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Just a quick and fun blog post (to distract me from other posts i could write which are less fun, say about ITCHING!Arghhh!).

I discovered the other week that if you type “ME symptoms” into Google Images, my Symptoms Picture from ME Awareness Day last year is the top hit! I just did it again and it is still in the prime location. Also the two other images i created for the occasion are on the first page of results. I wonder how long they have held that position?

This really cheered me up when I saw it. I know it is silly on the one hand, but on the other hand it does suggest that many people are seeing them. Some of them may not have ME/CFS and may be learning more about it, which was the point of putting so much work into the images in the first place. It was hard work and it is nice to see it has possibly  been worth it.

I have been wondering what to do next year as I was concerned that recent efforts were not having much effect. Maybe they are having more effect than i thought! It is the International Top Hit!!

Also, don’t companies pay lots of money/make lots of effort to get the top slot on Google and other search engines? Granted the other images there are a bit rubbish so my competition was weak, but ha ha anyway.

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ME/CFS Awareness
Well, It is International ME Awareness Day 2009 on May 12th,

AND also the first anniversary of my blog!

It has been quite a year for me, health-wise, but you can read about that in previous posts…

ME/CFS Awareness

Many people are making it into ME Awareness Week and even ME Awareness MONTH, so i thought, why not do a few blog posts throughout the month on various aspects of this illness, to do my bit to spread some very important information and awareness about ME.

ME/CFS Awareness

I know, i know, there are hundreds of illness out there and no-one can know all about them all, so what is the point? Well, if you read the blue ribbon badges running through this post, you may get a few reasons. ME has been getting a raw deal: it is misrepresented by the media, and (deliberately in some cases it seems) misunderstood by the medical profession, and given next to no funding by the government into its cause or into treatments – despite the large number of people it affects and how severely. We are offered nothing except coping and “management” techniques – most of them really make little difference to our experience at all.

Just by reading this and understanding that it is not “all in the head” and not just about “liking to lie in bed all day” and that so much more could be done and needs to be done to give people with ME (pwME) an equivalent level of care and credibility to other equivalently serious diseases; you are helping to change general opinion about ME.

The more people that know what it is like, and can challenge people who laugh about pwME in the pub (they do – i have heard them) and who call it “Yuppie Flu” (as if we would get up and work if we needed money badly enough); the less the powers that be will be able to plead ignorance and ignore the facts – we need to turn the tide… AND, next time you meet someone with ME, or someone you know becomes ill with it, you will know enough to make them feel less isolated and that there is no support or understanding out there for them.

ME/CFS Awareness

I will post links to my individual posts here so they are kind of organised ( i will update this as i add new posts)…

  1. The first one is my exploration of all my Symptoms, to try to show that ME is not just about feeling tired, there is a LOT more to it than that.
  2. I then did a second post to follow this up, about the Impact of those symptoms. on my ability to function/live life, and also the Things that people say to me about my illness
  3. Then there is: You look well!
  4. (maybe more to come!)

If you want to read what other pwME are writing about, and to find lots of information about ME, go to http://meaware.wordpress.com where RachelCreative has been working hard, creating these badges and the site as a hub for all of us who are “Blogging for ME Awareness!”

We have all put in a lot of effort and appreciate you coming to take a look 🙂

 

ME/CFS AwarenessME/CFS AwarenessME/CFS Awareness

So, feel free to have a read, and if you have learnt anything, or were surprised by anything i have written, let me know! I am really interested to know what people who do not have ME know about it, what messages about it they have picked up along the way, and if i, or any other blogger for ME Awareness has changed/challenged any of that, or if you already had a pretty good idea already…

Also see this great & imaginative campaign to raise One Million Pounds for ME research this year: http://justfourquid.com/ Let’s do it!


(This is one of several posts i have written for ME Awareness Day – click here to see my main page and link to the other things i have written, and click here to see what everyone else is blogging about!)

I have been mulling over what to write about for ME Awareness Day 2009 for the last few weeks… there are so many issues that i could talk about, personal, political, medical – but in the end i thought i would keep it simple (that was before i started to actually list my symptoms!) and share with people all the symptoms i have experienced in the last few years (I have been ill for over ten years but will focus on the last three years since i left my part-time job when things got worse again. Apart from the initial period of illness, the past three years have been the most consistently severe).

