M.E, Myself & I
If you’re reading this and you’re a relative or a friend you can skip ahead since we can assume you already know me fairly well. If you’re not then hi, I’m Lorna. I’m a 31 year old woman living in the North West of England with my husband and my cat. Until recently I was all of the following:
· A primary school teacher
· A runner
· A hiker
· A cyclist
· A cocktail enthusiast
Then after three years of increasingly poor health I was diagnosed with M.E in August of last year, and suddenly my illness just took all of this away. Life as I knew it came to a complete halt.
It’s funny (in a makes you want to cry sort of a way) because obviously I am still a qualified teacher, I still have an interest in or a love of all of the above but when you can no longer partake in them it feels as though they no longer make up the sum of your parts. They become part of the ‘old you’; the pre-illness you. It forces you to re-examine who you are, outside of what you do and there’s a sense of something akin to grief for the loss of your ‘old self’ and you have to learn who you are once all of those identity markers are taken away. I’m not going to lie, I can still manage the occasional cocktail but I feel like an old lady lamenting her lost youth with gin and tonics, it’s not the same. Although I do get drunk much easier now, so every cloud and all that.
Until my diagnosis I had been living in Italy with my husband and working as a teacher; a job that I loved and worked bloody hard to get. I had (still have) a wonderful group of friends in Italy and was really quite happy in the life we had created for ourselves there. We worked hard, we travelled, socialised, enjoyed all the culinary delights that Italy had to offer. But poor health was making it increasingly difficult for me to maintain any semblance of a functional, normal life outside of work. I was barely making it through the working day and started having to spend my evenings and weekends in bed feeling utterly exhausted.
For a long time this was written off (by me and medical professionals) as stress; working in a high pressure job, undertaking my post-grad whilst simultaneously planning a wedding was stressful. But eventually it got to the point where I was in pain daily, had constant flu symptoms and couldn’t even walk up a flight of stairs without needing a rest and I simply couldn’t carry on. After two years of tests, referrals and tears in my GP’s office I eventually, FINALLY got a diagnosis. The relief was immense. At last I had hard proof that I wasn’t just being soft or not coping with the demands of life. I had an actual, medically-certifiable condition. Now I had answers I could finally receive the support and treatment I needed to begin my recovery and return to full health, right?
A year later and I’m still asking that question.
M.E, Myself and Myths!
Before we go any further I felt I should clarify a few things about my condition because I know it is still widely misunderstood. I’ll start by telling you what M.E isn’t:
· ‘Just being tired’
· ‘All in your head’
· Contagious (I wish I didn’t need to point this out but you’d be very surprised…)
· Being depressed (although mental health issues can certainly be a contributing factor, or arise as a result of living with this absolute horse turd of a condition)
· Something that can be slept off or medicated
M.E, Myself and the Science bit…
M.E stands for Myalgic Encephalomyelitis but is also known as Chronic Fatigue Syndrome or CFS. To be completely honest the name CFS grates on me a little because there is so much more to this condition than just the fatigue (plus M.E just sounds fancier doesn’t it). Anyway, M.E (ooh, fancy!) is a systemic neuroimmune condition that affects an estimated 250,000 people in the UK alone. There is currently no known cure. The following is a list of just some of the common symptoms:
· Extreme physical or mental fatigue which disrupts (or completely prevents) regular activity * Post-exertional malaise or PEM: this basically means that any activity can lead to a severe worsening of symptoms e.g. – I usually need a 30 minute lie down after taking a five minute shower
· Debilitating pain: a real bummer, no?
· Sleep disturbances and unrefreshing sleep (meaning I can sleep for 10 hours and it makes bugger all difference to my symptoms)
· Brain fog or cognitive dysfunction if you want to be posh: when I’m extremely fatigued I can struggle to put a sentence together which is painful for someone who likes to talk as much as I
· Severe immune dysfunction: please, please keep your germs away from me as my body can’t fight them like yours can and it can cause me to crash
· Sensory sensitivity: a lot of people struggle with light but my main nemesis is sound (ironic for someone who was told she was loud her whole life)
The following is a list of less commonly known symptoms, taken from me:
· excessive interest in one’s cat, bordering on the unhealthy
That last one isn’t medically proven or anything, but I think a quick glance at my Instagram would be proof enough.
M.E, Myself and My Life Now…
So here I am, a year on from my diagnosis and life looks drastically different. My husband and I packed up and moved home to be closer to family and to be able to access what medical support was available here for my condition. In Italy the most support I had received from my doctor was a referral to a specialist who told me it was all in my head or that perhaps I had HIV. I wish I was kidding. I’m no longer able to work and am mostly housebound. I do manage to see people and get out sometimes, but it often takes me a day or two of bedrest to recover from this. I can walk for perhaps 10/15 minutes tops and anything beyond that requires use of wheelchair. Any activity, large or small requires careful planning and pacing to ensure I don’t crash afterwards. All in all, it’s been a pretty testing time. Over the course of the last year I have had some support through the NHS (we’ll come back to that at a later date) but I eventually exhausted that and began what can only be described as a journey of exasperated experimentation with diet, supplements, alternative therapies, yoga, meditation and everything in between.
M.E, Myself and Misadventures…
Over time I’ve found coping strategies that work and tried some that absolutely did not. I’ve learned (with some difficulty) to accept my body’s limitations for now and instead of fighting it, I’m learning to celebrate the small wins when I can. After being diagnosed I went through a hard time in trying to accept my new reality and what really helped me was to talk to other people online about their experiences of M.E, in order to feel less alone in this weird world of invisible illness. The aim of this blog therefore is to act as a guide, a reference point, a source of comfort to anyone else currently navigating this frustrating and often lonely journey to acceptance and recovery. On top of this, if tales of my misadventures can clear up the many misconceptions surrounding M.E and help to raise awareness of what life is like for people living with it then I will not have blogged in vain.
Thanks for reading, see you back here soon. I promise the next one won’t be so long, I can’t promise that it won’t reference my cat.