Today marks the 13th anniversary of the start of my life with Myalgic Encephalomyelitis. Unsurprisingly, I won’t be having a party to mark the occasion.
To clarify, it is not the 13th anniversary of having a diagnosis of M.E (I was diagnosed as having C.F.S by a GP 2 and a half years later) but it marks the date my M.E was triggered by Labyrithitis.
I can pinpoint down to the hour when my symptoms started. I was on a car journey returning home to Portsmouth after attending my graduation ceremony in Plymouth the day before. It started in an instant. I went from feeling absolutely fine to wanting to be sick and not being able to see properly. The car journey was supposed to take no more than 4 hours but I had to keep asking my Dad to pull into rest stops so I could be sick. It took us over 6 hours to get home. I went to bed as soon as I got home. My M.E life started at around 11am on the 18th November 2006.
The following day, I woke to find my room was spinning, I was unable to stand up without toppling over, had kaleidoscope vision and repeatedly vomited, I had the same telephone conversation with my GP as millions of other people who have experienced this inner ear infection –
Me – How long before I get better?
GP – You’ll be back to normal in around 6 weeks.
I was one month into a post-graduate degree at the University of Portsmouth, I saw this ear infection as a massive inconvenience but at least I had an end date to work towards. I notified the University that I wouldn’t be able to attend lectures for a while and they agreed to provide handouts so my studying wouldn’t be overly affected. I told my employer that I wouldn’t be able to work for a while and had to bite the bullet and recognise that I wouldn’t be earning a penny until I was better. I ‘recovered’ after 6 weeks, I wasn’t completely fit and well but was able to get back to attending lectures and doing bar work. I needed the cash so screwed my smile into place and got on with ‘getting back to normal’.
Two weeks later, it hit again.
Again, I was told I would ‘be back to normal in around 6 weeks’. But this wasn’t the case this time. The being sick stopped after a few days but the dizziness, vision issues and lack of balance remained. Lots of other symptoms came to join the party too. I now know these to be symptoms of M.E – Memory issues, slurred speech, I.B.S, light sensitivity, noise sensitivity, Orthostatic Intolerance, very bad headaches, etc. Weeks turned into months, months turned into years. GP check-ups turned into referrals to specialists to rule out worst-case scenarios – brain tumour and blood cancer to name a few.
There is no diagnostic test for M.E.
GPs would send me for routine blood tests at least once every 6 weeks in the hope that something would show up. What I want everyone reading this to understand is that M.E does not show up on any routine test or scan. When all tests come back clear patients find GPs doubt that there is anything wrong. We get our diagnosis when everything else has been ruled out.
We desperately need a diagnostic test (and treatment), that’s why Foggy and I work so hard to raise research funding.
Instead of a diagnostic test, we have diagnostic indicators. You can find these here – https://www.mefoggydog.org/about-me/
The reason I consider myself a M.E patient and not a patient with Chronic Fatigue Syndrome is because I meet the M.E diagnostic criteria. None of the GPs I saw during my diagnostic process considered these diagnostic criteria, they chose instead to focus on my fatigue. There are a number of different criteria (Canadian Clinical criteria, London Criteria for M.E, International Consensus Criteria to name a few) and I meet all of the indicators included in them. I self-identify as having M.E. Most importantly, I experience Post-Exertional Malaise (also known as post-exertional neuroimmune exhaustion) the key defining characteristic of M.E.
With hindsight, how would I have felt if my GP had answered my ‘How long before I get better’ question with ‘I don’t know. It could be decades or never’. How would I have felt then? As distressing as it would have been to hear the news, it would have been more accurate. Here is the information about prognosis on the ME Association website-
What are the Chances of Recovering from ME/CFS?
Most people with ME/CFS fall into one of four broad groups:
- Those who manage to return to normal health, or near normal health, even though this may take a considerable period of time.
- The majority who make some degree of improvement but eventually tend to stabilise. They then follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
- A significant minority of patients remain severely affected and may require a great deal of practical and social support.
- Continued deterioration is unusual in ME/CFS. When this occurs, a detailed medical re-assessment is advisable to rule out other possible diagnoses.
13 years in and I fall into category 2, my M.E has stabilised. I find new symptoms crop up occasionally, pain is a new thing for me, but the severity of my M.E has leveled off. I have good and bad periods of health but when I ‘get back to normal’ it’s at a stable level that I can manage, though with difficulty.
Only 5% of M.E patients ever fully recover.
13 years ago could I have ever considered that I wouldn’t be better on the 18th November 2019? Could I have known that something as innocuous as an ear infection would turn my life upside down?
13 years of feeling unwell from the second I open my eyes in the morning.
13 years of never feeling any better than as if I have flu.
13 years of unrefreshing sleep.
13 years of never being able to push past my energy envelope.
13 years of having an illness that has many question marks over it, so much so that many medical professionals doubt it even exists.
Trust me, it exists and 17-30 million patients are proof of its existence.
and Foggy (Obviously)