I want to convey the very important message that Chronic Fatigue Syndrome (my official diagnosis) IS NOT JUST FATIGUE!!

(I should mention here that i also have another (additional) diagnosis of “POTS” (Postural Orthostatic Tachycardia Syndrome) which is a collection of symptoms relating to my Autonomic Nervous System not working properly. Apart from the tachycardia and nearly passing out, I cannot really separate the two illnesses or sets of symptoms as they are interrelated and i have no idea which causes what much of the time, never mind if they are actually part of the same condition/illness. Quite a lot of people with CFS/ME also have POTS and most others will have symptoms of autonomic dysfunction to some extent; particularly those who are moderately to severely affected. These can include: Dizziness and lightheadedness, digestive problems, problems with standing and being upright (feeling much better lying down), lack of temperature control, circulation problems and blood pooling in lower limbs, and many more). 

I do not like the name Chronic Fatigue Syndrome (CFS); i think it does minimise the complexity of the illness and lead to many people claiming to have it, or being diagnosed with CFS, who actually do not have it. People can be tired out and run down for many reasons and this can drag on and affect their lives very negatively, and i have every sympathy for them, but it does not mean they have the same illness that i have. Maybe we can all get appropriate treatment once this is sorted out. I won’t get into all the ins and outs of this issue here (the variety of diagnostic criteria used to diagnose and the implications this has on credible research into the condition/or conditions) but i feel it is really worth emphasising the full range of symptoms and bodily systems affected by CFS/ME, many of which perhaps do not get mentioned.

It particularly frustrates me when doctors and other medical professionals (who should know better) say to me, when i am feeling particularly bad at an appointment, and have lost the ability to speak clearly and express myself:

“Yes, I know, you are feeling very tired today”

I suppose they are attempting empathy and trying to make me feel understood, but i just scream inside that they know nothing if they still think of CFS/ME in this way. I do NOT feel tired: i feel physically and severely ILL. I feel that essential bodily functions/systems are shutting down one by one and it is truly frightening to experience my body in this state of crisis.

I often feel i am moaning on too long for people to tolerate if i talk about my symptoms in detail, in fact i often do not focus in on them myself unless they are severe as it is just easier to get through the day by distracting myself from them/ignoring them as much as possible… but here they are in all their glory…

me-symptoms-picture
 
(List of symptoms included at end of post in case you cannot read the image)(To see the image larger, click on it, which will link to Flickr)

 This is just a personal picture,of course, and other people will have a different set of symptoms and will experience my more minor symptoms as major and vice versa. I have found that the symptoms seem to evolve and change over time, some improve, but often others move in and take their place, so it feels that quality of life does not change much overall.

The implications of these symptoms obviously affect every single minute of my life, and everything i (attempt to) do. Everything i do manage to do comes at a high “price” in terms of having chosen it over other things (this often means choosing between things that others would deem as all “essential” tasks to do in a day) as well as in terms of what is officially called “post exertional malaise” or otherwise known as “payback” (if i do something that uses too much energy/exertion i will then have a period of hours/days/weeks where i am operating at a much lower level of functioning and experience many more symptoms, and more severely, than usual) so every little thing needs to be considered as to it’s importance in relation to how strong i am feeling at the time, a wearying decision-making process in itself, and always a gamble…

I have made two more pictures like this, about other aspects of ME: the impact of these symptoms on my ability to function, and the things that people (mostly medical professionals) have said to me about my illness. Click here to read that post too!

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

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Symptoms: Vertigo, noise sensitivity, tightness of scalp, sensitivity to light, lack of stamina, nosebleeds, dizziness when standing, sitting, moving, speaking or concentrating, tinnitus, TMJ (Jaw joint) dysfunction, breathlessness, light-headedness, eye muscles slow to react to light/focus, tension headaches, clicking of back, neck and other joints, facial paralysis, dry eyes, constant thirst, aching eyes, blurred vision, mental fatigue, tri-geminal neuralgia, neck, shoulder and upper back pain and tension, painful points on scalp and upper back, hormonal issues, reactive depression, swollen and painful lymph nodes, shivering/goose bumps/spasms when not cold, sensitivity to movement in visual field, tachycardia (POTS), memory and concentration problems, difficulty speaking, pallor, weak bladder, almost fainting, pins and needles/severe itching of legs, shaking, muscular weakness and fatigue, ticks/twitches in muscles, lacking in energy, paralysis on waling, defecation syncopy, IBS, freezing cold feet when body hot, lack of stress tolerance, movements slowed, need to be horizontal and have bed-rest in day, weight gain/loss, post-exertional malaise/payback, disturbed/prolonged sleep, generalised weakness, lack of body temperature regulation, excessive sweating, hot flushes, trembling leg muscles, walking difficulties, sensitive skin – easily irritated and painful to touch, heavy aching thighs.

