ME & Me shares a monthly life story of someone living with ME in Yorkshire. Jonathan’s story is the second instalment in the series.
Jonathan Eyre, 66, from Leeds, struggled for 28 years before finally being diagnosed with ME. The disease forced him to take early retirement on health grounds and hugely impacted his life’s work. He now touches others with ME through his poetry and is well known within the community as An Absent Poet, sharing his art at Leeds Millions Missing 2019.
In the Beginning…
I had just finished my A Levels in the summer of 1973. Through UCAS I had already a place at Manchester University which was already offered for delayed year to give me a year out before Uni, and my Dad wanted me to try to go for a Cambridge place, and this would still get me nine months off before starting at Cambridge, or more likely, Manchester……….. well!
Before my A Levels, I had organised going to an archaeological dig in England (something I had done before), with a few of my friends, to celebrate finishing the exams and school life, all staying in a hostel for a few weeks that summer, and that was where I first fell ill.
High temperature, felt frozen cold with an acutely sore throat that became agonising. Bed ridden for a few days, became weeks.
So bad was the infection that I can’t remember how I was returned home. Think someone from the dig organisers drove me home. I seemed to recover from this, but it took a month and was thought to be glandular fever. I managed to go on a day ticket to the 1973 Reading Festival at August Bank Holiday, and returned to school in mid-September for the Oxbridge exam. I never took them!
Back at school I found that my mind did not seem to work. Being prepared with about a dozen students for the BIG exams, my memory was not functioning, and I was feeling exhausted and unwell. I began being too ill to get up, and too confused to study, or be taught.
Before long I was feeling very ill again, staying in bed, finding light painful, sounds were unnerving, my body ached, and I found only lying down in a curtain-drawn room, with, and I remember, having a laundry clean sock over my eyes, for days, weeks and then months. No radio on in the room, lying in bed, exhausted, moving, walking to the toilet, would exhaust me, conversations with the doctors who visited, exhausted me. No one from school came to see me, most of my friends had gone on to university anyway.
Back then, no social media, no mobile phones, landline phone in the hall, three TV channels, but within minutes of watching TV I was exhausted again, my eyes would not work, and everything seemed, no, WAS, too much. Sleep that I could get (hours of listening to the overnight BBC World Service), was not even refreshing. I could not even read books, I lost the plot, characters, and anyway, a few pages would exhaust me, and I forgot what I had read. It was grim for an 18-year-old!
With no positive Glandular fever result, having also had two separate severe reactions to antibiotics in a row, the doctors tried injecting me with vitamins every week, so I walked to the surgery and back, but that was great to be out, but I was exhausted by the walk for the next 3 days or so. I think loads of family members, the school, most of my friends thought I had had a mental breakdown. No one talked to me about it, no counselling etc, perhaps that is what put school friends off coming round? Still, no diagnosis of M,E, Not for 28 years.
The First Ripples…
So, in this first illness, now seen as an M.E. illness, well at least post viral fatigue, between school and University, I myself tried to help improve my life and health, getting some exercise, wavering between what today we would call paced and over-stretching physical activities, you know, just pushing through, feeling the burn etc!! I had managed to watch a little TV, listening to the new Capital Radio with Kenny Evertt and Dave Cash shows was a life-saver, and then I started walking along the road behind my house then to the river and back, little by little I was getting better, and planned an Inter-Rail Holiday for myself in August 1974, a year after going ill, and the start of my ME life as it transpired.
First push to understand My ME.
I later came to realise, after I had my third main ME crash in 2005/6, that all my life I had to compensate for the energy failing associated with ME At university I did not do much pub crawling or join societies to go hiking or physical activities.
The more sedentary life style, with occasional outings to a party, and living in shared houses where chores and cooking was shared, where the atmosphere was laid back, and social events were mostly indoors, and this worked well for me and my health, and a bicycle, which used less energy than walking, and less over-sensory that using busses. I had to work out new ways of taking notes, and reading still continued to exhaust me. I managed to get a II2 degree, what I referred to at the time as a ‘gentle cruising’ degree.
You see, I am and was blessed with fairly good intelligence, but now, the writing skills or words and ability to plan multi tasks are very limited, and as I say to many blanked faced people, I have a failed executive function, as it fails to kick in when needed.
I then worked in a co-operative bakery where we all only worked a 3 day week, but after more ill health returned, I had to leave after two and a half years, moving into a life on the dole and working for free at sound studios and playing in a band, where again, actual doing things was limited, albeit with the thrill and energy to do gigs, but then recover for a few days, which, I at the time, put down as normal, but of course, this energy crash and rest scheduling is not normal!
