Then… And Now – What having ME has taught me.

ME has overshadowed the whole of my adult life, and affected me badly twice: the first time when I was 22, and the second time starting over 3 years ago….

In 1993 I was first diagnosed with ME. That is to say I diagnosed myself and found a Doctor who knew what ME was and he agreed. Yes, I had ME...and I had to go home, rest and wait to get better. I felt as if I was staring into a void- I had no idea what that would mean or how I would cope. In 2015 I reluctantly had the same conversation with my GP- Could ME be responsible for the intolerable pain and other symptoms…? It was a conversation I had avoided having with myself, for some years.

Having struggled for years to continue part time working, I am now home and resting, and waiting again...and feeling very blessed for every scrap of life I have lived outside of being horizontal and being held hostage by my duvet. I am 48 now, and as a middle aged goddess ( I like to dream), I am looking back at my skinny little twenty something self, and wishing I could fast track her to the things ME has taught me:

1) Exercise Won’t Cure You.

This has been one of the toughest lessons, and one I have to relearn again from time to time. In a world where ‘sitting is the new smoking’, I must spend my life LYING DOWN!!!! Now I am approaching menopause every book on the subject recommends exercising with gusto! Want to get rid of those excess pounds? Feel suicidal? Sweating like a ham on a hot day? Exercise will sort you out!!! ( I try to avoid the subtext that Drs and self-help books are sending angry, hormonal women as far away as possible).

Like many of you on here, I LIKE being active, the fresh air, the endorphins...the feeling good about your body- Tick! Tick! Tick! But...the unappealing truth is that you don’t get something mended by using it when it’s broken.

My body has ME...and it’s broken.

2) Rest Won’t Cure You either.

You know the drill: you have been imprisoned in your bedroom for so long you feel like you will barf if you have to spend another day staring at the pattern on your duvet/dust on the window sill/ that spider in the corner who is building a web just to mock your inactivity….You feel like pressing your nose against the glass of the window and mouthing the word ‘H E L P!’ ( if you could find some way to propel yourself off the mattress), and you needed to pee urgently an hour ago, but you still can’t find the energy to move….

There is a sense of entitlement that comes with having spent days, weeks and months resting- it is HARD work and you should be steadily building up to some payback- right? Nope. Resting is to ME exhaustion what moisturiser is to dry skin-necessary but ultimately ineffective. It feels as if you save enough Rest Miles then you SHOULD earn something. A toaster? A discount trip to the London Zoo? Enough energy to shower without making you feel like you have the flu afterwards? So much rest that my system mends? Nope. Nope. Nope, and...Nope
.Because….when something is broken, you can set it down to rest all you like, but the pieces won't magically put themselves back together.

3) Pyjamas- the Naked Truth

Buying pretty clothes is fun, but ultimately you are only going to see them when you open the wardrobe door. Like it or not you are going to be wearing a variation on Pyjama tops and bottoms. I would like to say to that 21 year old hellyphant- yeah , enjoy those hot-pants and mini skirts- ‘cos long and baggy is where the future is heading!

Elastane or Lycra will offer strength and keep your PJ’s in bottom- hugging shape but cover you in sweat, Cotton will bag and crinkle. Black won’t show tea stains, but will get coated in dust and dander. Lighter colours will magnetically attract any substance in a darker shade ( Biro, egg yolk, sweat). The choice is yours. Oh yes, and heels and bras? Forget it.

4) Being Fat is not the Worst Thing in the World

When I was 22 it mattered to me A LOT how I looked. I was as thin as a stick but was going to spend the next 26 years worrying that I was about to get plump. I vowed I would ALWAYS exercise and take care of my body.

Fast forward to January 2017, and frankly we all have bigger things to worry about than how I look! Seriously, it is one of the joys of being older that there is huge relief of realising that whilst it is nice to make an effort sometimes, looking attractive everyday with a chronic illness is just not possible. BTW: I AM fatter. I don’t enjoy it, but I also know it doesn’t really matter- ironically I eat the healthiest diet I have ever done ...but ultimately Amiltryptyline, my sweet prince of sleepy time, was my nemesis….

5) The Internet Will Set You Free

It was a lonely business being chronically ill in the 90’s. The long days home alone were silent and endless. The Internet had of course been invented, but for most of us it was something for special occasions or work. Communications between us disaffected sufferers was via a lengthy magazine that plopped onto the doormat every quarter.

Fast forward to today- well, you are reading this on a laptop, tablet, phone or even your watch (!), The burbling of a fellow suffer, from what might be a different continent to yours-is fully accessible to thousands of other PR’ers. Amazing!!

Aside from all the wonderful people we can now connect with, there are online interest groups, medical info, recipes, music on Youtube, Museum collections to browse, podcasts from around the world, sports and films to watch, games to play, research to help you discover your genealogy, and ways to share your thoughts, creativity, and count penguins as a researcher (-see my thread on ‘Community ‘ about Mars Research.) You can also be guided to new friends by your interests, your beliefs or your illness. And of course our own online city of the sick.

None of this is in any way compensation for the loss of the life lived first hand, but I urge you to think about how the 18,000 people sick with ME would be coping, ( without updating themselves on medical info, writing poems about their day, helping each other out with advice and recommendations, sharing music and comedy clips and keeping each other going with emotional support), if they didn’t have Phoenix Rising...

So from my menopausal hellyphant back to the youthful- trunked version of me I say: hang in there. It's not going to be easy, but it is also not going to be all bad either.


Love this, so positive! And I've come to the same conclusion about my PJs, I spend more time in them and my hubby's tops over leggings than I do my 'outside' clothes. Is it weird that we have separate inside and outside clothes? Only just realised that might be odd!
Inspirational words warrior goddess! (You'd obviously be a warrior type of goddess!)
What a fantastic rant! I, too, am a middle-aged ME sufferer building up a wardrobe of trackie bottoms and sweatshirts, surfing t'internet, and learning that how you feel matters a hell of a lot more than how you look.
This was good to read, I am a mum/carer of a wonderful 26 year old daughter diagnosed with ME 18 months ago. I have so far avoided blogs in an effort to remain solidly optimistic about her future and yet the last few weeks have seen her go from being able to get out in a wheelchair to now mostly homebound. Humour seems to be the best medicine, I will be investing in some whacky PJ's for her and keeping track of people like you to keep us going!!!
Thank you for such a nice response to my rant!!! I was a bit worried about this forum making me feel negative when I joined too...but it is really a place where on my darkest day someone will be making me laugh or grateful. If you're new to the site, you can find all the 'entertaining ' stuff in community in the first section on the home page: There are limmericks, pics of cats, info on birds, stuff on reading, tv, great music...lots of fun stuff. We also sometimes have a 'virtual' day out!
Rant away. I am new to ME- awaiting a formal diagnosis. I am 51 and live in Miami. I've first started experiencing symptoms about 4 1/2 years ago. I am still searching for the right doctor who won't tell me that they can't find anything wrong with me. I am enjoying reading your blog and find it very informative. I have also found myself embracing sweat pants and wishing bras were never invented. I also miss my heel especially my boots. I hope today is a good day for you.
Really looking forward to my free toaster! yes it's so frustrating..... people still ask "have you been resting?" as if it makes a sod of difference, it's just a necessity not a lifestyle choice!

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