I’m coming out, Believe ME!

This is a blog that I’m uncomfortable to write. This is personal; this is painful but seeing others continuing to suffer has also made this necessary, believe ME.

I love sport. I always have done. My greatest competitor has always been myself; wanting to beat my own records, always striving for faster, further, fitter. The adrenalin rush of high intensity exercise to those Zumba vibes; the exhilarating freshness of running with the rain in your face; the camaraderie of sport; the satisfaction of another PB beaten. I’ve always enjoyed and lived the healthy lifestyle. I little too much alcohol maybe, but physical activity and lifestyle was my way of life.

I love to be around people. My faith inspires me to help those around me; friends, family, community, church and to campaign for those who are marginalized and overlooked in society. I’m not a committee person, I’m a doer and I’m at my happiest when I am ‘doing’. My husband will vouch that resting has always been a dirty word for me. Items on my ‘to-do’ lists were constantly being ticked off and added to in equal measure!

This is who I am. This is also what I lost 20 years ago when my world came crashing down after a particularly bad flu type virus. I decided a week was long enough to have off work and thought I could work through feeling unwell. I soon got worse again and had tiredness, aches and exhaustion just from thinking, like I had never experienced before. I did what I always did; spent more time in the gym to give myself more energy and clarity of thought but something in my system had switched, and so started the downward cycle…

My condition got worse, with repeated cycles off work and continuous frustrating trips to the Doctor that just made me feel like I was a hypochondriac. He talked of Chronic Fatigue Syndrome/ME. All I knew of this was that it used to be referred to as “yuppie flu”. It didn’t seem like a real condition at all. It felt like no-one believed me.

I had no choice, though. I couldn’t do my job, and I was getting worse. For once those ‘to do lists’ were static: I couldn’t complete anything and was too exhausted to add to them. So in desperation I went for a second opinion with works Occupational health Doctor. After a swift 10 min examination, came the damning diagnosis that I’ve never properly recovered from: “I can’t find anything wrong with you and suggest that you just want a way out of work.”

I was totally crushed. How could a trained medic get it so wrong? Certainly there was no offer of help on the horizon, I was on my own. If that’s what medically trained people think of me, what must other people think of me? Ironically it was his diagnosis that gave me no choice but to quit my profession as a Speech & language therapist that I spent 3 years training for and loved.

I spent the next 5 months predominantly bed bound sleeping night and most of the day. My illness had stripped me not only of what I was but also who I was. I still didn’t fully understand what I had or if I would ever get better. My faith in GPs was shattered. My faith in God was tested: I ranted with God for landing me in this no-mans land and yet also found peace in knowing that only my Creator really knew me and was alongside me through all my ups and downs. There was plenty of time for reflection and prayer. When everything else seemed to be crumbling away at least my faith was real.

My husband came only second to God in getting me through those painful early days! He was the only one who really understood how much this illness had robbed of me. He’s the only one who has never had to question whether this illness is real and without his love and support I dread to think where I would be by now.

I’ve never wanted sympathy, just understanding and above all to be believed.

Months on, I did slowly start to recover but discovered how perilous a tight rope activity and ME was. It was like a game of snakes and ladders: I would slowly climb to the top of a ladder only to slide all the way back down that extra long, snake! Despite the backsliding, I was at least learning. Learning my limits; learning my triggers and slowly improving. Being ill with ME is grim. You have no choice but to do nothing, but trying to recover from ME is also grueling. I learnt the hard way that you can’t fight the illness. Those snakes were always there snapping at my heels! I had to learn a new way of living. Exercising for a new personal best had to be replaced by exercising within limits. It’s hard not to chase that endorphin rush but I now get a new buzz from just being active at all.

ME had redefined me as a person and I didn’t like it. I dreaded being seen as weak, lazy, lacking commitment, work shy, pathetic, a quitter, selfish, even unfit! This wasn’t me and so I lived in denial, It was something ‘I had in my past, but had overcome’. I turned my back on ME but in doing so, I inadvertently turned my back on fellow sufferers too.

My ME is never constant, it goes through phases which I have leant to live with. It’s been a long and bumpy road but I made great improvements to a level where I could regularly exercise 2-3 times a week (running & Zumba) plus other physical activities, alongside work (from home) and voluntary commitments. When I’m well, I feel like I’ve got no right to talk about ME and I quickly go into denial again. Even I can question whether I really had ME at all and I’m sure onlookers would do the same.

