My Story

In March 2003, at the age of twenty, I developed a mystery illness following a viral infection. Two years and numerous medical appointments later, I was finally diagnosed with Myalgic Encephalomyelitis/ME (sometimes controversially referred to as Chronic Fatigue Syndrome/CFS) a relapsing-remitting neurological disorder similar to Lyme’s Disease, Lupus or MS.

Within weeks of diagnosis a reaction to medication triggered the first of a string of relapses that left me bedridden by the age of twenty-three. After two years lying flat in a dark, silent room, too ill to read, see friends or watch TV, I was admitted to one of only two NHS inpatient services that deal with ME. The admission was intended to last only four to six weeks; when I was finally discharged six months later I could sit in a high-backed armchair for 15 minutes at a time, stand for 10 seconds with the help of a frame and wheel my wheelchair the couple of meters to the bedroom door.

Since then my progress has been slow but sustained and several years post-discharge I can sit out of bed for an hour at a time and read, study, write or craft in limited bursts. For the most part, after years of searching, I have found the tenuous balance between doing enough to avoid deconditioning, while not doing so much my activities can’t be sustained from day to day.

I launched this blog in March 2013, to mark the tenth anniversary of the start of my illness. Words cannot convey what it is like to be ill for a decade without a moment’s respite, or to reach the age of thirty with no career, no independence and little prospect of a partner or family.

Current treatments for ME are entirely palliative and little funding goes into biomedical research. Despite decades of medical evidence to the contrary, ME is often wrongly presumed to be psychiatric in origin (although a psychiatric cause would be no less genuine or deserving of care) and the stigma of this can sometimes be harder to bear than the illness itself. The chances of full remission are remote and the risk of relapse high but like many, I will never give up hope of eventual recovery.

While I will always grieve for the life I have lost, I cannot stay in limbo waiting for health that may never return, or fearing relapses that I cannot prevent. If this could be as good as my health ever gets, I need to find ways of living in the moment, and learning to be happy with the little I’ve got. I have no idea what the future may hold for me, but I intend to make the most of every day that passes and I would be honoured if you’d join me in that journey.

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14 Responses to My Story

  1. Awesome perspective! I just found you when you signed up for my blog. Thank you for sharing your story. I’m sure that God is glorified in and through you, even though you may not think so right now!!
    God bless you!!

  2. Reva says:

    You are so eloquent in your writing. I’ve enjoyed reading all of your posts and can relate to parts. I too have ME/CFS, but my story is a little different. Mine crept up on me and I don’t really know what to say when people ask me how long I’ve had it. I was diagnosed in 2006, know I had it in 2002 but avoided doctors after a bad experience with a bad one, and can see signs of it throughout my life as far back as 1992. I feel so fortunate that I am still able to work part time but in recent months I’ve started wondering whether that’s going to last and what to do if it can’t. I look forward to reading more from you

    • Thank you for your kind words. I enjoyed having a nosy round your blog. It will be interesting to see what future research will disclose about different causes/subsets of ME as it seems to differ so much. I was able to work part-time for a while but life was so restrictive I don’t know how I coped. Our time is considered far less valuable if we aren’t being paid for it and so people with all kinds of illness and disability often try to stay in work long after it is medically sensible. Our social value is so defined by employment it is hard to find a sense of self-worth without it.

  3. Miss P says:

    Hi Sarah,
    Just wanted to say thank you so much for your blog. =)
    My worst symptom of ME is ‘brain fog’ so just a short reply…
    but with the warmest of wishes,
    Sandra =)

  4. desdemonad says:

    Thank you for sharing your story, iI’m so sad it struck you so tyoung and so severe. If there is a thing called spontaneous remission I hope it happens to you. I was wondering, how do you follow your blog on wordpress?

  5. Mark Armitage says:

    Thank you for following my “Enlarging the Heart” blog. As it happens, I, too, have been living with CFS/ME for very many years. I am very pleased to have discovered your blog, and look forward to reading your reflections.

  6. I love what you’ve written here, and relate to so much of it myself. I too am a Christian. I too have severe ME. I too turned 30 not too long ago and faced the realization that I am nowhere near where I thought I would be at middle age – no career, no children, unable to get out, etc. And I too struggle knowing I have been sick for over a decade now. While my illness took the “progressive/deteriorating” route, it was difficult from day one and has stolen so very much from me along the way.

    I, for one, am glad you began this blog. I look forward to reading future posts, as well as catching up on past ones as my illness allows. Thank you for sharing your unique viewpoint with the world. Keep up the great work!

  7. Omg, Sarah, I stopped feeding notifications from all the blogs I follow and, when I went back through your posts to see where I’d left off, it was exactly a year ago! How is that possible?! I would look forward to every post and now I have so much to catch up on. Well, happy second blogiversary. I’ll be catching up with you a lot in the next few days. ❤

    • I thought there had been an unusual spike in hits on my blog today – guess that explains it ;0)
      I can’t believe it’s been two years since I started the blog. Where does the time go?
      Sounds from your own posts like you’ve had a pretty rough time in the past year. Hope things are starting to get back on track for you xxx

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