M.E & The Virus that never leaves

“No poly. I feel like a bag of shit. Didn’t surface until afternoon. Can hardly eat. Can hardly move my eyes.”

This was an entry in my diary, one of those five-year diaries mainly girls of my day would be gifted for Christmases or birthdays. In my case it was my 14th Christmas, an idea of my mum’s, I think, who had also kept a diary as a teenager. I wrote it diligently at first. Mostly nonsense about boys and silly moments with friends. I kept it going until my 19th year.

I remembered this diary lay locked in a suitcase full of memories – letters, gig tickets, journals, other random ephemera to which I had attached meaning – the diary itself unlocked, its key lost to time, I remembered it vividly when I was experiencing the first side effects of the covid jab I had in late March.

For some reason, which no-one seems to know, the jab triggered for me some of the original symptoms and intensity of glandular fever – increased temperature, shivers, lymph node pain, sore throat, exhaustion and for the first few hours delirium. I flashed back to the day it happened, the day of this entry above – 12th November 1989. 

32 years ago. 

I was 18. I had just started my first year at what was then called Newcastle Poly. I had just returned from a weekend visiting my boyfriend in Liverpool. I had started to feel strange on the train. My eyes hurt, I was shivering although wrapped in my jumper and coat, and my throat had started to throb. Somehow I made it home to the flat I shared with three other third years and the next morning, or rather afternoon, woke up unable to move my body, and everything, my eyes, my skin, my bones, my muscles, even my thoughts, hurt. 

What I didn’t know then was that this would be a regular refrain for my adult life as this bout of glandular fever and the virus that caused it, likely contracted from my non-symptomatic boyfriend, would stay with me, and that and would be known by all those who suffered the same fate, as M.E. 

M.E stands for Myalgic Encephalomyelitis. It sounds such a heavy term, something you imagine a doctor would tell you in their best bedside manner before prescribing medicine or surgery to alleviate your condition. Saying it out loud, when you can wrap your tongue around it, makes it sound serious and possibly life-threatening. If you have never heard this term before you might feel that too. As you should, it turns out. You see, the irony is that it can be, it can kill and it can destroy lives, and the reality is, that this very real and crippling condition is mostly ignored. The reality is the bedside manner people with M.E are most likely to experience is a disbelieving doctor holding a bunch of negative blood tests, shaking their head and telling them to get out of bed. 

But back to that 18 year old with glandular fever. From my diary entries I can see that for the next six weeks I mainly slept and rested. I lost weight as I didn’t want to eat at first and I had a reassuring diagnosis within a week. I had been sent home back to my parents who took turns with my Grandma in looking after me. I remember my Grandma poking me awake after sleeping straight through the day. She told me she was checking “I was still alive”. I had some days where I felt well again, false friends of days where the day after I’d be back in bed. I’d make my own breakfast, dance a little around the room, put on make up, sing, ring one of my friends proclaiming I was on the mend, back up that ladder, then whoosh down the snake I’d go back to exhaustion and stillness and pain. That pattern continued until it looks like sheer will and frustration and the crippling fear of missing out on university life pushed me back far too early to lectures, bars and parties.

I look back at those entries now and shake my head. So dumb. Such a dumb kid. So desperate to have a good time and pretend it wasn’t happening. In therapy they would call this my denial phase. My dad called it “burning the candle at both ends”. My doctor didn’t call it anything because they were not really interested in any post-symptoms I was experiencing, that I wasn’t getting better. They just shrugged and told me to look after myself.

I will never know whether it was the 18 year old gone wild with freedom after being released from a controlling household, or the changes the virus made in my cells controlling the outcome that made sure I wouldn’t get better but I do know that at the time no-one knew what was going on. There were times too it would happen when I had done absolutely nothing. No candles to burn, just whoosh back down a snake when I hadn’t even climbed a ladder. It was just “one of those things” I would have to deal with. 

So I did. The best I could. By ignoring it and hoping it would go away. Always a great strategy and one still used by psychologists, well meaning friends and frustrated family members when people with M.E mention their symptoms. Not at all a spoiler for anyone but ignoring it does not work. Because it isn’t something that positive thinking or pulling your socks up can solve. Maybe one day we can ‘talk’ to our cells and heal them ourselves by changing our thoughts and thus neurotransmitter response, but I feel we may be some way from that. So stiff upper lip and getting on with it – it’s not going to cut it, no matter how hard you try.

