How do you cope with being ill?

11 Oct

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.

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Posted by on October 11, 2011 in Myalgic Encephalomyelitis


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