RSS

Tag Archives: personal

People with ME/CFS don’t have a sense of humour

Today I saw yet another media article about ME/CFS and whether the condition was real.  There is nothing unusual about this, each week another handful of these are written.  The thing that made me write today’s post however, was a comment response to the article that said that people with ME/CFS don’t have a sense of humour.

He is entirely correct.  Where our health is concerned, ME/CFS sufferers do not have a sense of humour.  There is a very good reason for this.  Every week since my diagnosis I have watched new articles released in newspapers, magazines, blogs or on television all looking at ME sufferers and how convenient it is that none of their illness can be proved.  Occasionally a positive article will slip through the net describing realistically what it is like to struggle through each day with such a debilitating illness, or that gives a positive reinforcement to the neurological/physical aspect of the illness.  These positive articles are extremely rare, however, and the media as a whole seems to continually spawn articles that confirm in the eyes of the general public that people with ME/CFS are lazy, lying hypochondriacs or are in some way mentally impaired and requiring psychiatric treatment.

For a physical, neurological illness.

There does appear to be a distinct lack of articles telling the sufferers of other severe debilitating physical illnesses (like cancer for example) that they can be cured with a little psychiatric treatment, or advice articles telling people with AIDS that its all in their head and a little bit of exercise and self-esteem would make it all better.

Of course there aren’t articles telling the world that sufferers of Multiple Sclerosis just need a bit more fresh air and exercise and to stop being lazy.  That would be considered rude, politically incorrect and insensitive.  Yet ME/CFS sufferers have no such considerations as many of these articles or documentaries are backed by medical professionals.  If only we could cure all the cancer victims in the world by telling them they aren’t really sick.  We can’t.  Just as we can’t cure the ME/CFS sufferers by doing the same.  It is socially acceptable to continually belittle and demean the sufferers of this misunderstood illness which has already taken much of their life away.  How dare they not see the funny side?

I don’t have a sense of humour about ME/CFS, just as I wouldn’t find jokes about AIDS funny, especially if I were HIV+. Surely that is a natural reaction?

 

 
1 Comment

Posted by on April 5, 2012 in Myalgic Encephalomyelitis

 

Tags: , , ,

How do you cope with being ill?

Today’s post is inspired by a friend that asked me a random question today.

How do you manage to have a life when you tell me that you are so ill?

For me there is a simple and short answer: because my day is prioritised around anything important.

The short answer though is really only understandable if you can see how a regular day is for me.  The long answer would involve all the hundreds of things each day that are done without even thinking anymore to make this happen.  I’ll try to show you what I mean.

I live in a small flat just outside London, UK.  The town I live in is quite small, stuck between two large towns.  The street our building is located on, is closer to the main high street, but tucked aside with its own private community garden and high walls that seem to prevent the rest of the world from intruding.  It’s rather quiet.  There is very little noise from traffic.  My neighbours are mostly elderly or rather private people and as such rather considerate in noise levels.  Why am I explaining this? One of the things that tires me out quicker than anything else is strong sensory input.  Loud noises, bright lights, strong smells and so on.  Our home is ideally situated to help reduce their effect on me.

The majority of my day is spent in our living room.  It is fairly small, so if I need to move about there are many pieces of furniture to rest against or grab hold of.  There is no noise to disturb me; no television in the background or music playing, no children playing. Even Mr Wench is asleep in our bedroom for the majority of the daytime as he works the night shift.  The curtains remain permanently drawn closed unless a specific reason requires me to open them.  The entire flat is a small cocoon of quiet and darkness.

I know this is not so for other families and that in most homes I could not do this.  However, most days I get to enjoy my comfortable, quiet shell that protects me from wasting energy.  At the weekends I am much more exhausted and that’s purely by the introduction of Mr Wench watching television in the background or needing lights on to be able to see things he is working on.  Visitors to our home require more light and inevitably bring more noise, so these have to be rationed into acceptable times. This is not normal behaviour obviously, but it has had to become normal for us.

