We need to speak up for those who cannot by Charlotte Stephens | 07 August 2019

August 7, 2019

Charlotte Stephens, Research Correspondent, ME Association.

Charlotte is the research correspondent for the ME Association and works on an occasional basis from home. She has had M.E. for four and a half years. Here she shares a little about her experience of the condition and what it was like when she was at her most severe.

I’d say I’m quite a ‘classic case’ of M.E.; I led a very active and full life before falling ill with glandular fever in my final year of university and I’ve never been the same since, my world was changed forever. I went from weekly runs and fitness classes to having to sit and shuffle down the stairs.

Managing to go out for a meal for my birthday

Fortunately for me (or unfortunately!), I would class myself in the ‘moderate’ category of the ME Association disability scale, at around 50% disabled most days.

However, on ‘bad days’ I’m at 60-70% and during bad crashes (severe flare-ups of all my symptoms) I slip into the severe–very severe categories, at 80-90%.

The unpredictable and fluctuating nature of M.E. is incredibly frustrating to live with. You can't plan your future as you’re unsure if you will be able to walk next week and yet the people around you who see you on a ‘good’ day tell you you’re looking well and assume that you are better.

What they don’t see are the days where you cannot physically move out of bed as the life force has been sucked out of you and your limbs are painful dead weights.

They don’t see the times when you are so cold and no matter what you do you cannot get warm. When you don’t even have the strength to hold a cup for a drink or your jaw aches after chewing a few mouthfuls of food.

My cat, Tibby, keeping me company during a ‘crash' the day after my birthday

They don’t see the days spent in tears from being in so much pain and the frustration of not being able to spend time with them.

They don’t know that sometimes you have to wear sunglasses indoors because the light hurts and you can't bear any noise.

They don’t know the indignity of being in your 20's and having to have your mum undress you or help you in and out of the bath; the only place where the pain lessens and you can find some relief.

But my time spent in bad crashes is only a taste of what a proportion of people with M.E. live with every single day of their lives. Their ‘good days’ are not lunch out with friends; they’re managing to sit up in bed for one minute.

I can only begin to imagine what it feels like for them. There have been times when at my worst where I remember feeling so scared that this would be my life forever; that I just didn’t know how I would cope.

People with Severe M.E. are the strongest and bravest people in our community, it's just a shame that for the most part we never get to hear from them or meet them.

They live every day trapped inside a body that won’t function and is torturing them whilst all they want to do is participate in the world and live the life that now they can only dream of, whilst grieving for the one they have lost.

They have been so hugely let down and unsupported by the medical system and the government. This is why it is so important for us to raise awareness of this group of warriors in our community; the ones that do not have a voice, but so desperately need to be heard.

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