Basic Stuff

• Name: T-Rev
• Country: England, United Kingdom
• County: Bath and North East Somerset
• City: Bath
• Gender: Male
• Age: 52
• Education: Masters Degree
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Postural Orthostatic Tachcycardia Syndrome (POTS)
  • Irritable bowel syndrome
  • Parasitic onset: bilharzia and giardia (Uganda)
• Year Illness Began: 2015

Functioning Interrupted

Most Impactful Loss

No longer able to exercise. Used to be triathlete, was prepared for summer season 2015, haven't been able to run, swim or cycle since then: major impact on body image, depression, suicidal ideation, loss of marital relations. Loss of cognitive capacity: academic research reading not possible.

My Story

I was living my best life, a high output, high energy, do-gooder. Able to travel and work in some of the world's hotspots of poverty, disease and deprivation, seeing major change come about through increased access to education for the poorest people. I loved running, was full on with our sons developing as elite athletes in the UK. Our marriage was outstanding, with equal incomes, great relations, great friends.

One nasty parasitic infection, which may have been two - bilharzia and giardia - diagnosed and treated by the now well-known Prof Chris Whitty, from which my body failed to recover to pre-infection levels, changed everything for worse than I could have ever had nightmares about.

Should have been 3-10 days from treatment to recovery he said. The parasitic infection was cleared, but my body stopped. Crushingly deep fatigue, leaden, concrete-filled limbs, intense pins and needles in hands and feet that stopped me being able to write, but were a clear warning sign of an impending 'crash', when fatigue would be insurmountable, brain fog leaving me confused, demented, scared and hypersensitivity to any noise and light making simple, basic existence all my mind and body could achieve. The contrast with my pre-infection life could not have been more stark.

The first nine months were awful, scary for our young boys: full-on, high intensity, fun dad became an immovable, unrelatable blob. So many tests, privately funded by family members were all 'normal or inconclusive'; one thing was clear though: I was a very, very sick man.

After exclusion of all other options, my GP apologised and said the only thing left is to refer you to the Chronic Fatigue Unit at King's College Hospital, London/ The Maudsley.

I went, how I got there I still don't really know, I was just so determined to get better. GET and CBT for ME/CFS was prescribed, funded by my local council. I was reduced by it to a bed-bound, vegetative state for weeks that became months, only getting out to follow the programme before collapsing. I was called a liar that it affected me the way it did, a non-cooperative and non-compliant patient. They were simply unable to compute that I had followed their protocol absolutely and it made me so bad my wife begged me to stop and leave the programme.

Friends stopped visiting, my wife gave up her work to care for me, after using all my sick leave and more, I was put on extended gardening-leave / sabbatical: 3 months became 6. Eventually I asked to go part-time because I simply couldn't take money from a charity for not working. My employers were excellent, patient and understanding. My work was re-distributed, I started working on tiny projects, as and when able, but only from home.

It may be controversial, but the pandemic and lockdowns were excellent: they leveled everyone down to my levels of restriction. OK, they weren't all sick like me, but not being able to go out, to travel, to see friends and family, to live in one room for days, weeks, months on end, was a leveller.

I had learned after 5 years of struggle how to handle a lot of it, but no-one wanted to know. They couldn't face the reality that what they were hopefully facing temporarily was my permanent, or at least chronic and no-end-in-sight lived reality.

We had to leave the city, and were able to do so just before the pandemic hit. Being in the countryside was a blessing. Being away from KCHL's re-named MUS Department and its horrid staff was a blessing. Unfortunately the new GP and Bath's Royal United Hosptials' CFS Department re-traumatised me; they wanted to do Acceptance and Commitment Therapy, which is just CBT for ME/CFS 2.0. It was brutal, horrid and uncaring. I became suicidal, non-communicative and utterly withdrawn.

After three years I was introduced by a pastor friend to an excellent psychotherapist who understood and was sympathetic to ME/CFS patients. We self-funded 9 months of sessions and I am in a much better place. I still can't walk far, 10-15 minutes per day, I can only work or be outside the house for 3-4 hours per day, with rest periods, without provoking major consequences. I budget my energy, planning work and family socialising around pre-activity rest and post-activity rest. I get it wrong unwittingly too often.

I've tried and mostly had some small benefit from Perrin Technique, Hyper Baric Oxygen Therapy and most recently following a low-FODMAP period some re-organising of my diet, now mainly gluten and dairy free, with YOURGUT+ and Phyto-V supplements I no longer have days of alternating diarrhoea and constipation. The psychotherapy has helped me not feel so vulnerable and equipped me to validly live a less-traumatised existence.

There are still bad days, occasionally bad weeks, some bad months. There are fewer friends still, but I can do a lot more work from home. Zoom and the growth of video conference calls has enabled me to seem to do so much more than after the initial infections, with much less travel.

I hate trying to explain that I'm still sick, that it's not just 'getting older'; that it's variable, often unpredictable and that it is debilitating, demoralising and a disabled existence. I hate it when people say I look well, but inside my body is screaming at me.

My wife has been a tower of strength, grace and commitment beyond her marital vows; without our faith as Christians I don't think I would still be here.

I have been able to ride my motorbike again, but I can't do what I used to as a biker: long rides need planning, multiple rest stops and I still struggle to stand and socialise.

I have tried walking, but it always leads to a deep crash. I miss running and swimming, I miss eating great food, I hate having to be a picky eater. I miss my friends.

So, for the first 45 years of my life, apart from two short, probably Post-Infection Fatigue episodes at 18 and 35 years old, each only 18 months to recovery, I lived a great journey of living well and full. Now it's a broken journey, interrupted and dismembered.

Nonetheless I am hopeful that long-covid and ME/CFS bio-research will combine to help us long-haulers eventually have treatments that get our lives back!