Posts

Featured post

Who is The Chronic Elephant?

Image
ME and Chronic pain keep me bed-bound... and creating art and writing blogs keep me sane.

I blog 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..
The images posted on here are of me reclaiming my life and living it one tiny bit at a time. You can see art 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.

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





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 l…

Taking Dysautonomia with a Pinch of Salt

Image
In this final part of this mini series on all things POTsie, I will try to give some idea of how I self manage. 

 To recap-  I had been diagnosed by a Dr. who had tested my heart, and  had done blood work etc AND was experienced in seeing many patients with this condition.  Yup....I had Dysau...Dystau......Dystort......well, anyway....I had this ...er ...problem, and aside from learning to spell the wretched thing, I was going to have to learn how to manage, because, as usual, there was not going to be a magic cure on the horizon.


So this is my list of things to keep in mind, if I want to make the  ' the fainty- wobbly-sicky-horizontal-experience'  less likely:
THINGS THAT MAKE DYSAUTAUNOMIA WORSE: Becoming dehydratedIgnoring hunger pangsStressME flare-up ( be on alert that this makes 'a sag to the floor' far more likely)Any activity that makes my heart beat faster.Sitting upright when my body is begging me to rest flat ( with legs raised)Hoping if I didn't plan for it…

Elephant Down!- What the heck is Dysautonomia ?

Image
Welcome back to my 'Idiots Guide to Dysautonomia'( that's me that's the idiot, not you! ) 

So how does Orthostatic Intolerance feel? I feel really YUCKY ( to use a technical term), before, during and after. My heart beats heavier.The sudden onset of cotton wool legs feel as if they are bowing out from under me. It is all very unpleasant. Strange sensations in the abdomen, disruption to my vision ( I literally can't see straight). My body craves food, I feel dry and thirsty. I find talking difficult, thinking the words, then saying them is a struggle. After I have got to bed, I feel very ill, a sensation not unlike the high temperatures of childhood fever. I can't move, even raising my head  onto the pillow is very difficult.
It is all so sudden...and no it is not a panic attack- those feel very different. With Dysautonomia my energy is too low for panicking, or even forming cohesive thoughts. I feel as if I am slipping away....but I don't really care either wa…

MINI: 2 THINGS TO MAKE YOU GO :-)

Image
So, this is part of an intermittent series about things that inspire me- not only creatively, but that make my heart and soul sing joyfully.

I know that many of my 'Chronically Lovely' friends, like me, are flared- up at the moment. 

Many more 'normal' folk, find the changing of the season a daily battle against negative feelings, grey skies and shorter days.

It is frustrating when I am too sick to make art(!)- but thanks to Professor Google,I can still enjoy some lovely nibbles of other people's creations.

Those of you who know me or regularly follow my Blog or Facebook page, will know how important colour is to me. Colour feels like the fuel in my engine. 

I have rediscovered two sources of inspiration about colour:

The History of Art in Three Colours- a wonderful 3 part,  BBC Documentary. If brain fogged, you can enjoy for the photography and colour, and if up for learning some new stuff you will be really fascinated.  Dr James Fox guides us around Gold, Blue and Whit…

Fainting by Numbers - Dysautonomia Part 1

Image
There was the time, 28 years ago, that I spent August Bank Holiday weekend in hospital instead of attending the Notting Hill Carnival in London. There was the plane journey from Gatwick to Milan where I passed out repeatedly, ( whilst sitting down !). And there was the ultimately embarrassing situation where I stopped the Milan rush hour traffic, when I slid slowly down the  tram pole I was clinging to, like a weary stripper...and woke up with an ambulance man interrogating me in Italian! There have been other times, other places and many near misses, where I have lain flat, or just got to bed in the nick of time....


The pattern with the hospital admissions has always been the same: I am taken by ambulance, and after some hours am released, exhausted but with clear round of tests and an armful of saline drip. 
Aside from the anxiety surrounding the prospect of waking up in front of strangers ( have I peed my pants...and has someone nicked my purse?) and having no idea where I am...there…

Diary of a Menopausal Elephant. Aged 49 and 3/4

Image
I have always enjoyed reading the published diaries of others, even the fictional ones. This is year Adrian Mole, the brilliant comic creation Of Sue Townsend, would have turned 50. As Ms, Townsend, is sadly no longer with us...there will be no more diaries. He and I have grown up together, and I feel his life has often mirrored my own in it's unpredictability, and unlikely romantic relationships. 

Age 13,( yes, he and I are pretty much the same age), I was listening to BBC radio, when the first 45 minutes of 'Adrian' was broadcast. It was (in my opinion) comedy gold, and I have since read all the books, which I would thoroughly recommend for easy reading laughs. 

I have never managed to write a diary for pleasure. My attempts as a child. 
'Woke up. Got dressed. Ate breakfast. Walked to school'.  were boring even to myself, let alone future generations. Nowdays I  keep a brief daily diary of symptoms, pain levels, and list medications ingested, as an aid to self-mana…

Disability Anniversary??

Image
This time 18 months ago, I was struggling to accept...( or even to refer to in speech), the 'D' word- Disability. The day my spouse asked if I thought I could be classed as Disabled, I felt a sick pit of dread opening up inside me.The road from there until here, has been an stony and uphill route. Illnesses in my mind imply a temporary state, something you will get better from, and Disability sounds a lot more permanent. 

Not everyone with a Chronic Illness would be classed by themselves or other people, as being Disabled. In my case, the limitations that my body place on me, and my complete inability to do things that I NEED to do, have made it a no-brainer.


Accepting the situation is not so straightforward. There are times now when I feel really comfortable with asking for the help I need or with other people seeing me as disabled...and times when I really hate it. Times when I can see how much I have grown because of my disability....and times when nothing feels possible.


I he…

Spot The Difference!

Image
Here are two photos: One is a photo-library image of:  'Woman with CFS,'
and the other is what you look like when you have ME/CFS. 
Can you spot the difference?! ;-)



In this Blog,  I am going to compare my 'image' as a 'vertically challenged, bed-dweller, ' with probably the most famous artist to ever rest a paintbrush on her blankets :Mexican surrealist painter Frida Kahlo (1907-1954). How very dare I?!!  For anyone not familiar with her work: can I suggest a lengthy visit to Professor Google, who will be happy to show you many fine examples of her paintings. Including many self portraits. 


It was when I was contemplating asking my husband to take some photos of me drawing in bed, that I realised just how tricky a thing this is. To explain we will need to take a closer look at Frida  Kahlo at work- or more correctly, how she was portrayed when she was at work.

Any artist from the advent of commercial photography onwards, has had the additional decision to make of w…