Monday, 14 August 2017

History of (Elephant ) Art - Pt 1 The Art of Growing Up

I am feeling somewhat red in the face...and it's not a hot flush ( for a change). This blog is subtitled as being about 'Art, Life and ME'  and you have heard me wittering about my medical ailments, I have introduced ME as the Diva in my life, chucking plates because the M&M's are not the colour she ordered. I have talked about life with disability: it's adaptions to this 'new normal'...and the things that help me to find peace and joy.

I am embarrassed to say that I have neglected to write much about the nuts and bolts of  me as an here goes...a whistle-stop tour to give you a flavour of the history and evolution of my art from pint-sized pachyderm to ...the (slightly) more wrinkled and definitely happier heffalump of today.  

So let's start with the tiny me, chubby crayon in chubby fist tongue slipping out in concentration. I cannot remember a time when I didn't draw. There was always a huge pile of scrap paper I would speed through. I remember the excitement of first lusting after, then receiving my own, my very own set of 40 glorious felt tips. The black was always the first to wear out, as I would use it to outline my drawings before filing them with colour. 

 At school we were made to sit in front of a series of ( frankly very dull) still lives ( I have never wanted to draw a cheese plant since), and I was constantly told off for my drawings not being 'life-like' enough. At age 18 I applied for a Foundation Course. I turned up with a folder of really interesting and original work I had created in my own time, which put all my A level work in the shade.

Life Drawing Class

Life Drawing Class

I went on to be incredibly lucky to have  a wonderful year with about 100 other students at Wimbledon College. At last- I got to spend all day doing what I loved: drawing! We did a tonne of life drawing and once I'd got over the shock of getting up close and personal with a completely nude stranger, I shone.
Life Drawing Class

Life Drawing Class

In the first term we were put through a rigorous and exhausting regime of drawing, textile design, theatre design, pottery ( when I created the first in a college career of elphant turds), fashion design, graphics, and product design ( in which I got the lowest mark of the whole year!) We did art history and it was an incredibly nurturing and creative environment.

 I also saw Paris for the first time, tried on theatre costumes for a fashion show ( the fairy must have been size zero, as I couldn't get the tutu up over my tiny bottom), and at the end of two terms, my folder full of illustration and drawings  and I were offered a place at Harrow College ( Westminster University). I was attracted by the Illustration Course with it's fine art and drawing bias...and an animation department, as I wanted to be a stop frame, animator.

 We were taken out to draw on the streets of London, then on a trip to Paris, to sit in Parisian markets and cemetaries,with huge drawing boards. In my spare time I filled numerous sketchbooks drawing around the clock. The hours were long...and I made yet another elephant turd ( this time decorated with inspiration taken from the British Museum), but I learnt so much. I made a couple of drawn animations- one set in nightclub with a Bee Gees track, and one quite abstract piece to a Sting song. Happy Days!!! 

Unfortunately, I had come from being a big fish in a small pond on Foundation, and now everyone on the Illustration course was really, really good! Add to this being away from home for the first time, realizing I was not destined for the world of animation, and being quite shy, my college years were not without difficulties. I found the criticism quite brutalizing and was quite lost creatively until year 3. 

College Project: Illustration for 'James and the Giant Peach' -the children's book by Roald Dahl

College Project: Illustration for 'James and the Giant Peach' -the children's book by Roald Dahl

A Book Cover Design as part of my final project for my Degree Show

I had already decided to work as a freelance illustrator, and after graduation began touting for work. Finding out the name of an art director, cold calling them to make an appointment and pitching up with a folder of artwork was the part of my new job I really didn't love. I got  some work, but life was about to throw me a curve-ball... and eventually lead me back to those felt tips!


Monday, 7 August 2017

The Twilight Zone

Some of you may be aware that for the first time a full length film has been made about the experience of living with ME, and how society and the medical profession see those patients with ME. I have not yet seen the full film, but the three times I have watched the trailer, I have had tears streaming down my face. It is heart-rending to see film of her before the illness- she is running around on home movie footage, scuba diving, and on her wedding day....then her words: ' I thought I would have longer..'