My life with its exhaustion and aches and pains, was normal to me!
I also did not realise what I was not supposed to do as a council officer. I had an amazing boss, and within a few years we had set up a trial kerbside recycling system, and expanded it to 12,000 households, with a proper team and me in charge of talking with industry and promotion to the public, even getting the scheme onto Blue Peter, and appearing on a live show of theirs, all with 2 young kids and, still with enough energy to see through this project for the 3 years. Was I cured? I did not know how ill I had been really, but I had little social life, but my life was fulfilled through my family and my work at that time.
Over 5 years I was struggling by now with long bouts of flu like symptoms, sinusitis needing operations, and pneumonia and unexplained sudden exhaustion, and I was so so tired most of the time, but still managed to drive myself on, but looking back, my health was beginning to fail, and my thinking became more confused, and my work, well it was becoming a continual challenge every week.
I was an undiagnosed dyslexic all my school and university life and for much of my working career, and as I found with later ME crash episodes, this disability became more pronounced with ME, and with each recovery from a M.E, the plateau of final ability I reached after recovery was getting to be at a lower level. Forty-eight years later, it is almost totally disabling. I understand my mind as permanently majorly unreliable, like a good but unreliable close friend, loved and needed, but one you can never rely on and can never trust they will turn up on time, to understand instructions correctly.
I don’t think people can realise the huge amount of mind energy I had to use to function normally as a dyslexic, finding ways to remember spellings, not mixing up ps and ds and bs, of remembering things, of even choosing putting on clothes, washing, rewriting essay-writing, cooking and housework, seeming normal, looking after my family, bringing up children, was/is exhausting
My ‘executive’ function, organising things, even simple working things out, either does not now work, quickly gets confused, or thinks and shunts into memory I have done something when I haven’t, or confuses one task with another, and or forgotten peoples’ names are on the tip of my tongue, wrong words are used as the right ones are gone for a while. I have built habits to ensure I remember important things, and routine is my walking frame, my rock of being able to cope.
All this has become my hidden valleys of disability, on top of what M.E. does with its invisible disabilities, and its body pain, muscle pain, exhaustion, broken sleeping patterns, not knowing if I was hot or cold, night sweets, and general sudden long term flu symptoms, clumsiness, sudden loss of any ability to normally do things, needing to sit down, that walking can very quickly become extremely difficult, balance becomes hit and miss, underlining again unreliability, but now in the physical world as well as the mental.
It had a cost, I had to give up job opportunities and activities in business and in the business and community sectors and activity, that were too far from home, too much travelling, too stressful. I had to move back to the job in Leeds because I was finding I was falling asleep when I took my kids to after school activities, and I though it must have been caused by the 2 hours of commuting.
Really Waking up to ME and Disability
The ME, cycle of too much going on, too much effort, followed by illness, and the loss of hope, spontaneity, and enjoyment of family life, work, and the future.
In my major M.E. crash of 2004/5 I suddenly found myself conscious only of being at a computer terminal, with paperwork all around me, with colleagues in the same office whom I could not remember their names, nor remember what work I was doing!
It came after months of deteriating unrefreshing sleep, daytime exhaustion, constant flu and cold symptoms, irritable bowel symptoms, headaches and sinusitis, but a determination to do my job well. I loved being able to improve sustainability and to promote it across the council and our communities. I just turned to my neighbouring colleague in our office and said, “I am not at all well. I need to get home, I fell really ill, could you let our boss know?” I cycled to work then, and, like when I was 18, I don’t remember how I got home.
The weeks of illness are all forgotten. I was off work for just under 6 months.
Now my condition was being taken seriously, slowly the council wheels turned, and with a change of doctor and my growing knowledge of M.E ( I had been diagnosed at the Leeds CFS /M.E. Clinic in 2001) I got effective medical help and recognition now of my dyslexia and M.E. , with my Union on my side I got Reasonable Adjustments at work, the use of 2 pc screens, audio to text and text to audio, and rest periods, one morning and one afternoon and in my own time at lunchtime, using offices or spare room to fully relax in and working from home options, eventually working regularly one or two days from home.
I also started mediation classes at a local Buddhist Centre, again to improve my energy levels, by reducing all the unnecessary waste of energy on stress, with the IT aids , and less commuting to work, really reducing the amount of energy I had been using in dealing with my ME.