Then we move to daily routine.  I have a collection of loose-fitting tops and jogging bottoms, along with some pyjamas that are all easy to pull on and off as well as comfortable to wear.  These are essential. They stop me wasting valuable energy choosing items to wear and fiddling with buttons, ties and zips.  Things like brushing my hair or teeth are done whilst sat on the closed seat of the toilet which enables me to rest the active arm on the cistern to take the weight off my arm muscles.  A bottle of water sits on my computer desk so that I do not have to get up just to get a drink.  A high stool stands in our kitchen so that I can sit whilst trying to wash up or prepare food…the list is endless.

To most people, meeting a friend for a quiet lunch is a simple thing.  For me, its something that requires several weeks of planning and much rest afterward, often more than one day’s rest.  Consider the activities and atmosphere I mentioned above.  Now consider how many of those things need be altered for lunch with a friend.  It is not just the energy required to get to the location, eat and chat with my friend and then return home.  The clothing has to be changed into more difficult things to wear in order to be presentable in public…perhaps even make-up may be involved.  There will be traffic noise and noise from the crowd around you, smells of food and exhausts, sunlight and lighting inside the lunch venue.

This weekend I travelled to a reunion to see friends I had not seen in about twenty years.  I could only stay for a few hours before I was struggling to hold my head upright, but it was worth every second.  Just being able to talk with people who have meant so much to me over the years and that I’d lost contact with was so important.  Despite taking the wheelchair and trying to make sure I did nothing else that day, I still was in pain and exhausted when I reached home again.  In fact, it took me a couple of days of little more than resting to be up to writing this.

So, why did I put myself through it?

It’s important to still feel that you have some semblance of a life, no matter how cut off you may feel from the rest of the world.  Those few hours sharing memories with people who I have loved for decades showed me that even if 20 years go by without seeing someone, it’s still possible to just carry on as if you had seen them the day before.  Thank you, girls. That was something truly special to me.

 
Leave a comment

Posted by on October 11, 2011 in Myalgic Encephalomyelitis

 

Tags: , ,

I cried like a baby

Its been a hell of a week!

Firstly, my computer decided that it was going to give up the ghost and spectacularly fried the hard drive.  My computer is my lifeline to the rest of the world as I can’t just get up and go see people, so it left me feeling a little isolated.

To add to all this though, I woke up yesterday and my finger was itching and red and very uncomfortable.  After the best part of an hour, I managed to finally remove my engagement ring in case it got any worse.  I most definitely did not want to have to have my engagement ring cut in order to remove it from my finger.  After another hour or so the swelling had subsided to enough of a degree that the cause was apparent: I had gained enough weight that my ring would no longer fit my finger.

I was devastated.

Suffering from CFS (ME) is very frustrating for me because you can’t just work harder at getting better.  Lack of exercise is gradually de-conditioning my muscles and I am gaining weight.  I can’t actively exercise as this uses even more energy that I just don’t have.  I have a series of exercises given to me by an Occupational Therapist from the CFS group at my local hospital, but these are just tools to try to prevent my muscles from wasting away really.  Much more than that is currently out of my reach.

I had spent many of my sessions with my doctor discussing the weight gain that I had little control over and she had reminded me that I’d lost it all once before and that when I have recovered from the CFS (ME) I can lose it all again, and that there wasn’t really any point in worrying about the things I can’t really change currently.  But now my ring doesn’t fit.

Mr Wench came home from work to find me bawling my eyes out.  I’m not talking little lady-like tears here, I’m talking full on, nose the colour of a beetroot, uncontrollable hysterics.  I know that not being able to wear that ring makes no difference to how much Mr Wench loves me, or how much I love him.  We have put our wedding on hold for so long in order for me to be well enough to participate that not being able to wear my ring was just one more in a long list of frustrations.

But it was my ring.  Its beautiful.

And every time I glanced down at my hand and saw that little flash of light reflected from my ring it made me smile.

Now it is tied around my wrist with a piece of string but it isn’t the same.

I know its silly to get so upset over such a trivial thing in the grand scheme of things, but it was one of the few things I could count on to lift my mood on a bad day, and now our wedding just looks further and further away.

 
Leave a comment

Posted by on March 10, 2010 in Random

 

Tags: ,