I have never seen 'my' story on a film before. It upset me more than I can say to see ME from the outside looking in. I thought I would have longer too...

The Jen Brea documentary 'Unrest' will be released in the UK in the Autumn. It has already been heaped with awards in a variety of film festivals in different countries. Jen was a Ph.d student at Harvard University when she became suddenly ill with a high fever and became bedridden. She was initially diagnosed with conversion disorder, and eventually with Myalgic encephalomyelitis. Her own treatment ( both in terms of the medical provision she received and how Drs treated her), prompted her to tell her own story..In 2013 she began making a documentary from bed about her experiences, and also to express the lives and thoughts of the friends with ME that she made via Skype.

As a gifted and exceptionally articulate young woman she has bought discussions about ME into the public arena and has been almost universally ( silently) applauded by ME patients worldwide.  Jen has a wonderful way of public speaking and of raising issues that have not been discussed ( ever) in such a high profile way. Her TED talk crashed the internet, and it is wonderfully expressed....and please remember- Brea is doing all this whilst feeling horrendously ill and exhausted. I urge you to watch this- people need to know how serious this illness is. That is the only way we will get the adequate funding that is needed for research that will discover the bio-marker and lead to effective treatments.

If you are reading this and you have any one of a number of chronic, but poorly researched and understood conditions, you will no doubt have your own horror stories about physicians. Doctors are not intellectually or emotionally prepared to fail at what they do, and it manages to be both shocking, yet not surprising, to see the attitude of medics change when it is understood that your ailments are not acute, but chronic.  We are the patients who have to have the news broken to us, that we are not going to get better- that is not why Doctors spend years training. They train in order to cure people- we make them crash up against their limitations.

Many conditions we now understand to be physical, were originally thought of as psychological: asthma, arthritis, MS, epilepsy...

Many who live with ME, exist in a twilight world of solitude, drawn curtains and no light at the end of a very long tunnel. With no treatment offered in the UK other than CBT and graded exercise ( almost guaranteed to cause patients to crash- and I speak from experience.) patients are assumed to have developed this illness to serve our own purposes...and are refusing to get well.

I hope I live long enough to see attitudes, research funds, and effective diagnosis available to patients with ME. In the meantime, watch the trailer and await, what sounds to be a very interesting film, made by a very courageous woman.

Tuesday, 4 July 2017

Things I wish Someone Had Told Me About When I first Got Sick.

Hello again! Still here, still sick, still blogging...and still smiling!!

I have noticed that a lot of chronic health blogs feature recommendations

of products/supplements/foods that help the blogger with pain and

health.  I have ingested supplements,drunk Turmeric tea, eaten

flax, drunk lemon water, slathered my pain with creams and aloe and

stuck TENS pads to my bum…. none of it has worked more than in

the short term, and certainly not as well as good 'ole Tramadol... This

elephant, has her four feet very firmly on terra firma- if not usually resting

on a mattress.

The things that help me ( with some exceptions) tend to the practical.

This list will not take away your pain, make you thinner or help you

tolerate more exercise. These are the things that I think should be

recommended in the Rough Guide to Being Chronically Ill.

It has taken years and a lot of wasted cash to get to this

point, so I hope that some of these things prove useful for you.

I do venture into the territory of 'the thing that dare not speak its

name'  (a portable urinal.) If you are likely to be offended at the thought,

please stop reading.

Here are 16 things that have improved the quality of my life...though sadly not the quantity of my


1) Medications box.

A whole month of  colour- coded and dated

medications and supplements. Fill up once or twice a month. You can tell

at a glance when your meds need to be reordered, and if you are going

away you can grab a few days only. I only wish I had got one sooner.

2) Ebay-

Everything I used to buy from Amazon I now buy from Ebay

without paying ludicrous postal charges. Also brilliant for clothes and

bulk buying psillium and herbal teas, essential oils.