Early retirement on health grounds...
It was strange but my verbal intellectual capacity and knowledge on recycling, climate change, renewable energy, worked fine if I managed to keep my energy levels right, but processing that into reports and work notes, in any form, was so so hard and energy intensive, and things like car travel expense forms, I just could not do, all columns tables were always a disaster, and all the time, I was not getting better, and my health continued to decline with long periods of sickness, way above what they saw as acceptable, we had tried all we could to find ways to improve my working ability, but the exhaustion and continued physical failings had to be recognised as never going away.
So, after nearly 10 more years it was at last decided I was no longer able to work effectively for the Council. I began a year’s transition to early retirement on health grounds and being dismissed from my post for inability to do my work, indeed the independent medical report stated that I was never going to be able to work full time in any work situation again before my state pension age. It was a hard last year as this process went through, but all my management realised this was the only option, and so did I.
A very negative but actually, a reality, and it was a great relief in one way. There was no more to do. When the Occupational Specialist signed off on her report, I burst into tears, from so much sorrow that my work life was really ended, but also that I could now lay down this huge burden of pushing and pushing and failing to be able to work.
I have never regained any full life of health again like I had before that last major M.E. crashes. I can get out, walking small distances, I am not confined to bed, my sleep is massively improved, I can drive an automatic car, and have an off-road mobility scouter that I can get out into local countryside with our dog.
Before Covid-19, if I parked near to a shop I can do some shopping. I need help with finances and cooking.
I write poetry and attend occasional poetry events, becoming a spoken word artist, aka ‘an absent poet’. I can chat with people about sustainability, climate change and the dangers of pollution and the need for biodiversity, the need for the weak and powerless to be helped and defended, that care and compassion for all is the best way forward for the planet and humanity.
We are all human, we are all much more similar to each other than perhaps we wish to recognise.
I can meditate, continue to improve my relaxation and body flexibility, gain great joy from being in the countryside on my mobility scooter, from the lives and personalities of my two daughters, my granddaughter, from my wife, from my brother and sister, and my Buddhist practice, so I think I am really very lucky, to have a home and family still, so many with chronic illnesses, and especially ME. do not have this.
I have not dwelt above on the mishaps of treatment; the lack of understanding and closed views of GPs I experienced once I had my ME. diagnosis, the breaking of confidentiality which lead me to find a new local GP practice that understood M.E. and that did not promote the ‘total psychological’ cure that seems to say “just keep doing more and more physical activity and taking the antidepressants, the need to pursue possible co-morbidities because symptoms of ME can hide other serious diseases which all to easily be passed off as just ME. symptoms especially as a lot of our symptoms come and go, and change over time.
Finding I did have Acute Sleep Apnoea, which the local ME/CFS Clinic did not think to test for , or do any other medical checks, ( I now have a CPAP machine every night to allow me to breath properly and not choke when asleep) and help save my heart from long-term damage, but did not find as normal CPAP users do, that their chronic fatigue tiredness also went, what I had was definitely coming from the ME.
I have not written about all the other things that people with ME tend to do, look at ones diet, take extra vitamins, look at supplements, the terror and exhausting applications for PIP, the pitiful inept assessment, and the need for so many people with real but invisible diseases to have to end up appealing decisions and even having to go to tribunal to win a disability benefit to help deal with one’s disability’s and extra costs, and many more things we find as disabled people.
What I can say is that a couple of things have become, from my experience of the disease, very important, they are not cures, we have none as yet, may they come soon, but real benefits for me were the validation of my disease and the disabilities it causes for me, the online and local ME Group that we can attend as and when, with people like us who know what we are facing.
I have a large fan at the foot of my bed which has run for years and completely ended issues with night sweats, and I use it to this day, it helps stabilise the body temperature control I have, and how I find a hot regular bath really reduces the muscle pain I have, and I found training myself to be able to relax my body better with relaxation techniques, and my mind through mediation, saving me wasting of my energy I did not realise I was using, and my Buddhist Practice has shown that I can transform exaggerated ego concern about “why me”, and feeling of “it isn’t fair”, into a real commitment and motivation to develop compassion for other beings and those going through difficult times, emotions, or attitudes to living and life.
Without having been forced to stop my life, to give up my old life, and to stop grieving, I would not be who I am today, and I think I am a better and happier person for it. I’d love a M.E. cure with safe medication, but at 66 years old, I am definitely more lucky than not.
If you’d like to share your life living with ME in the ME & Me Series please do get in touch below.