Living with ME 2017……..time to open up

It’s been 4 years now since I first Googled my symptoms while sat at my desk at work in Gaydon………now I knew I had ME, but to be honest having had it under control for the last 10 years and with life taking over it clearly wasn’t in my mind enough!

Life was busy, I’d just returned to work after maternity leave with our third child.  The work environment I returned to was very different to the one I left.  Our two boys were in school, my daughter was in nursery.  I had no time for myself.  And so I focused on everything else around me and at some point I pushed it too far, and the evidence was staring at me from the top of the computer screen – top results for the symptoms I’d Googled was ME.

4 years later and I’m still dealing with the impact of that relapse.  Now when I was originally diagnosed I was in my late 20’s, living with my boyfriend and no kids.  Life was a lot simpler, this body was a lot younger!  And although pretty much nothing was known about the illness, I tried everything I came across, from weird joint medicines that my mum had seen reported as having a positive impact on ME, to diet and natural remedies such as homeopathy.  And somehow in two years I had got myself back to a place where life was almost normal again.  And by that I mean I was able to do most things I wanted although I still had to make way more decisions each day about what I was capable of than I had before the illness.

This time it’s taking longer.  Not surprising really, I’m older (and feeling it), our base life with 3 kids is full on before I even consider doing anything else plus I think I was in a deeper and darker hole this time.

So the important question is why this blog article?  Why now?  Well, I’ve been fighting as hard as I can for the last 4 years but most of that fight has been invisible, except to my husband, kids and a few very close friends.  And as my dad so very eloquently pointed out to me recently, my life according to Facebook is pretty good.  And that’s because of the type of person I am.  I hate complaining, I hate whingeing, I like to just deal with things and get on with them and only celebrate the wins and the good times publicly.  But what has also struck me from the many Facebook posts I’ve read in ME support groups is that I’m possibly doing this illness and other sufferers an injustice by painting a one sided view.  By only sharing the good times, the wins and the positives in my life it may seem that having ME is no big deal.  And it is.

And so with the start of a new year, with me finally starting to feel like I’m turning a corner and with a renewed determination, I am going to do something right out of my comfort zone and open up about the daily battles and challenges I face with this illness, as well as the wins and positives. My plan is to blog regularly with an update on my journey this year; my goal is to end the year in a better place health wise than I’m starting it. Now I feel I need to qualify a few things here.  My ME was diagnosed by my doctor 17 years ago, and reconfirmed at my relapse.  I have had none of the recent medical tests to confirm this diagnosis but I have no reason to doubt that my diagnosis is correct. According to the charts I mostly suffer with mild ME which can bounce close to moderate when I push things too far. ME seems to be a very complex illness and I’m not suggesting that everyone with an ME diagnosis can improve their life by doing the things I do.  But what I know is that I’ve learnt a lot about myself over the years; I’ve tried most things that have even a whiff of helping with ME and I remain steadfastly positive that I will get back to a place where ME is something I could forget about again (although clearly the trick will be not to completely forget this time!)

OK, time to get on with the opening up part……….(deep breath)

So lets deal with the new year thing first.  This post really should have been posted in January, that’s when the new year starts right?  But January has been a bit of a write off for me, one of the lows in my journey so February it is then! I’m not going to go through exactly what I’ve been doing for the last 4 years, as to be honest it’s been a bit of a blur, but basically I am no longer in my corporate job and I’ve been focused on being ill, on getting better, on being a mum and working on what my future life will look like.  And although those years have been blurry, I arrive in February 2017 with a sense of achievement.  Because I am sure, as I can be about anything, that if I hadn’t made those changes to my life I would have ended up being at the severe end of ME.  And I know there’s no way back from that.  I dodged that bullet and now feel ready to move to the next stage.

What I will share with you is my use of pacing, diet, supplements and exercise which I know can work for me.  But, I am also all too aware that I cannot guarantee that these things will be good for me each day, that they will make me feel better, in fact some days they will make me feel worse.  Each day what I do will depend on where my crash line is, on what I notice about my symptoms and about how I feel. So be prepared, I will not whinge or moan but there will be times when I simply get it wrong and pay the price.

Just before I finish I’m going to push my comfort zone one more time and share a picture taken of me and my husband at the weekend.  We were out for a friends birthday, I was determined not to miss it as she is one of my very close friends,but, as I already mentioned January wasn’t good for me.  This lovely, and reasonably rare, pic of the two of us would normally be buried as I can see the illness in my eyes.  I can see the fatigue, the pain and the despair.  Possibly not obvious to others but it’s what I see.  And whether you simply see a picture of a couple smiling, or if you too can see the illness in my eyes, this time I’m not burying it!




2 Replies to “Living with ME 2017……..time to open up”

  1. Very interesting Jo. I commend you for sharing your experiences with this horrible illness. I have family members that also suffer with ME and will be forwarding this blog to them. Well done Jo and keep up the positive good work. By the way you havent changed a bit from school! You look fantastic xx

    1. Hi Jayne, thanks for your lovely comments! So sorry to hear you have family members with this yukky illness, please let them know I’d be more than happy to answer any questions or swap ideas if they think it would help. You are looking fabulous too, no change in the last (ahem) couple of years since we left school 😉 xx

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