. Best wishes, Emily
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Thank you guys and especial thanks to Emily without whose expertise I would have been stuck. I really do take my hat off to all those who write blogs. It is such an art that I could not do it with any regularity or at length.
Even now – after countless reviews and edits and rewrites from the initiat 5,400 words – I can spot errors in spelling and missing words in the above 2 pages! Argh, it never ends 🙂
It has been a frantic week of writing and editing, not to mention reliving early memories that I had left behind me. And I am sure it has been very similar for all those other people taking part in this campaign.
In fact – as was explained in an earlier version of this narrative – I actually burnt all my medical records and scans and x-rays even pictures from that time in my life, as part of a ritual cleansing I suppose many years ago.
Indeed, every time I felt well enough to ‘return’ to the real world so to speak, each time I thought ‘this is it, I am about to leave ME behind’, I have cleared the decks of my life before. So it has been quite the emotional journey this week and it’s nice now to see it completed.
My very best wishes to everyone who is carrying this particular disease buden. It is incredibly cruel but I think made somewhat easier to bear when we can share things with others who understand.
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It’s such a strong story you’ve shared. I think it’s so important when ME-patients do like you have done now. I think there’s a particular feeling of loneliness linked to having an illness like ME, due to the fact that no one understands or knows what it really feels like. I feel that when reading other ME-peoples’ stories, some of that feeling goes away because it tells me that there are people out there who knows. What strikes me when I read your story is how hard ME-patients have to fight without much support. I don’t think that any of us just automatically know how to cope with something as dramatic as this. When getting ME one enters a completely new territory, with the illness in itself, the overwhelming feelings of helplessness and powerlessness, the massive loss of control, the grief and the fear. I have to accept that medical science haven’t found a cure yet, but it’s very hard to accept that people don’t get much support and help to cope with all those BIG feelings. I feel very grateful towards all who share their story and all who on a regular basis use their limited energy to write and spread support and knowledge about this condition – and especially so when knowing that this activity most often leads to a painful increase of symptoms. I guess having ME leads to an increase in empathy too 🙂
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Hi Hilde 🙂
You brought tears to this oldtimer’s eyes. I’m sending you an empathy-hug x
I was really moved by reading this blog (and dearly would have loved to have had someone administer a good verbal slap to that unfeeling psychiatrist). Your enquiring mind and tenacity are the things that come through most for me. Sometimes I think that it is hardest for those of us who want to know WHY – and yet the ME community benefits so much from people like you asking those questions. Grateful for you.
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Thank you Tanya 🙂
When I was deliberating over the initial text I was wondering how might this blog have read if I had written in 5 years ago or 10 years ago. I think only with perspective and in hindsight can I now say the things I have said. There’s a period and for me it was a long one, where the grief was so strong and the inability to cope so raw that I couldn’t have stopped to write coherently. And there’s the embarrasment as well of course.
A lot to come to terms with and only by failing to push-through and conquer ME myself did I eventually learn – with the help of the consultant I mention and my family’s support – to realise I was fighting the impossible fight.
But as I say, things are calmer in my head now. I can at least think more clearly. And it is different to the cognitive problems we all face with ME.
Russ, such a moving account. I had to read in 2 parts as tears were getting in the way. This awful disease steals dreams from patients and their loved ones. We all need to work together as best we can to make things better for you all. And soon!
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Thank you Jane 🙂
I thought focusing on what was for me the hardest battle – the coping and loss – would perhaps be worthwile and I am immensely grateful and very pleased to have awoken this morning to all the lovely comments on social media.
Makes me feel bad to think I made you cry but I do agree with you that getting our stories told does help not only people in our own situation – within the community – but might just help others outside of it to see just how devastating ME can really be.
I hope you can enjoy your Sunday and that my ramblings did leave you and your with hope x
You have put into words how so many of us “forgotten “sufferers feel.I too have been ill for 18yrs and have come to realise that I will never have the life that I once had but I have been very lucky.I have a wonderful caring husband ,grown children and now amazing grandchildren who all accept my limitations.I still have terrible times but we have to stay positive and hope that one day someone will come up with an answer.Stay strong and take care of yourself.
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Thank you. I must admit when I wrote it down and having edited my original quite heavily, it was a case of crossing my fingers and hoping it might resonate with a few people 🙂
It’s a long time isn’t it when you look back. I try not to now. I had a conversation on Twitter last week and was asked how long ago I had been diagnosed. I honestly couldn’t remember – I had buried those memories (what’s the point keeping them when an ME-brain can only carry so much?). Needless to say when I replied initially I was a decade out and then had to check an old CV to remind me when it didn’t look right 🙂
Having a support network is SO important but it can be a real fight to obtain one and dealing with the disbelief when your own brain is scrambled makes that at times very hurtful. But things can improve on that front. Even now though some elements of my family can’t quite accept things and so I receive the occasional ‘Have you tried this? Why aren’t you doing more?’. But I can now tolerate it and then discard.
