Living with ME – how one Worthing woman copes
FOR Jennifer Thomson, some days even the smallest tasks can present a massive challenge.
Things many of us take for granted, such as unloading the dishwasher or hanging up washing, could sap all of Jennifer's energy.
She suffers from ME, also know as chronic fatigue syndrome, an illness which causes sufferers extreme physical and mental exhaustion.
But while every day is not always so difficult, Jennifer has had to spend time adapting to her life now she has been diagnosed with the condition.
She said: "I use pacing, so if I know I have a big family event or important meeting, I allow time either side of it to rest.
"Planning is very important, because I know if I have a very busy few days, I will end up paying for it and having to stay in bed all day.
"Learning to say 'no' is hard, but is something we all have to do at times to avoid a relapse or worsening of symptoms."
Jennifer, of Warwick Road, Worthing, first realised she had ME in 2003.
She had been to her doctor several times as she had repeated bouts of infection, problems with memory and organising her thoughts and extreme physical and mental tiredness.
Her doctor eventually suggested she might have the illness, but it took until March this year to get an official diagnosis from an ME specialist.
There is no known cure, but she is now on the waiting list for cognitive
behavioural therapy – a way of changing what you think and what you do to make you feel better.
The condition forced 37-year-old Jennifer to leave her job as a secondary school teacher, as she could no longer cope.
She also had to move out of her home into a smaller flat, as she was finding the upkeep of a larger place too much.
She said: "It's very frustrating to know I couldn't keep up with the lifestyle I had. It was not a good time in my life – I had gone from being active and having a reasonably responsible job to not having them any more.
"Coming to terms with ME takes time. You have to allow yourself time to adapt mentally and physically to the changes it will mean."
At her worst, Jennifer has found herself unable to leave her flat for up to three weeks and was reliant on friends. She said that was because the condition was never static, so she could experience "relapses" from time to time.
She said being housebound had made her feel isolated at times,
but she had found support from the Sussex ME Society, which had been able to give her advice.
Jennifer said one of the issues with ME was that sufferers looked well on the outside, so people did not always understand exactly what it was.
She said: "Some people have not heard of it and I have to try to
explain what the condition entails for me, which isn't always easy if I'm having a bad day and can't find the right words.
"I think we are all worried at times of people thinking we are moaners or malingerers, but I cannot believe anyone would willingly have this condition as it can curtail your life immensely.
"I've had reactions that have varied from disbelief in the condition,
indifference, through to absolute sympathy for what ME sufferers have to live with."
Jennifer hopes by speaking out about the misunderstood illness that it will raise awareness and increase people's understanding of what it is like to live with ME.
In the future, she would like to see greater funding put into researching the condition, and hopes one day there will be a cure.
This week is ME awareness week. For more information about the condition, visit www.measussex.org.uk">www.measussex.org.uk or call 01273 674828.
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Sunday 27 May 2012
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