(This is one of my “Blogging for ME Awareness Day” posts – see the rest of my posts for this event here, and what others are writing/doing here!)

Here are some additional pictures, following on from my previous post and the image of my Symptoms.

One is showing the impact of my symptoms (see the connected post first) on my life and ability to function, and the other is  some of the things that people say to me about my illness.

Impact:

impact-picture(click on the image to link to Flickr, where you can view “all sizes” and see the image much larger, to make it easier to read. The text in the image is reproduced at the end of this post for those using a screen reader).

There is much more i could have included in this image, had i the space, and the impact of the “things people say” image (below) would be another picture in itself!

Things People Say:

 things-they-say-to-me-picture

 (click on the image to link to Flickr, where you can view “all sizes” and see the image much larger, to make it easier to read. The text in the image is reproduced at the end of this post for those using a screen reader).

The bold quotes are what medical professionals have said to me, the unbolded are the general public. Of course these are just a selection, some i have heard many times. I have focussed on medical ones as it hurts the most coming from them…

*******

The effect of all of this is, of course; social isolation, depression, frustration, difficulty maintaining relationships with friends and family and meeting new people, difficulty pursuing interests, difficulty being a member of any community (except the online ME community – thank goodness for internet) and much more… 

…and we are largely left to get on with it, or to fight: for credibility, benefits, medical attention or other support, and for research into treatments and causes which is only just beginning, and not government backed.

I feel there could be many more pictures to make in this vein, but perhaps these three give some idea and increased awareness of the lot of people with ME…

One other idea was to label the body with the findings of abnormalities from medical research to date, to show how much has been discovered already about the physical basis of this condition, but it has taken me weeks to do what i have done already for this year’s ME Awareness Day and the thought of searching through medical info and jargon was a bit overwhelming! Maybe another time…

Please do not use my image/artwork without asking!
Creative Commons License
This work is licenced under a Creative Commons Licence.

******

text from pictures is below:

 Impact:
Travelling anywhere very challenging due to sensory overload of visual stimuli (light/movement), noise, speaking to people, strong smells; plus the effort of getting ready, stress of remembering what I need, pain from bad seating, having to walk/stand on demand, and more, mean the I often feel terrible after only short journeys, meaning I am not well enough to do whatever I went out for and need to get home to bed asap to recover. If this is not possible I can become very ill and be barely able to speak of walk.
Being in bright, noisy, hot, busy environments like restaurants, cinemas, shops or other social settings is very draining.
Sitting on any chair/sofa that is not fully supportive of spine and head soon causes pain and takes more effort/energy to hold myself up. It is hard to know in advance if there will be anywhere suitable to sit when I go out. If there isn’t, I have to leave much sooner.
Payback after anything more than a small amount of activity (how small is variable, as are recovery times)
Moving around the house, climbing stairs, rising from chair can be hard.
Walking any distance challenging/very draining or simply impossible.
Need for regular bedrest during the day, often after only an hour since getting up the last time.
Cognitive problems cause difficulty with memory, understanding what people are saying to me, being able to respond quickly enough, reading and taking in information, and concentrating on these things makes reading, having a conversation (phone or in person) organising myself and so on, very exhausting. A five minute conversation can put me in bed for an hour or more.
Standing very difficult: to cook, clean teeth, dress, shower, walk, queue, do housework, talk at the front door, stand to chat, and much more are affected.
Muscular weakness makes reading, being on the computer or doing creative things hard because my eyes get tired, painful and blurred quickly; as well as obvious things like walking, carrying even a light bag for a short time, housework… repetitive things like chopping things, stirring, rubbing (eg to wash hair) are particularly hard as muscles can seem ok initially then lose power fast.

Things they say to me:

(The medical professionals)

I have met lots of people like you, I can fill out these medical questions for you…

 I feel you have helped me more than I have helped you

You don’t look ill

You just want to be cared for – you can’t face adult life and responsibility

Do you do pacing? So how do you know your limits if you never reach them?

You will never get well if you are depressed

What are your hopes and goals for 2008?

Your illness is certainly mostly psychological

If you look hard enough into yourself you will find the reason you continue to feel ill

It could be the position of your bed… in relation to ley lines

Everyone has baggage and issues – what we need to work out is why people with ME don’t deal with them in the normal way and become ill

You are depressed. You don’t feel depressed but it is manifesting itself physically

Just try turning the tap on a little bit at a time rather than having one big cry

Who do you blame for your parents’ divorce?

 

(Other people):

 

We all get tired

Your life sounds like everyone’s ideal life

There are much worse jobs than this, you don’t know how good you had it here

You should go to Pakistan and see a witch doctor, my uncle couldn’t walk at all, NHS couldn’t help him: now he is fine!

You’re too ill to work? (chuckles) what’s that like?

Do you believe in God? You should…

I was off work once when I hurt my back, but after a few weeks I had to go back: I had no choice

Advertisements