(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…

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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

(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!)

I was reading this great blog (as part of Blogging Against Disablism Day (BADD) click link to read more!) and saw an excellent paragraph in it, which was actually taken from here:

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

This really made me smile and pins down something i have been bothered about in the back of my mind for some time: Why does it annoy me so much when people say “You are looking well”, or “You sound good” or whatever. I always feel a bit guilty about feeling so prickled by it, when they simply want me to be feeling well and to be improving with all their hearts and are just expressing it… but it feels like it is just a conversation to make them feel better about it; to let them off the hook; to avoid facing the truths about my illness. When i try to explain that they have simply caught me at a good moment and that in general nothing has changed, i get this look, as if to say “Why are you denying improvement? Don’t you want to get well? Be grateful for what good times you have!”

(I must say i am more tolerant of this when it comes from people very close to me who do know largely what my life is like or who see/speak to me regularly, as maybe i do sound a bit better than the last time, but i am safe in the knowledge that they know this does not mean anything more than that, that right now i can speak, but afterwards i will be exhausted and i may not be able to…)

I may look well because i have spent all the day up to this point (and probably yesterday too) making an effort to be clean, have had my hair washed, to have sloughed all the unsightly dry flaky skin off my face and moisturised, to have got out my nice clothes, rested effectively and eaten sensibly and taken a sleeping tablet, a painkiller and all the other things that i need in order to ensure i can function for this occasion of seeing you. I may even feel quite good after all this planning and preparation and be enjoying myself in this rare foray into your world, but like Cinderella, the mirage will soon fade, and i will feel so ill and have so many extra symptoms over the next few days in “payback” that i really cannot just forget this and enjoy “looking so well”. It is not your fault, of course, but how i look at the moment is irrelevant to the bigger picture. “Looking well” can sometimes feel like a curse and a barrier to understanding.

The other common exclamation is “Isn’t it lovely weather, that must really help you!” It helps me in the same way it helps anyone else, and yes, it is nice now that spring has come that i can sit in the back yard and get some fresh air and sunshine (occasionally) and have a change of the usual four walls to some al fresco four walls with birdsong and the like, but it is said to me as if it will actually make me well… My illness is not caused by depression, i actually don’t think it is perpetuated by depression (it just makes it harder to live with). To suggest that all i need is some sunshine for my severe and chronic health condition to improve is really irritating, and again i feel so guilty for being grumpy about it and usually just say, “oh yes it is nice to have nice weather” (and think “but i feel as ill as ever)”.

So now you are reading this and thinking “well i didn’t mean anything by it, what the hell am i supposed to say then? Nothing?” No of course not, but please, just ASK how i am. If you must, you can ask if the sunshine helps me(but don’t expect a sunny answer to that one – my patience is wearing thinner and thinner on this issue).

When you do ask me how i am, of course, that opens up a whole new set of issues: Do you really what to know how i am? Do you want details? Do you want to understand what my life is actually like? Or do you want a “Fine thanks” or a “Not bad today” with no details? It is hard for me to know. Even if i know you really do care and want to engage with it, how can i explain how i am? How can i quantify my wellness or illness in a way you can understand? Sometimes i can say i am “better” but do you know what that means? Do you think i am on the way to getting properly better? Or do you know i mean a-tiny-bit-that-only-a-chronically-ill-person-would-notice-as-an-improvement-and-it-could-all-change-in-the-next-five-minutes-better?

I find when asked “how are you?” these days, i just say “i am ok right now thanks” or something along those lines, because, of course i have been better, and i have inevitably been a lot worse (well i am having a conversation, so evidently not SO bad) so everything else is just in between these two… how i am changes minute by minute, hour by hour and day by day but also not a lot really changes.

So i appreciate you asking, and that you do care, but know that these questions are so loaded for me, and there is a lot more going on behind my reply…

ME/CFS Awareness

ME/CFS Awareness

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