M.E and the virus that went away…for a while… (maybe)

(This is the second part of three of my story of M.E.  If you haven’t yet, I’d recommend you read part one here)

2nd Edit: Oops. I managed to forget a very significant event in my life, or maybe block it out, due to my desire to finish this piece and rest. I’ve added it now. See below.

It’s twelve weeks since I have my first dose of the Corona virus vaccine, and I am still not back to baseline. 

Baseline, by the way, is a term people with M.E use to describe their average level of functioning as opposed to “normal”. There is no normal for those of us with mild/moderate M.E, just a weak level of well we have accepted as the pinnacle that we will attain. My needle has moved towards this baseline now but still nowhere the level of well I have become accustomed to. Still, I need to be grateful for a hopeful direction of travel.

Once upon a time in my early thirties this baseline was much higher.  In fact it would difficult to spot the difference between me and all those “normal” physically functioning adults out there. Because for some still unknown reason my M.E symptoms disappeared.  I am not sure how many people with M.E have a tale like mine of an underlying virus that goes dormant, comes back repeatedly, and then goes so far deep underground you would assume that it had gone. I am reminded of volcanoes and their unpredicable eruptions here. Some volcanoes erupt regularly and others, well, some think they are extinct until half of a mountain blows off without warning.  Quite an apt analogy for M.E if you ask me.

I have many theories as to why my M.E symptoms appeared to go away, one which is definitely not Graded Exercise Therapy (more on that in my next post). In 1999 when the worse relapse of my life so far occurred I did absoute opposite to exercise and slept for as long as I needed and rested for as long as I could.  I began to deepen my understanding of spirituality and began to explore different spiritual practices, including meditation, and one that was gaining traction in the West at the time, which was mindfulness.  I stopped. I rested. I paced. (These three phrases will be very familiar to people with M.E)

I continued like this until late 2000. My baseline improved over time away from moderate M.E back to mild. However with this change of fortune in one way came a change of fortune in another and I had my first miscarriage.  Following a period of physical and emotional healing I radically changed my diet, continued to rest and pace as well and delve deeper into spiritual explorations. 

Side note:  None of these factors I am describing are cures for M.E nor do I believe that having the right diet and lifestyle will magically improve the circumstances of people with M.E.  If you have latched onto that, then wait until you read the whole thing. Also do not forget from part one that I am currently experiencing a relapse due to a vaccine that imitates a viral infection not unlike the initial infection of glandular fever when I was 18.  

A nutritionist had me on a ton of supplements at the time. I had been told by a friend of a friend about a condition called Candida Albacans that may or may not be causing my M.E symptoms.  I decided to explore this possibility, as many people like me have done so before –  Yes, we’ve seen it all.  We have tried it all.  Some helps, some doesn’t but as of yet I have not seen anyone cured by the “have you tried x,y,z” approach to resolving this complex, multi-systemic condition  –  I did have some success with the change of diet alongside the other elements mentioned above and, by the Summer of 2001, I felt what you might call “well”.

I got a job in London in HR.  I started to have my twenties in my thirties (Still had not quite learned that lesson of behaving like an adult just yet). I started to use M.E in the past tense.  Sadly I don’t have any journals now from those days so I cannot accurately say whether that was actually the case or not but I do recall during those times days in bed too tired to move, sore throats, sore joints and fainting spells but I decided that was just normal stuff, you know the one where people say “it’s a bug going around”.  Well I caught a lot of these bugs but I still proclaimed M.E was no more. 

I maintained this position until my mid-thirties.  I studied crystal healing, felt I found the answer to life (otherwise known as spiritual arrogance) and likely became one of those “you can make yourself well if you just believe” people.  Those of us in the ME/CFS community know people like this well. They pop up on Twitter and Facebook as people who have recovered using mind-body techniques evangalising their cure as the cure for all.  I sometimes give them the benefit of the doubt because I’d been there myself.  Enthusiastic, passionate, wanting people to feel as good as I did (by denying when I didn’t feel good).  It’s the same energy as that happy couple who must introduce their single friend to another lost soul so they can have inhabit the same space of bliss.  Or my parents when they gave up smoking.  Evangelising from the perspective of one is neither healthy nor helpful.  All you serve is yourself and your ego.  And I was about to get a visit from Karma to remind me of that. 

2007/8 things started to change. To go back to my analogy, the volcano has not yet erupted but was bubbling below, sending up spits of lava now and again. I had caught a few “flu bugs” that year. I had thought nothing more of them and attempted to shrug them off. I had left the stress of a full-time job behind me, set out on my own to start my own HR consultancy and was loving it. I was single, living with one of my best friends and out and about attempting to be glamorous and sparkling like some London version of Carrie Bradshaw without the shoes (or the fashion sense).

On one of those nights out in oh-so-trendy Shoreditch I was talking to my friend and my throat started to close.  It hurt my chest to speak, not an out of breath feeling but more structural – bones and muscle.  The specialist I saw described it as a “band of conscription” around my upper chest and upon examining my the top of spine declared “oh I do not like that”. And then, as before, a sum total of nothing happened.  Apart from learning new terms such as “pectus excavatum”  and presentations such as “deformity of upper anterior chest wall” and “marked angulation at the very top of the thoracic part of the spine” nothing changed.  Oh and I also learned that my heart was literally not in the right place, pushed slightly further to the left due to the chest deformity but another shrug from my GP meant that this was just something I would have to live with.   

