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.

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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.

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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.

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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 ...

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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.

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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 ...

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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.

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ME has changed my life and life changes with ME as I learn more and grow more with this illness.