Take that bitch down…

I already can’t remember how bad it was, I can’t remember the day-to-day details, but the headlines that drift into my consciousness tell me enough: duvet days turned into duvet months then duvet years; shoes collected dust and slippers wore out; exhaustion and fatigue took over my life. I was mostly housebound, using my limited energy to stay on top of daily life, spending hours each day lying down with my eyes closed, not seeing people, not able to read or write, not able to…. not able to…. not able to….

I continued to balance on the thin line where acceptance of ‘what is’ crosses with hope and focus on recovery – too much acceptance and you feel like you are giving up, giving in; too much focus on getting well, and you destroy the possibility of finding any peace in daily life. My default coping strategy remained mindfulness and meditation. I taught myself to be grateful for smaller and smaller things. I continued to try new treatments and new healing approaches. I still laughed. I still smiled. And, of course, I cried. A lot. Being human is hard. And being a poorly human is really hard.

But somewhere in the mix, my health started to improve. After four years or so at home, I have been out in the world again. I am resisting saying I have got my life back, as a life is always a life, whatever form it takes, whether you are in PJs or high heels, one life is not more valuable or more important than another. And I have never subscribed to the familiar recovery story-line that ‘if you’re well, life is amazing, if you’re poorly, life is awful’. It’s grey and murky and complicated. There is still joy to be had in illness, and health does not guarantee a happy existence. But as I dip my toe back into life outside the apartment, life with my eyes open – at a time life is not trying to trip me up in other ways – the joy has certainly been easier to find. I’ve donned walking boots and felt sheer delight at the strength in my legs and the feeling of fresh air on my face. I’ve laughed with friends over too much wine – friends who have made me feel so welcome after my rather long rain check. I’ve been shopping – not sure what to buy, as I work out what my non-PJ look is. I’ve been out for dinners and lunches with my husband. I’ve read books for the first time in four years. I’ve been to family get-togethers and birthday celebrations. I’ve reunited with my neglected suitcase and even left the country (four times, in as many months, actually!). I’ve topped up my culture account at the ballet and museums and galleries.

I am not entirely well – there have been wobbles, and off moments – but I am so much better than I was, that it seems rude to complain about the ‘not quite there’ moments. I still have some work to do on recovery, and that is what I am doing while dancing on that same thin line, making the most of what is. And there are scars to be healed. A loss of confidence in myself and what I can do in life. The – unwelcome – arrival of OCD, which I think started as a way of feeling ‘nice’ when everything else was awful, and then crept into my subconscious and made itself at home. An unfit body that will need more than boot-camp to return to its pre-sofa ways. And a passing of time which changes career – and life – aspirations in a way I don’t fully understand yet.

I may not be quite there (yet), but I am somewhere, somewhere new, somewhere better – a space which is just easier, certainly more interesting, and definitely, definitely more bloody fun. I am sitting in a particularly stylish Italian café (in Nottingham, but hey, the waiter is Italian!) drinking a short black, tapping away on my laptop, and it feels good, pretty damn good actually, to be writing again. There is a little tear that would like to sneak out, but I won’t let it. It’s not the kind of place you want to cry in, more the kind of place you want to look totally cool in. And, as it happens, I’ve just left the hairdressers, so my hair is particularly swishy, and gorgeously root free, so I’m doing alright – for an old bird, anyway (by old, I mean at least twice three times the age of everyone else in here). I haven’t been ready to write up until now, unsure of my new-found health, uncertain of its staying power, scared to stop and think about it too much, I guess. But it’s been a few months now and all signs point to ‘here to stay’.

I know I am lucky to be writing this, to be saying these words, to be out in the world again. CFS is a clingy, demanding, needy bitch and she can be difficult to shake off. There are many others out there doing everything they can to take this bitch down but just not getting their lucky break. I am savouring my luck with the attention it deserves. The kind of concentration you give a glass of expensive Malbec; or the warm pause you feel inside when your niece calls you ‘Auntie Karen’ for the first time; or the first moment you see your husband’s face come round the corner as he returns from a long trip. Proper, full-blown, all the gratitude, savouring.

And, whilst I enjoy my savouring, I wish lucky breaks on all those trying to take this needy bitch down.

10 thoughts on “Take that bitch down…

  1. This is weird but nicely weird! I used to love reading your blog way back but have not seen anything in soooooo long , and was just thinking last week…..” wonder how Karen at the reinvention tour is doing”? Thrilled to hear you are becoming re-acquainted with some of the things you love but had missed for ages.
    I had an amazing nearly 4 years of remission before a stagger into relapse over past 2 years. We CFS folk do indeed live lives in the balance between hope and acceptance. Here’s to hope xx

  2. I can’t put into words how happy I am to read this. From one internet dweller to another – congratulations, thank you, well-done, bravo!

    I have a long way to go on my health journey – moving into a nursing home at 27 was a bad sign, but I am getting better and overtime I read a story like yours it give me more hope and determination to continue the health journey.

    And I can now officially take you off the ‘worry/what happened to her’ list.

    There is Malbec to look forward to – brilliant


    • Hiya Blossom (loving the new name!),

      Thank you for such a lovely comment – feeling all warm and fuzzy here!

      I’m sorry to hear things are still tough for you but glad to hear there have been signs of improvement (signs are the best, eh?). Yes, hold onto hope and determination because people do get well, and maybe one of these days it can be you too.

      *gets the Malbec ready!*


      • Thanks for your thoughts and words of hope, including affirmation about the importance of even ” signs of improvement.” I’ve struggled for several months with trying to be realistic and ACCEPT that I have CFS, and foster some “hope for the better,” rather than allow myself to be consumed into a pit of despair and self-pity. There have been a very few days with a glimmer of improved energy level and focus, but then the tide of exhaustion resumes.Hearing the honest experience of others who have fought/are fighting this battle adds a glimmer of hope to my day today. Thank you super-sincerely for your sharing. I hope you “keep it coming.” Shine on, my fellow companions on this challenging road.🦋🌷

  3. It’s lovely to see you resurface, old girl! Heartening to read such a hopeful, determined, positive spirit permeating your blog. It’s utterly inspirational, especially to those of us who are battling different demons just now, to see that it is possible to weather the storm and all be able to appreciate the breeze in its wake. I hope it’s calmer seas for you from now. Take care and keep that astounding courageous esprit de corps! Dx

  4. Absolutely marvellous to see you back writing. What an awful four years you’ve had but it’s made me so happy to hear you’re doing so well. All the very best wishes for a healthy and happy 2018. And same to everyone dealing with CFS.

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