Me, Myself and My ME
When I opened my direct messages in late January – early February 2024 and saw a message from Smile For M.E. I thought it was a general response to the post and story I put up about my latest podcast. To read a message asking me to tell my story about living with M.E. I really was taken aback and felt honoured to do so.
The next issue I had was, “what should I write about?” As it could be about anything to do with my lived with experience.
I figured a general overview would work best as there is so much to say and thankfully I have two-three months to put it together.
It started for me when like many of us, I had a viral infection: Glandular Fever. Initially getting the diagnosis of glandular fever felt like it took forever. Seeing as you can test for it. For some reason the Epstein-Barr virus was hiding or lurking with malice in the background avoid from detection. Depression. That has to be the answer. So, I was told to take a day or two off work and go for some walks in the greenery (in London), and that should make me better.
It seemed like strange advice considering my symptoms of glandular fever but I tried. Safe to say, I didn’t get better. I was advised to take a break and go back to my parents in Devon and just see if a complete change in scenery would help. When I got home to my folks, they could see straight away that I was not just needing a break, I looked awful. I was taken to their GP after a week at home and had more blood tests done and they said that my results would be sent directly to my doctor.
When I got back to London, in no better shape than when I left a fortnight ago, the doctor had received the results and Epstein-Barr was picked up and with the back and forth I had been doing already, the doctor signed me off for a month and said to go home and we will see where I am at after this four weeks. Of course, this happened a further more, five times before I felt like I could manage work.
I was working as a butler in quite a high profile role that I felt I put a lot of pressure on myself to get back to work. So late 2004 I tried and gradually pushed back into full time. Although I was constantly back and forth to the doctors and felt exhausted, my glands constantly ached and all my limbs were heavy.
I could find myself making it into work one day, then not the rest of the week. I’d do my shift then get home and collapse and sleep until the next shift the day after. I couldn’t even get dressed for work a lot of the time. And this is when I was put on an antidepressant fluoxetine (more commonly known as Prozac) because they felt I was still depressed.
During this period I had personnel get involved as they couldn’t understand my absence. I was sent from hospital to hospital and had so much blood taken I felt like a pin cushion. My wife at the time, she had been with me prior to glandular fever, she had to take me to and from hospital as I couldn’t manage it by myself. Even going to our GP that was incredibly close, I couldn’t achieve on my own. But each effort came back with, the bloods are all okay, there’s nothing wrong with you. And again I was advised to go for long walks. The Prozac really didn’t work, it made me a bit of a space cadet and definitely did nothing for my physical or mental state. I knew there was something wrong with me; I just didn’t know what!?
I did and still do understand the premise of exercise to help you feel better especially if you are with a mental illness. It can certainly help. However, when you have the evil of M.E… its sadly one of the worst things to be advised.
The turning point for me and finally getting a diagnosis was almost two years from the onset of glandular fever. Again, I was suffering really severely and really didn’t know what to do. I couldn’t explain my absences with work due to all my tests running as normal. To the medical world I was tip top. We were away on a trip with the family I worked for and a very close work colleague who happens to be the Godfather to our first born, spoke with the team and they agreed to send me home and take leave as I looked awful and they couldn’t believe I was still being cleared for work.
It was at this time, my Nan (RIP) was reading a Sunday supplement magazine from one of the newspapers. Halfway through she saw a big headline about a mysterious illness called M.E. After reading a paragraph or two, her instant reaction was: “This sounds like what our Michael has!” Alas, she called us to read it – I was at home with my mum, dad and sister at the time. She read the article and said she would send it on to us.
There was a phone number on there too which was for the ME Association. They now have ME Connect phone line for any help or support in regards to this condition. So we called, my dad spoke to them and then they spoke to me and said that I need to go to my GP and request a referral to the ME Clinic at St. Bart’s in London as it was thee closest and one of only a few places that “treated” M.E. Patients.
After a little mix up with the referral, I finally had an appointment. Yes, more blood required. I was surprised I still had a vein. BUUUUUUT, I got my diagnosis of ME/CFS.
Now what’s in a diagnosis?
It’s such a difficult thing to describe because the relief that I had a name for what I was going through (though very grateful for the acronyms – why give a condition that has sever cognitive issues such a long name!). My immediate thought after the diagnosis was: What even is ME? What is the prognosis?
When I realised the prognosis was as long as a piece of string, it really disheartened me. I’m typically very positive but not knowing, if, when, how I was going to get better was a huge knock.
I had not long had my 25th birthday, bear in mind this all started before my 23rd birthday, I felt as if a weight had been lifted with the diagnosis but then came crashing back down to earth with the knowledge that this may never get better.
And for two years I was out of action, was taken too and fro from the ME Clinic at St Bart’s by my then wife. Sometimes I had three appointments a week and was so tough as they didn’t know whether to have all three on the same day, or split them up. My goal for each week was to just make it to those appointments. Sometimes I wonder if being an outpatient could have been changed to an inpatient.
