Not giving in to ME (myalgic encephalomyelitis)

So this is my first bog post (nervous or what?!) , and I had to start with this – not giving in to ME.  It’s really important to me at the moment, the last three years of my life have been dramatically affected by myalgic encephalomyelitis but I still refuse to give in to it or let it define me.  Now I’ve had ME for about 15 years now, and I was very ill for the first two of them, but I then had it in control for ten years.  When I say in control I guess it never really goes away, but, for those ten years I pretty much lived a ‘normal’ life.  In fact so normal that I actually googled my symptoms just over three years ago, I searched on “feeling tired, can’t think straight, headache” and there towards the top of the results was the NHS Symptom checker for Chronic Fatigue Syndrome……..you can imagine how stupid I felt!  I was sitting at my desk at work at the time, having another ‘bad day’ of just not feeling right, getting increasingly frustrated at not being able to do my work the way I wanted to and there was that page, on my screen telling me what I should have already known.

To be fair, as much as I was kicking myself for not realising what was going on, in a way it was also a relief. At least I knew what I was dealing with and at this point I was very confident I could pull it back quickly.  Over the ten years I had learnt to listen to my body and make tweaks to my life in response.  Things like prioritising my trips to the gym even when I was struggling to fit them in around work/family life, pulling back a bit on our crazy life for a while, re-focusing on eating healthily and giving myself a break.  I honestly thought that I’d be able to get it in control in a few weeks.  But I did recognise that I hadn’t felt this bad for a very long time, and I was sensible enough to start telling people about it. I knew I wouldn’t be able to pull it back overnight and other people were beginning to notice so I told my husband, close friends and a few people at work (but just those who needed to know like my boss, HR and my team).

And then I made the changes that I was used to making and waited to see how long it would take to see the improvements………….except this time I got worse, not better.  I’m going to massively skip over the last couple of years except to say that it saw me leaving my corporate job of almost 25 years (not just because of the relapse but it payed a big part),  my marriage went through a really tough time, financially things were tough and the illness made me well, a little grumpy!  If this link makes sense to you then you’ll understand where the grumpiness comes from! https://constantfuckingshit.wordpress.com/mecfs-explained/

What I really want to share with you in this post is that I HAVE NOT AND WILL NOT GIVE UP!!!   Some days I’ve given in to the ME, some days I’ve fought it and lost, and a lot of days have been REALLY hard……but, at the beginning of this year (a year after I quit the corporate world, and 9 months more than I thought I’d need to get myself back in track), I started to feel OK and more like myself for the odd half day here and there.  Over the weeks/months this has increased to feeling OK for a whole day at a time and then to a couple of days in a row. I still don’t have good days all the time, but, just a couple of weeks ago I had a day where the ‘old me’ was briefly back.  Not just me feeling OK and not swamped by my symptoms, but the driven, excited, passionate and wanting everything life has to offer version of me.  God it felt good! It has driven me to do this, get online with my business, which was the direction I originally intended to take it.  I feel ridiculously positive about life, I’ve made some really big changes over the last couple of years which I’m realising how much I absolutely love……being mum at the school gates, putting my kids first, ditching the hours in the car driving to the office for bike rides through the park to school with  my kids…….not new changes but somehow I’ve never appreciated them in the way I do now.

 

If you have ME/CFS or whatever they’re calling it at the moment, please don’t give up either.  Yes, days can be hard, no people don’t understand, yes life can be tough but no, this doesn’t have to be it!

Thank you so much for taking the time to read my first ever post, I plan on sharing my experiences/tips on how I cope/push my illness so please pop your details into the box to the right to be notified of new posts.

 

Jo Davies – married mum of 3, ex-corporate girl who made the massive decision to make the life of my dreams all while living with ME

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