3) My Scooter

Me, my scooter, my sunblock ( on face and hands), my sunnies, my stick, and my cross-body bag ( on lap)

4) My Diary- Family Life Book

"Dear Diary, you have organized my brain- fogged life. All my finances, Christmas lists, monthly

plans, appointments and notes-all in one book. Also free stickers to remind me of birthdays, holidays,

appointments etc. Also space for Hubby's schedule and appointments too! There is space for 4 

people's schedule- the whole family.

5) Burt Bees lip balm-

natural product that doesn’t cost a fortune and

really works.

6) Overglasses

Sunglasses for specs wearers... for a pittance.

If you are light intolerant, then the rest of the family don’t need to stumble

around in a dark house when you are wearing these sunnies.

7) Avene Sunblock Factor 50

It makes you look a tad pale, but, as a person with super sensitive

eczema prone skin (that reacts violently to sunlight)- it works!

8)Trolley Table

Now my books, diary, and PC have somewhere to reside, and I can eat

in bed without becoming a hunchback, or tipping peas into my lap.

7) Unisex Portable pee Bottle

Problems dragging your pain to the bathroom in time?

Unable to cop- a -squat without falling to the floor? No problem! Folds

up as small as a drinks can (when empty). Also great for camping.

8) Cross body bag

No more bag- sliding- off- the- shoulder- and- into-the-gutter moments for me!

9) Fold-able stick

10) MP3/ipod- 

probably most of you have more up to date technology

than me, but this is brilliant for having hours of audio books, radio and

music, without having to switch on the PC. And podcasts ….and guided meditations.

11) Alcohol Free Rescue Remedy

I've had quite a problem sourcing this. Most Bach Flower remedies are

mixed in Brandy ( which I can't tolerate), or grape juice ( ditto). This

company make them using Agave Syrup as a base.Be it a panic attack or a meeting with the benefits 

agency, this has proved to be a fantastic way to keep calm.

12) Medical alert wristband

with up-dateable info so if I do keel over from POTS

all my info on medication, my conditions and next of kin contacts are here ( and I don't need to get a 

new bracelet engraved when my prescription changes). Waterproof and fully adjustable.

13) Wedge pillow

Brilliant for using to sit up in bed or for wedging under my knees when I

am lying down ( taking the pressure off the lower back).

14) Electronic Heat Pad.

One of these was given to me by our neighbours when I appeared at their door

with a ‘leaky-hottie-emergency.’ Steady heat in a flexible pad that

soothes pain...without the need to boil the kettle.

15) Pillow Raiser= GENIUS!

This is similar to the one I have, but mine is on permanent loan from the

Occupational Therapy service ( they are insanely expensive).You can buy the manual version much

If you are disabled and think this type of service might

benefit you, you should ask your GP for a referral to the OT service

And last, but definitely not least......

16) Laughter.


Sunday, 30 April 2017

Friends without Benefits

I have been debating on and off, whether to include this in my blog about ‘living the dream’ as I adapt to disability and illness. I have commented/documented/moaned about many aspects of life at the elephant house these days. I have described my battles with trouser waist- bands, wondered if I were living in a foreign country, and asked why spoons should mark my limitations. I have battled skirting boards and doors in an effort to get used to my walker, and shown you how pain can sometimes inspire some very raw artworks….

But there is one subject that has absorbed almost all my energy in the last 8 months, and that is my ongoing battle to receive PIP. This is the benefit that is there to provide financial help for those unable to do simple household tasks, cooking, washing, dressing, and who have limited mobility. Essentially it is the benefit that acknowledges that you are disabled...and more importantly helps people pay for the things that help them to live independently ( which I would really struggle to do without spousal help and his love of me and his kindly tolerance of all things MEish and POTsie ;-) )

It turns out that in addition to having miniscule amounts of research funding, and a militia from the field of Psychiatry who are determined to prove that ME patients are mentally ill and have invented an illness that doesn’t exist…..we are also discriminated against by the Social Security System. This does not just apply to me, many in our online community are up against the same wall of indifference and cruelty...