When it came to my choosing what path I was to take with my treatment, I was given a choice. I could choose GET, CBT, Pacing or I could be part of the research programme that was due to start: PACE.
Incase you are unaware or finding out about M.E. for the first time:
GET is Graded Exercise Therapy – where you undergo physio and gradually increase the level of intensity which is now proven to be of no benefit as it makes patients worse.
CBT is Cognitive Behaviour Therapy where you have coinciding to tackle your illness mentally. Not a cure, but has some benefits in coming to terms with your new life especially if the therapist believes the illness is real. Sadly some out there still question M.E.
Pacing is as it sounds, you have to pace your activity to help you manage your symptoms and illness and is of great use to the wider community.
PACE trial was a study into the three above methods of treatment which seems to contridict. Its actual findings to make CBT and GET should be used to treat and get the patient back to normal.
I knew no better at the time and chose CBT. I think this gets a lot of hate from fellow sufferers but I do think it’s the way the method is used. As a tool to help come to terms with this long road you are embarking, I do think it has its values. However, using it as a therapy to think yourself better is incredibly dangerous.
I don’t want to hold your attention much longer as I’ve said more than I planned. Four years on from getting diagnosed, my wife and I had split in 2009 as it felt more like patient/carer and it took a massive strain on our relationship and we decided to go our separate ways. I was back into work, but rather than a butler I was doing the office work and filing for my boss for two to three hours a week. Which was a positive. But not what I was used to. I had to do less physical work just to be able to be back in some shape.
Come 2011 I was discharged fully from the ME Clinic and back to full time work and signed off as in remission. Which at the time, I honestly thought I had beaten ME. Maybe that was naivety on my part or just the joy of being fairly symptom free – my glands still always held a problem. And though I was starting to run and exercise again to lose the weight I had gained through medication and the illness, I was never back to normal. I just had a new normal.
I was on regular checks with my doctor to make sure I was okay. Any virus or such that I had, he would put me on bed rest and recovery so that it wouldn’t trigger a relapse. And it worked for a couple of years in which that time I met my now wife Lindsay via work. I will always be thankful for that. I never would have met her without being back.
Then something terrible happened, which I will respectively leave unsaid, but it caused trauma in both myself and Lindsay especially with the handling afterwards and the stress sadly triggered my first relapse for three or so years. And it would have to be said, it was the first of many. I also developed recurring shingles which I must say, I thought if you had it once, that was it. Not true! I get it by my left eye and had 8 times since 2014 and now on preventative medication to take daily to try and subside it.
More positively, since then, we have a family of us and our two daughters, we managed to get married in St. Lucia and have settled down in Windsor. Sadly this relapse re triggered my M.E. And I have been very up and down since. Periods of remission and long periods of relapsing. Then Covid happened and at a time I was doing quite well health wise. Then I agreed to a flu jab with my covid boosters and boom, relapsed and sadly been that way ever since.
I have some good moments and sometimes good days, where the symptoms ease a little. I also now have a power chair so I can get out a little. And though my condition is at moderate; I focus on getting our girls to school and then picking them up. The rest of the day is mainly in bed or on the couch.
Some of the stigmas that came from being at an M.E. Clinic and general practice saying that graded exercise makes you better also stuck with me. I fell into a pattern of increasing activity plus adding a workout routine. It would be okay for a short while, then I would relapse and go through the familiar routine of bed bound and rest as much as possible to trying to get back to work any time after a six month period; sometimes longer.
I remember when the first relapse happened after my discharge from the clinic, my GP asked if I could get in touch with my specialist team and see what they would advise. So, I did. The response from one specialist was that I have all the tools to help manage relapses and setbacks so lean into what I learnt and I should be okay. Or I can be referred again. But the process will start from the beginning. I really didn’t think I could handle another hit of M.E. Clinic. And my other specialist, my psychologist, said: you haven’t relapsed, you’re cured so it’s just a nasty virus or post virus fatigue. It really felt like from then on, I was on my own. Although my GP’s have been brilliant, M.E. Has never been an area they expertise in, so they are constantly learning with me.
Now, I can see that me pushing my body to exhaustion has probably been detrimental in not helping my body at all. I love to exercise and finally admitting that I can’t, really has hurt me mentally and I don’t ever want to give up the fight that I could get better one day and stay healthy. The reality after this relapse is, I may never be who I was before. Admitting I’m disabled too, is such a weird feeling. Saying it out loud and using aids to give me a slightly better quality of life, has felt tough. You do realise how ableist the world is when you see it from a wheelchair.
However, I have during this recent relapse in my condition created a podcast about M.E. Called Chat with ME and my Linktree for it is below so you can have a listen when you are able.
https://linktr.ee/chatwithmepodcast
My final word though, has to go out to the M.E. And all chronic illness community who by large are still so positive and I’ve found some of the most beautiful caring people since being diagnosed. And all the work that the various charities such as Smile do for advocacy and caring for us, goes without saying, but we are and I certainly am always so thankful to have you guys in my life.
Thank you for reading
Michael xxx