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09/05/2016 Action for ME – Louise’s story

Louise: “My biggest thing was acceptance”

I became ill in January 2013 after a horrific tooth extraction. Days later I started to feel unwell and by the end of the week I collapsed. It went from there.

It started off with me getting pins and needles. I felt like I’d lost the left side of my body. I was getting heart palpitations. I was getting such extreme exhaustion that you just cannot express: you cannot describe how the exhaustion grips you. I had aches in my body, right deep in my limbs, that were very painful.

I just could not sustain a normal life and I thought life was very bleak for me. At one stage doctors thought I might have had multiple sclerosis.

I was eventually diagnosed with M.E. in September 2015.

Work knew there was something wrong with me. My colleagues at Britannia Construction recognised that sometimes I couldn’t even walk across my office because I was in so much pain.

Supportive employer

I told my employer when I’d been diagnosed and gave them some booklets and information that I got from Action for M.E. They’ve been very supportive and have given me rest periods when I need it, and offered to let me reduce my hours if I need to.

With my wider family, I still don’t think they fully understand the extent of the condition. I think they can tell from the way I am and from my appearance that I don’t look well and they can see that I’m struggling, but they don’t understand why I’m like that.

If I didn’t have the support of my husband, and the support of my children who are 16 and 12, I wouldn’t be here where I am today. He’s been my lifeline. He recognised straight away how I was struggling and he’s been tremendously supportive of me.

My biggest thing was acceptance. I was running 25 miles a week quite easily, so when all this started and I was barely able to walk across my living room it hit me really hard. Until I accepted my condition I wasn’t able to look into things that could help me. Once I did I started slowly getting better.

Now I’ve started building up to doing a 5K run by finding what I can do with my baseline and gradually increasing it so that I can go back to the gym and slowly do exercise again.

Even on my good days I will never be the person who I use to be. But compared to how I was last year and the year before, I’m feeling better.

Setting myself a challenge

When I was diagnosed, I was put on a programme with the M.E./CFS clinic at Gloucestershire Royal Hospital up. With the techniques taught from the programme, I had to accept my illness and learn how to pace myself. I started every evening going out walking 150 metres, which was so frustrating, but that was all I could walk. By December, I could see some light at the end of my tunnel.

At that moment, I said to my husband, Rob: “I’m going to run the Bristol 10k in 2016.” He knew with my determination that I would.

Through the support of my wonderful husband, my children Harrison and Amelia, Action for M.E. and M.E./CFS clinic in Bristol, I feel ready for the challenge I have set myself: the Great Bristol 10K. I am very passionate about supporting Action for M.E. so they can continue their work to fund vital research and continue raising awareness of M.E., and to thank them for the support they have given me.

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