Wednesday, 25 January 2017

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? Running 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….


T
here 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.

Tuesday, 24 January 2017

Who is The Chronic Elephant?

The Chronic Elephant?


I am a 49 year old disabled artist living and lying down
(a lot), in Dorset in the South West of England. I have ME, which I have had for a long time and Chronic Pain, which only joined the party in recent years. 


I have been writing blogs on ME and disability for the last year using 'the elephant' avatar and name. It started as a joke...(I am not likely to be wandering 'back to the jungle' anytime soon)....but I think the little pic of that little elephant holding a cheery flower represents me well.
I often feel like a large restless animal stuck in a small enclosure, but I hope I remain friendly to life and to people.




As Hellytheelephant 
I create art and write blogs, as a way to occupy my brain and heart, when pain seems to be rudely pushing me aside and taking over my life. The images posted on here are of me reclaiming my life and living it one tiny bit at a time. You can see works inspired by my everyday life, about coping with life in bed, and images of flowers, plants, imaginary worlds, my faith and my felt tips.

 Writings are about how to cope when pain is bad, what it feels like to receive well meant advice ( don't do it people!), how to keep your faith when you don't get better, explorations into planet Gluten Free, and how to avoid steering your disability scooter through something the dog owner should have bagged and binned..

You will also find my mumblings- writings, thoughts and blog entries, about being me and about having ME!



 This is NOT the blog for you if you want to find a lot of technical stuff about art or if you want to know if you have ME or how to treat it.

If you DO want art with heart, and insight into being disabled and chronically ill, and words that will make you think even more ...then you are in the right/write place!


Ok...so buckle up, and don't forget the bananas...it's going to be a fun ride.

info on campaigns for treatment and research  https://www.actionforme.org.uk/
the largest worldwide forum for ME sufferers and their carers:
phoenixrising.me

Info on Helly :

FB: Art by Helen Harley
email for how to buy pilsdon.org.uk charity cards.
email: helenharleyart@gmail.com