Kay Gilderdale was accused of murdering her severely disabled daughter. Lynn, who had lived ME most of her life, was bedridden and in constant pain. With the trial now over and Kay cleared of blame I have found myself asking how much people really understand what living with ME is really like? So last night I had to get up and write down my thoughts on living with ME. I want you to know that I do not consider myself to have Severe ME, in fact I would say it was moderate. These issues apply to most ME sufferers at some point during their fight with this debilitating illness.
So I would like to ask you a couple of questions.
Do you have a friend or family member with ME? Do you understand how ME affects them every day? Do you know that there are some things that they may be reluctant to admit for fear you might think less of them?
Things like a 15 minute shower is so exhausting that they may not manage it more than once or twice a week?
Did you know....
That food shopping or meeting a friend for coffee has such after effects that those might be the only times they leave the house that week?
That housework has to take a back seat as to do it would make them too ill to manage the rest of the things that need doing like making a meal, also something that is a big job and very tiring?
That hobbies have to be put aside and reading can become impossible?
That owning and walking a dog becomes a burden despite the fact that their very presence brings joy to your life?
That they can be utterly exhausted but unable to sleep?
That every activity or invitation to even the most special and important events have to be assessed based on how ill they will be afterwards and how many have to be turned down because they are not well enough to make it, often at the last minute?
That plans for the future are practically impossible and yet without them life is barely worth living?
That even writing this has made my wrists and hands hurt?
Did you know all this or has this been news to you? Has it helped your view of your family member, friend or colleague with a new understanding of what they are fighting? Maybe you now have a greater admiration of them and how much they still manage to achieve? I have several friends with ME and one who has it severely and is wheelchair bound but I have to say I have great admiration for all of them and how they are able to continue fighting this disease with a smile on their face and a positive attitude!
I hope you not only read this but you will pass this onto your friends so they too will understand a little more about ME. This is a condition that is poorly understood in the medical profession and less understood by the public who question if it is even real! Help me to change their minds. Please pass this on!
Thank you for taking the time to read this