October 2017 – that’s when I got ill with the virus (no, not the Corona-one!)
Since then, life has changed.
ME has changed my life.
ME is Myalgic Encephalomyelitis. It’s a confusing disease – from becoming ill, a diagnosis by exclusion through to potential treatments and management plans. There isn’t much clear cut about it. I look reasonably normal – you might see me enjoying life but what you don’t see is when I’m lying in bed aching all over, the payback after I’ve spent time enjoying things how I used to, the mental fog/slowness which comes with the disease.
There’s lots out there describing what ME is – Action for ME and the ME Association both have lots of information on it and a good place to start. Others have spent much more time defining and writing about the illness so I’m not going to try and do what others can do better.
There are different names for ME – ME, Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue (PVF). I prefer the term ME as the other terms suggest it’s about just tiredness and exhaustion – it’s not. I often use the term ME/CFS as if you google just ‘ME’ … you can imagine …
And yes I’m the first to admit that before getting ill – I thought it was like burnout and burning the candle too much at both ends, not a real illness, something that with enough rest you could get over, maybe just a mental illness, not something that would affect me.
It is real though , it feels real – it feels frustrating, I wake up aching, I’m aware my brain doesn’t work as well as it used to, I can’t do VLOOKUPs anymore easily, I second guess what the impact of things I’m doing will have, I question having fun with my kids and whether it’s worth the payback I’ll get later on, I wonder what value I have if I can’t provide for my family, what sort of role model am I setting by no longer working … the list goes on …
On a positive day – I realise I have more time with my family, I treasure the small things more, I realise that life changes and this is just part of the journey.
ME has changed my life and life changes with ME as I learn more and grow more with this illness.