I am lucky as I have support, not only from Mr H, but as an unexpected ‘benefit’ of this process I have connected with so many others who are being put through the same wringer and have received so much good and useful advice, together with cheer-leading words (‘ I will be shaking my pom poms for you’ stays with me!) Like pots forming out of muddy clay, new online friendships have started to take shape.

We also have a wonderful CAB benefits worker, who we did not involve until late on. But the point is this- you should not need psychological support or professional help to apply for a benefit, that according to the DWP’s own definitions, you are entitled to (which I am).

The form I had to fill in was very complex to the point that even with someone else reading the questions and writing the answers,as I lay on the sofa with my eyes closed, it made me sicker. I am lucky enough to have a GP who not only understands my situation, but is happy to commit what my limitations and difficulties I have, to paper. Other friends of mine are not so lucky. I was also fortunate enough to spend 2 weeks at a hospital specializing in ME last year. I have a wonderful Occupational Therapist. So... with much paper work from professionals, and right on my side, I felt quietly confident.

Yes….you can guess the rest. I am now awaiting my appeal against an award of ZERO, nada, nil award. Apparently I am able bodied! I could hardly wait to give my body the good news, that it could just get off my backside and start acting normally!

The case will be heard in a Magistrates Court. I feel as if I have committed a crime and are being held to account...and my punishment could well be that after 11 months of stress ( the date of my appeal is likely to be another 3 months away), I will receive nothing. The case seems to rest on the fact that they don’t believe: me, my GP, my OT, my ME specialist and my local MP ( who is supporting me). I am not exactly confident.

No one has been able to tell me why anyone would put themselves forward for this hell if they did not genuinely qualify. If you are thinking that it would be possible to fake any of this to get free money- I can tell you that it is not. I have had jobs, I have earned money, and trust me, being ill is the hardest work I have ever done...and absolutely the least lucrative.

My emotions have gone down and down throughout the waiting. I feel very humiliated by the process of having to sit on the road of life and just beg. Not only have I not been given any coins, I feel as if my cap has been stolen and my faithful dog kicked.

Initially I was slightly in denial that I needed as much help as I do,….but after trawling through my humiliating limitations in the sort of detail that my best friends don’t know about me,(the bra I can’t wear, how long it takes me to recover from a shower, the walking I can’t do). I now felt proud to call myself ‘Disabled’ I had no idea what they -we – have to go through, to survive.

I pushed myself very hard to write the mandatory reconsideration letter, which I believe has contributed to the last 3.5 months of flare up.
This period of time, when pain and limitation have been the worse they have been for over 20 years, has made me feel even more determined to get what I deserve and need. The irony of being told that I am not disabled -at a time when I was struggling to accept that I AM disabled- has not escaped me. If I can share my experiences of the form, the ‘medical’ , the mandatory reconsideration, the appeal process...and demystify at least some of these processes, then I will at least feel there is a point to all this.

The benefits system feels like an incredibly personal kick in the goolies, when in fact, the one thing the system does well, is to NOT treat you like an individual. The goal is to save money and people like me are collateral damage.

Becoming disabled is not a lifestyle choice- it isn’t on anyone’s bucket list. I am happy to have the support of friends also tangling with the benefits system, but I wish with all my heart that they didn’t have to suffer alongside me.

Wednesday, 29 March 2017

Gallery of my Disability/pain related artwork

The Spoons Don’t Work….

Over the last 18 months, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in constant pain that is apparently not going to get better, and has no specific cause.

Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the uninhabitable world of wellness, and finding a safe haven with those who are generous with the little energy they have.

Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.

I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find this termanology frustratingly unhelpful. In brief; the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until I am spread like jam on the nearest mattress-‘spoonless’.

This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!

There is also the Energy Envelope ( the amount of energy I have most days would fit easily into an envelope), Energy Account ( at the bank of un-co-operative. where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on 'losing my marbles' which becomes more likely with every day that passes..

Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes.

We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.

It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.

It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle, OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!

ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying; ‘ ME goes on regardless, whilst you are busy making plans’