Sarah Elsby

Stepping up for M.E. ... one day at a time

Fundraising for ME Association
raised of £950 target
by 63 supporters
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ME Association

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RCN 801279
We help people with ME/CFS to understand and survive their illness


A mum is that special person in our life that we hold dear to our hearts; the person we look to for guidance and support and who we would do anything for. I was in college when mine was given a new lease of life - she met my stepdad and together they enjoyed being active; playing badminton and going for walks in the great outdoors. Her favourite walk was at Ingleton, a walk past the waterfalls. This is where they went on their honeymoon. 

Only a few years after gaining this new life, she had a son, my wonderful brother Lewis. He was only just at Junior School when my mum became ill. Having been so active, she suddenly had no energy at all. His school was only a 5 minute walk away from home but, having delivered him safely there in a morning, she would spend the rest of the day distraught and panicked, wondering how she would physically be able to summon up enough energy to make the return trip to collect him in the afternoon. That short morning walk literally left her zapped of all energy, in pain and physically incapable of moving. She didnt understand what was happening to her body.

There were times when she was physically unable to leave her bed for months at a time. My stepdad had to help her to the bathroom and to shower. Simply mustering the energy to take a shower would leave her completely drained of energy. She would get straight back into bed with wet hair after showering, having neither the energy to dry it nor stay upright a moment longer. She now has it cut shorter for that very reason and either leaves it to dry by itself or has to sit on a chair drying it in the kitchen, with the door wide open to counteract the hot sweats she gets simply from doing something the rest of us take forgranted. It takes forethought and planning for my mum. In fact there are often times that she will make plans to see someone but have to cancel because taking a shower beforehand has completely wiped her out.

There are many other symptoms she has that are often faced by people with M.E. She has severe joint pain, for which steroids can help but they have the side effect of weight gain - clearly detrimental for a person who already struggles with their energy levels and also not good for people who can get depressed; another symptom that my mum faces as a result of her M.E. She is also prone to many infections, particularly chest infections; M.E. causes the body to be in a constant state of alert, effectively tricking the body every single day into thinking it is about to face an infection - it doesnt shut off the signals needed to respond to this, hence using up lots of energy constantly trying to fight something that hasnt even happened yet. When the chest infections do happen, however, they will take a long time to clear and their symptoms will be worse than if I, for example, developed the same infection.

Diet is a peculiar thing for my mum too. When she is at that low ebb with her fatigue, she generally ends up vomitting up any food that she eats. Again, this is not something that is particularly helpful for somebody already lacking in energy. It is a vicious cycle - she needs food as fuel but ends up losing even more energy from spending hours vomitting after eating a meal.

She also struggles with her concentration levels. Think of it as trying to focus on completing an important task after having not slept for over 24 hrs and you get a slight insight into the concentration it takes for my mum to participate in conversation. That is made even more difficult where there is background noise or several people talking.

It took several years for my mum to be diagnosed with M.E., a condition that is misunderstood by many and does not have a cure. Those with the condition have managing techniques for the numerous symptoms but really do have to take it one day at a time. It is over a decade since my mum was diagnosed. She has not been out of the house by herself or driven a car for all that time - she wouldn't feel safe doing either of those things. It is a hidden illness. If you saw me with my mum, having lunch or sat on a bench by the sea (my mum loves the coast), you would not think there was anything wrong with her. But then you dont see her when she spends days or weeks in bed, with severe joint pain and extreme fatigue, having overdone things on one day, perhaps simply by sitting in a softplay area watching her grandchildren play or catching up with a friend over afternoon tea.

The best way that my mum ever described M.E. to me was after I had been on a long flight and had jet lag. She said 'thats how I feel every day'.

When I take her out, we automatically scout what we do and how we do it - she takes my arm for that extra support, I slow my pace, we look to avoid steps or inclines and I park as close as possible to wherever we visit.

Despite knowing how she will feel the next day, my mum always wants to be there to support her family. She is an inspiration and I want to do something to help raise awareness of M.E. and raise money for her charity, the M.E. Association.

As such, I will be undertaking a series of challenging walks - one day each month for the next 6 months, beginning in March with a 24 mile coastal walk from Padstow to Newquay.... along the cliffs and up and down steep sections between each of the numerous bays along the route.

My mum has said she wishes she could be with me on these walks. That is something that would have been possible before she had M.E. but is impossible for her now. I will be taking each step with her in mind so she will be with me in spirit and will be pushing me forward every step of the way.

In May, it is M.E. Awareness week - the walk I undertake that week will be Snowdon, 8 miles and an ascent of 936 metres. Each walk will be challenging for either its distance, ascent, terrain or a combination of these ...highlighting the fact that each day with M.E. is taken one step at a time.

The other 4 walks in this series will be Ingleton waterfalls and Ingleborough in one day (symbolic for its significance to my mum), Brixham to Dartmouth, Filey to Scarborough and a coastal walk on Angelsey (another of mum's favourite places).

All donations will go directly to the M.E. Association and will help to support people in the UK living with M.E. and to fund the vital medical research into this condition. I will provide updates each month and hope you will help to support my mum's charity in whatever way you can.

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About the charity

ME Association

Verified by JustGiving

RCN 801279
The ME Association campaigns hard to get ME recognised as a severe neurological illness. Our helpline provides essential information and support to adults and children who have ME/CFS, and to their families and carers. We also fund biomedical research into the physical nature and causes of ME/CFS.

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