After giving up on giving up and dropping out of Poly, I did start to grow up and look after myself better. Slightly, I’ll admit, because I was, as the 21st century saying goes, attempting to “live my best life”, but a year later weird symptoms hadn’t gone away and new ones joined the party. Roughly every three months I would get tonsillitis. Not scratchy throat but full on icky blisters on my tonsils. A doctor got so fed up of seeing me for the same thing that he handed me boxes of antibiotics and told me to take them whenever it would happen again. Note he did not get fed up enough to ask if anything else was going on or check my medical history or send me to a specialist, that didn’t happen until five years later after a doctor proclaimed “Yuck” upon seeing my scarred tonsils and told me they had to be “whipped-out post-haste”. He did not, however, investigate why this has happened in the first place. 

A few hundred miles south and another two years later I had become accustomed to days where I just needed to sleep, and between that and the continuing bouts of tonsillitis I attempted to live that best life. I had a job I loved working behind a bar whilst studying my degree again. It was one of the crazy busy ones with a spinning wheel all the students were fond of to get cheaper drinks even cheaper. On my good days it was loud, buzzy and once I was on my shift I didn’t stop. Until one day I noticed a tingle in my wrist, then my elbow, both my elbows, my knees then my ankles and my jaw. And what was at first a tingle morphed into a searing pain, as if someone was running around in there pushing up tiny hot pokers through all my joints. That pain or sequence of pain would stay with me until my thirties when I worked on tuning it out through meditation. Not an overnight bliss out on a cushion but focussed regular mindfulness that helped dull the signal, rather than fix the problem. Because according a stream of GPs and specialists there was still nothing wrong. I mean there was the raised ESR levels, high rheumatoid factor and low iron binding capacity and other red numbers that were glossed over but apart from that, nothing wrong. Oh sorry there was one who said “your immune system is doing something but we don’t know why”. He duly wrote to my GP and then, if I remember rightly, nothing happened.

Sidebar: This nothing wrong pain happened many times since then including and up to last week. Six weeks post-jab. Almost the same path of travel, the same gremlin let loose to wreak havoc. But this is in no way related to a vaccine that mimics the invasion of a virus and the immune response is it. I’m sure that is just a co-incidence.

So back to my twenties. Joint pain, exhaustion unimpeded by sleep, ironic insomnia, weakness, sore throats became the chorus to my verses as I joined the masses in the world of full-time employment. I had continued to travel down the country landing and setting up house in the Home Counties. I finally had my tonsils taken out which took tonsillitis off the table but dealt me pharyngitis instead as well as casually named “throat infections”, or URTIs, as they became fashionably known and scrawled on various sick notes for missing work. I also managed to catch chickenpox of all things which a doctor almost gleefully proclaimed, which is hard to miss when your patient tells you they have tiny itching scabby sores all over their body.

Let’s flashforward again to two nights ago and seven weeks post-jab. I felt that same sensation from the day the spots appeared – hot prickly popping all over my body. I even expected spots but none came. But again this is likely a co-incidence and nothing to do with a vaccine that mimics viruses.

Back to those twentysomething days and the same pattern of odd days of what I started to term “tiredness” coupled with joint pain continued and more symptoms moved in. I started to feel like I could not get enough air, I’d wake up and take gulps out the window. I’d get confused, lose words, lose the ability to process simple information like counting money. My pain refrain changed and moved throughout my body into my muscles and bones. It seemed to be in my connective tissue too but doctors shook their head when I asked if that was a problem. Some bright-headed doctor proclaimed that this was “low level inflammation” and decided the best course of action was anti-depressants in a low dose, that this would rid me of my pain.  Other than dry mouth and more insomnia, I couldn’t notice the difference, but I did notice two new terms were scrawled on sick notes – “post-viral fatigue” and “fibromyalgia”. Both of these I had to google which had just become a thing by then. But neither were investigated further.

I decided that this was indeed “one of those things” that people, mainly women, would have to live with. I was enjoying my career, making money and learning everything I could about the field of HR, including Diversity. I didn’t know then I would be classed as disabled having a condition that “had a substantial and long-term effect on my ability to do normal daily activities” and I still hadn’t heard the term M.E. That was on its way from an unlikely source:

One of my jobs in my work was to research and procure private health insurance. The CEO of the company had lived in the US, the parent company was in California, so he wanted something comparable. One of those insurances was for critical illness cover and looking at different providers I chose a company called Unum. (Yes, fellow people with M.E who are reading this, that Unum). We all filled in our application forms as instructed by our insurance broker and everyone was then covered, except for a few of us who were told we had chronic health conditions and would not be eligible to claim.  In a letter to me they declared I had “Post-viral Fatigue Syndrome” otherwise known as “M.E”.