Of course one of the problem with social media that we all face are those comments we’d rather not receive. It is even more hurtful when the lack of understanding can originate from within the community. But I have the confidence now to handle it. And there’s always the ‘ban’ button 🙂
All the best x
Im a person with very severe M.E and profound Fibromyalgia,i guess i lucked out on the breaks lol.Im not able to write my story as my cognitive decline is very pronounced ,matched only by my pain and fatigue.I will say that i was once a very capable strong proffessional,and still rant and rave and grieve for my old life and the healthy Me.Ive also thought of suicide ,but having lost 2 family members to suicide,i just could not inflict it on my family.Im 16 years in to the maze and just hope that someome somewhere will unlock the many secrets of this disease and once more set all sufferers free .My energy drains so i just want to send love and bedt wishes to all my fellow sufferes and families.x
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Amen to that Brumchick. I do think this year has seen some sound progress towards recognition especially from America. And research in recent years has tended to be bigger and better.
ME Research UK have just provided a summary of immune changes found in patients with severe (housebound/bedboud) ME, that you might take some comfort in: http://t.co/zspZhgj8Al
Perhaps someone could read it out to you.
I think you have done amazingly well to write a comment.
Thank you x
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So much of your story resonates with me Russel. I was a highly qualified nurse just about to embark on my Masters degree and also starting teaching at a University alongside my usual job. One day I collapsed for no obvious reason. It kept happening and within 3 weeks I could not get down the stairs, let alone climb them! I was totally confused. So many tests after tests came back negative. I had so much medical knowledge but I hadn’t a clue what was going on?? I was fortunate through my medical connections that I saw a Neurologist privately who on the spot had no doubt what was going on and diagnosed M.E. Did a diagnosis help? Not a bit. I raged against all the Doctors who looked at me either sadly “there is no treatment available” or with a look of indifference as in my own G.P’s opinion “it’s a dustbin diagnosis Julia, I’ve no idea what’s wrong with you” I became, like others, trapped indoors for years with no help. Friends disappeared and after 7 years my husband of 29 years also went! But through all this one thing sticks out in my mind. Like you Russel, I came to the end of my tolerance and tried to take my life. I didn’t succeed either but I too faced the Phychiatrist feeling like a naughty child. But this guy was amazing. He read my history, put his feet up on the desk (yes really!) and looked into my eyes and said “you’re not depressed, you’re totally pissed off & angry with the world you have been shut out of and so would I be if I couldn’t do all the things that you can’t. I don’t know much about your illness but if you want I can prescribe you some speed to help you get through the day” I looked at him in disbelief and then laughed out loud for the first time in months! While politely declining his offer of a prescription of “speed” (my brain didn’t need more messing with!) he’d hit the nail right on the head. I was enraged, bitter, angry, and grieving for the life I’d lost. It took me a long time to rebuild my life and I’m now 16 years since diagnosis. I still have lots of limitations and live my life in little chunks but I do have a life again and a new loving husband who understands what I need to live my life comfortably. I still have moments of complete frustration with my body but life is good again.
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Thank you Julia,
I hope you understand that I was so very moved by your story and then also laughed out loud at the recommendation of ‘speed’ 🙂 OMG! If only! 🙂
He actually sounds like just the kind of chap I wish I had had after my own ‘end of the road’ experience. But then he is probably more like the immunologist I spoke of I suppose.
I think all the specialist services would do themselves a whole lot of good if they simply began – after having examined and listened to a patients’ history and made or confirmed the diagnosis – with the words ‘I believe you’. Or somesuch derivation thereof.
It really can mean so much. Of course they’d need to actually believe it themselves, and I do read stories of the disbelief – such as you describe above – although I have to say this wasn’t ever something in my experience. At least not to the extent I felt it fundamentally affected me. Bad doctors, sure, but none that left me feeling betrayed. I think most of them felt helpless, hence I suppose the constant, ‘take it easier and rest and you’ll get better.’
Mind you, these days judging from some of the other stories I read, chances are high that I’d have been streamlined for graded exercise therapy. So no doubt to some reading my blog, I got off likely perhaps 🙂
Oh it is such a horrendous battle isn’t it? I am so sorry about your first husband. I have had relationships since my fiance left but she’s the one whose memory I really have problems letting go. Ah regret and guilt. It’s never easy.
But I would certainly agree that life is liveable again and I’m really pleased to hear you getting on with things and with a new husband. That is wonderful to hear.