I did ask at the time whether this could be related to my medical history, particularly M.E. The GP laughed.  I complained to the Practice Manager about them laughing.  They replied with a “sorry you feel that way” non-apology. 

You may, if you live with M.E or a similar chronic condition, be wondering if I am describing EDS here.  I may well be, but I don’t think it was well-known then and no-one made or was willing to make the link. And I have not received a formal diagnosis. But whatever it was is back again.  Another semi-explained symptom which had abated is now back along with acute attacks of musculo-skeletal pain.  But, as I said in my previous post, this must just be some weird co-incidence. 

Edited: How could I forget this part of the story? At the same time these structural investigations were taking place I had the scariest 48 hours of my life. I had a heart attack.  Or so I was told.  Repeatedly. 

I saw a cardiologist as my specialist wanted to check whether the structural issues were affecting my heart and lungs.  (Lungs were confirmed at 70% of normal function). I was asked to do a stress test so I ran on the treadmill for ten minutes hooked up to monitors then lay down.  After a brief confer with his colleague, the cardiologist sat beside me and told me that the readings indicated that I might have had a silent heart attack.  They didn’t know when but it was likely. I watched my heart rate race back up to triple digits on the monitor as he delivered that news.  I asked what I needed to do once I could process what he said and he said nothing, just “be careful.” 

A day of so later I was heading from home to meet a friend and was travelling on the Metropolitan line. I felt a tingle which became a twinge then a pain in my right arm.  I became nauseous and found it difficult to catch my breath.  I started to panic and then convinced myself I was having a panic attack and got off the train at Baker Street. The platform was full as it was rush hour. I felt everything close in and then a few minutes later a blur of people over my head. When I came around a little a helpful soul gave me some aspirin suspecting it might be a heart attack. Someone else brought me a bottle of water (Londoners at their finest) and I managed to sit up.  Paramedics arrived and put an oxygen mask on me and bundled me in an ambulance.

That moment, as they hooked me up to an ECG monitor, was the most terrifying of my life. All I could think of was my Uncle Alec who had died suddenly at the age of 36 from an undiagnosed heart condition back in the eighties.  And how old was I? 37.  That was it then, this would be it for me.  The paramedic shook his head when he took the readings and told me it looked like I had had a heart attack. Yes, this was it.

I was taken to UCLH and hooked up to more monitors and put on a drip.  Blood thinners I was told. My now husband appeared after being called by I have no idea who.  I don’t think either of us could acknowlegde what was happening, if anything was happening at all. One of many nurses also appeared, took a reading, and told me again that there was a problem with my heart, but I was in the right place and needed to wait for a chest x-ray and to see the doctor.  A friend and her husband appeared who I had been due to meet up with.  I don’t think anyone spoke and time disappeared into a void…

Eventually, I was called for my x-ray and wheeled there by a stereotypically cheery orderly.  Whatever medication I was on seemed to be working and the whole world seemed to be painted in brighter colours.  I think I even ate when I came back to the ward. Sometime later a young doctor appeared, smiled and started to unhook me.  

“You can go home now.”

We all looked at her and each other and back again not recognising her words. “Yeah so there is nothing wrong.  The leads were in the wrong place, you are fine.” 

In the wrong place. It turns out that my heart, also being in the wrong place, had disrupted the readings.  Turns out that what happened was likely post-exertional malaise after the stress test, but that term didn’t exist then. No-one ever told me why a cardiologist failed to spot that or whether I did have a silent heart attack because, as I said, a sum total of nothing happened after. A common refrain not just for me but many people with M.E. and one of the many blind alleys down which I have been led since I started my M.E journey.

Back to 2008 these pains and conscriptions eventually dissipated and I managed to build my energy levels back up again by resting and a lot of sleeping.  There was always an underlying pain and stiffness but I continued my tuning out trick, further affirmed as a useful technique by a friend who helped people with unexplained pain, because as of yet, I was still wondering whether it was in my head. Running my own business meant I could set my own hours and decide the work I wanted to take on, I am sure that made a difference too so I went back to a mostly normal way of life, denying M.E whilst continuing to have regular bouts of sore throats and flu-like symptoms. Nothing like the range and severity I am experiencing now but as I move my story into the next decade, with its suprisingly hopeful start, M.E was getting ready to resume its position, centre-stage.  

*

Looking back over that decade from the view of now it seems alien to me that I ever lived a life without M.E in it.  I can’t recognise who I was, how I behaved, the absolute arrogance I must have exuded, and the secret underlying embarrassment about a health condition which I had been told, and began to believe, was in my head.  I had been successfully gaslighted into believing there was nothing to worry about. And when something appears to be gone, why would you?

So did it go away?  Or did it go back to sleep?  Or is it possible that it went away and I got it again?  I don’t know nor do I think I will know as I did not have the right people asking those question at the time.  Even I was complicit in denying it’s existence. However my denial whilst it may have worked for a while, even years, did not change the reality that something was there, sleeping inside, and that same something woke up again.  

What triggered it’s re-emergence?  I’ll explore that more in the final part of this story when time and energy permits. [You can now read that story here]  In the meantime if any of this story resonates with you or has triggered you in any way please know that you are not alone.  There are many of us in the ME/CFS community, and also those with EDS, MCAS and other co-morbidities sharing our stories looking for answers. Please do reach out if you need help by commenting below or DM me on my Twitter @KirstieSivaP.  For practical support you can also contact the following:

ME Association

Action for ME

ME Action UK

For countries outside the UK. ME Action has a global reach and is a fantastic organisation for support and advocacy.

Love and light

Kirstie