Back to google and the penny, that had been inching its way to edge since my first days at Poly, dropped. All of my symptoms, the vagueness of it, the pathology, the crashes, the recoveries, it was all there. I had a diagnosis at last but not delivered by a doctor’s proclamation. (That wouldn’t happen for another fifteen years). I saw too that people with this condition called M.E could not donate blood because of the infectious nature of the initiating virus so obviously what I had was something that lived in my body. I think I remember feeling shocked by the revelation but heartened I was getting somewhere. That was to be short-lived.

The next doctor I saw screwed up his face and then laughed about how people were now rushing to this new internet thing and diagnosing themselves with all sorts and what I needed was some paracetamol and a good holiday. He shrugged at my letter from Unum about this disease they were calling M.E. Can’t speak to what an insurance company says or does, Kirstie, just relax, you are obviously very stressed.

Stress. You could also argue a pandemic is stressful.  Going out in public after mostly shielding to get a vaccine can bring great anxiety so it must be that that is causing all my post-jab symptoms, not the vaccine itself that mimics the invading virus.

From burning the candle at both ends to a stressful job, everyone I sought help from wanted to look at me as the cause not anything that lived inside me. I must be depressed, anxious, I must be crying out for help. I am sure at many points of my life I have been these things but how could I make my tonsils blister? How did my hands stop working when I tried to hold my hairbrush? Why couldn’t I donate blood? Why did it hit me so hard when I had been at my highest point not my lowest? Why did they not want to find out what was going on? 

I crashed massively in 1998. Nine years after my initial infection of glandular fever. I was off work for six weeks. My employer decided that my role was redundant. I lost my job. I took the next 18 months off to ‘fully’ recover. I decided that I would use the  time to find out everything I could about this condition, join networks, seek alternative treatments, in other words figure out how to heal myself. Things got a little strange after that, it looked like I’d found the magic formula but that wasn’t to be. I will save that for another story.

I am tired now. I have been typing for over an hour after a long sleep and I want to post this for ME Awareness day, which by the time I publish this will be today. My husband took me out for a coffee, out into the world. The first time since I crashed post-jab. That was three weeks ago now, around three weeks after having the vaccine. I have still not recovered. I am nowhere near my baseline and I feel, as my eighteen year old self put it, like a bag of shit.

But it’s a co-incidence that I had a vaccine that mimics the invasion of a virus and a bigger co-incidence that all my symptoms since glandular fever and post-jab are indicative of a viral infection that has not gone away. It’s just a psychosomatic response of female who has found a twisted way of coping with life events, a cry for help from a vivid imagination. Not the result of multisystemic condition which has altered my cells at a fundamental level, cells that no longer function in the same way when exerted physcially or mentally; that’s not it at all. That is as likely as the world stopping due to a global pandemic caused by a virus that for some may never leave.  As likely as being told that same virus is now just a figment of an overactive imagination, made up in your head.

[part two of my story continues here]

***

For more information. That is, THE FACTS, on M.E and see what amazing things are happening to find a cure, please visit these incredible organisations .

ME Association
Action for ME
CureME
Me Research UK
Decode me
Me Action
Phoenix rising

*If you are struggling with post-viral symptoms following Covid-19 or any other virus please know you are not alone and not making it up. Contact the charities above or contact me directly if you need to chat.

*The severity of M.E that I have is termed Mild-Moderate. It means that I do have good days where I can go about my life. People who live with severe M.E do not have that privilege. Some are bed-bound for years. Some cannot process the stimulae of noise and light and have to be tube-fed. Some are sectioned because it’s considered to be “all in their head”.

*This disease needs more investigation. It needs to be taken seriously. M.E is one of the lowest funded chronic conditions out there and is it’s pathology is bitterly contested by theories which expound the belief that it is psychological illness only despite growing evidence, and in my mind obvious evidence, to the contrary. In most cases people living with M.E are funding research into treatments. People living with M.E are also supporting each other to campaign and raise awareness.

*This is the point of the ME Awareness Day which sits in the middle of ME Awareness week in the middle of ME Awareness month. It’s our spotlight, and our time to be heard.