At it’s worst I’m aware it’s not been as severe as other peoples experiences, yet it has still changed me and redefined me as a person and changed my whole way of life.

It was being invited to speak on Christian Premier Radio by one of my personal heroes, Jeff Lucas last November that challenged me. I had just suffered the worst relapse I’ve had in 15 years (after a misjudged run with my girlfriends whilst coming down with a cold.) I had forgotten how bad ME truly was.

I didn’t know if I could make the journey or talk on radio and I didn’t even know what I would talk about! I confided in Jeff but declined his suggestion of talking about my ME. Even as I was saying it I knew this was for selfish reasons; vanity; protecting my own pride, and clinging onto my old self that no longer existed. The last thing I wanted to be known for was my ME! But it was time to let go, come clean and share what life is like for people with ME. I was weary of trying to hide it and I owed it others who are also struggling with ME to speak out.

ME will never be my friend, but I am learning to live with it like that annoying relative that, like it or not, will always be part of your life!

One thing ME has given me is an appreciation for all the small things in life we can easily take for granted. Nothing is too small to be grateful for when you’ve nearly lost it! Everything beyond that is a huge blessing which I am doubly thankful for.

I’m no expert, but if you’ve recently been diagnosed with ME/CFS then I would urge you to take care with your activity no matter how mild your symptoms may appear. Never exercise if you’re feeling unwell. Try to learn your limits and stick to them no matter what.

If you know someone who has ME/CFS then maybe the best thing you can do is believe them! I’ve never wanted sympathy, or advice from friends, I just wanted understanding, believe ME!

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13 thoughts on “I’m coming out, Believe ME!

  1. This is brilliant. There is so much I relate to here – that feeling of ‘this is not me!’

    What struck me in reading this was how much shame there is among ME sufferers – ME is something to be ashamed of. I don’t think most people really understand that that shame originates from the culture of disbelief from doctors. It is astounding how much power they have, and how devastating a false verdict or diagnosis can be. I am riled by that careless, callous pronouncement that you just wanted to find an excuse not to work. I find it is common among lazy doctors – if they can’t find the obvious, not only do they stop looking but they blame the patient for ‘wanting’ to be ill. It’s lazy science and poor medicine – and it can have a devastating impact.

    Thank you for speaking. You make me feel less crazy.

    1. Thanks Tanya. You are such an inspiration!
      Sharing my blog has made me realise that I’m not on my own with this illness. ( sounds obvious, I know!) People that know me have said they understand me a lot better and hearing other sufferers tell me how much it’s helped explain it to their friends and family has made all my nervous indecision over posting it worthwhile!
      Thanks so much for your encouragement. Now I’ve spoken out, I won’t be silenced…! 😉

  2. Sent this to my daughter who has accompanied CFS for 8 or so years. She replied: ‘the link [was] brilliant today, I really needed it. The last two days have just been pointless, I can’t do anything. I spoke gibberish on the phone to a woman at a photography studio. Luckily she found it funny, but I must have sounded like a nutter!’

    1. Thanks for that encouragement and glad it was of some help. I know that ‘gibberish nut’ feeling very well! Do send my best wishes to your daughter and thanks again for taking the time to reply

  3. So much of what you write reflects my own experience. As you say there is a huge sense of shame among people with ME because of the negative attitudes and disbelief that we face from so many quarters. Thanks for sharing your story.

    1. It’s both encouraging to know that I’m not alone in my experience and yet also discouraging that others have to suffer in the same way. Sharing my story has helped me face up to my shame. I know that the shame only comes from lack of understanding and that lack of understanding only comes from not speaking out…! Thank you for taking the time to reply

  4. Thank you for writing this. Both my wife and I suffer from CFS we have shared your blog with family who are struggling to understand us. I found the snakes and ladders metaphor particularly helpful.

    God Bless you all

    1. Wow! Can’t imagine what it’s like for both of you to suffer from CFS. I’m so thrilled that you found the blog helpful to share with others; that was my motivation for writing it! I’m often quite childlike in my thinking: I like to think in pictures! I do wish you both well and really do want to thank you for taking the time ( & effort!) to reply.

      God bless you both too.

  5. Thankyou for writing this – it perfectly mirrors my experience especially your comment about not wanting sympathy just understanding. Thank goodness for the internet that allows us to share and not feel that we are the only ones who must be mad!

    1. Thank you! Yes, the internet & social media has been the biggest difference to 20 years ago. We can see that we are not alone and helps us keep connected to the outside world even if it is in a semi-virtual way! A big bonus! Thanks again.

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