Missing in Rest

I keep thinking I’ll be well enough to write soon, but eighteen months has passed and soon has not arrived.

When I was last here, I mentioned that bitch payback had showed up. Well, she had much bigger plans than I had first realised, dragging me down to the bottom of crash mountain like a helpless rag doll, bashing me against a few rocks on the way, and then dumping me there. Told you, total bitch.

Following the initial decline in my health (about two and a half years ago) I had put a comprehensive treatment strategy in place and was doing everything my specialist told me to. Everything. But as I was starting to find my way out of that crash, and getting ready to skip off into the recovery sunset, life decided to be kinda mean to me. And despite my gold star worthy patient behaviour, my body was still too fragile, and it was all just a bit too much. Too much led to the rag doll crash, a much bigger and louder crash than ever before, and I now seemΒ stuck at this new level.

I’m just about staying on top of daily life, with the help of my wonderful husband (yes, he’s still wonderful, and yes, I’m still going on about him), a cleaner, and a reduced service on cleanliness, grooming and glamour. And whilst I’m truly grateful that I can still look after myself, and I do understand not being able to do these things for yourself brings a whole other level of suffering, it doesn’t leave much spare energy. So not much else really happens (it’s taken me months to write this rather short offering, but my it’s good to write) and there is a lot – a lot! – of lying down with my eyes closed.

I’m okay, considering. I continue to be drawn to Buddhist teachings – definitely encouraged by a teenage style crush on Pema Chodron – and try to incorporate some of the practices into my daily life. And through a combination of acceptance, being present, meditation, and practicing gratitude for the things I can do, I have found a sense of perspective and peace with everything – well, most of the time. I mean, it’s not my dream life or anything, and there’s at least one moment (sometimes quite a few moments) in every day when I think I can’t do this anymore – when I’m in pain day after day; or I’m feeling particularly awful; or there are hours ahead of lying down with my eyes closed; or the heaviness of the isolation catches up with me; or I’m simply fed up with the relentlessness of feeling unwell every single day. But the feelings always pass – some pass through easily, whilst others, admittedly, disperse via tears or tantrums – and then the sense of peace returns. It’s not an easy way to live, but difficult experiences, in their many many guises, are a part of life, and this one just happens to be a part of mine (and I’m fully aware ‘difficult experiences’ can be far worse than this one). So I do my best to embrace each day as it is, whilst also doing everything I can to recover.

It’s a strange life, for sure, but it’s the only one I’ve got, and it’s the one I’m doing my best to make the most of. And whilst I wouldn’t go as far as to say CFS is a gift (a gift from someone who doesn’t like you very much, maybe), this serious decline in my health has given me the opportunity to look at life differently – it is what has led me towards learning more about Buddhism and other spiritual ways of life (and learning always makes me happy), and it has allowed me to experience life in a more meaningful way. Okay, I’m gonna stop now, before I step too far into pretentious spiritual speak. Anyway, it’s time to meditate.

Thank you for all the messages over the last year or so, and I’m sorry I haven’t been able to reply. But, hey, you’ve been in the best company. Lots of love, Karen… Xx

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6 thoughts on “Missing in Rest

  1. I have read many articles, books, blogs about CFS over the years however you are the only writer I truly do think ‘I wonder how she’s getting on’. So its fantastic to read your blog again, I appreciate how long it has taken you but to me and hopefully others, each piece you write is a lesson, something we can all take something good from. I too have CFS and recently developed fibromyalgia. I am also on a spiritual path that has recently taken me to working with my spirit guides…….the story continues, with love and my best wishes. Sarah xxxx

  2. Hi Karen
    It is so good to hear from you as I too have followed your blog and have been thinking of you over the past year or so. I am so sorry that things have been difficult but as ever you inspire me to continue on my own recovery path. I agree that while CFS/FMS may not always be a welcome gift it is definitely a way for us to stop and look at our lives, our thoughts, beliefs and know that we can change the latter and that although we are not living the lives we planned or wish for , something positive is coming out of this. Like you I have been drawn to Buddhism along my path to recovery- it makes so much sense and during the most difficult times it has enabled me to continue. Fortunately I have been experiencing a gradual recovery over the last year or so and yet I still forget to ( or perhaps avoid) breathe, meditate, journal and practise gratitude- all of those things that have helped me so much. Your post is a reminder for me to slow down and continue to do all of those things. You are an inspiration and I thank you for sharing this post even at this challenging time. Thinking of you and sending love and best wishes Mich xx

  3. Hi Karen,
    Your blog was one of the first I stumbled upon a few years ago when I was diagnosed with CFS. I have loved following your journey and have missed hearing from you over the past year. I’m so sorry you’re having a tough time of it at the moment, but you’ve recovered before and I’m sure you will again. Patience is the name of the game (grr!). Best of luck on your journey. Best wishes, Laura x

  4. Karen, I’m so glad to hear from you! I’m almost embarassed thinking about how often I’ve checked in to see if you’ve posted something. 8) I’m so sorry you’re not better yet. Personally I’m still sick aswell (going on six years), but as of now, ever so slowly improving.

    And Pema Chodron is the best. She’s so funny! I’m guessing you’ve seen this already, but if not, I recommend you watch it when you’re well enough (it get’s funny about a minute in)!

    Maria

  5. Hi Karen,

    Whilst I understand the difficulties you had in writing this I can’t tell you how happy I am to see you have written again. I often think of you and your blog. How you share the reality of how it is with CFS.

    You may recall that my wife is also a long term sufferer with CFS too. Like you, her last 2 years have been very tough and health is not quite what it was. It is incredibly frustrating for her as you will well know.

    Guidance from medical professionals is always about resting and pacing oneself. At times this can be really difficult for her. Also when we try to plan things I always say we’ll “Take each day as it comes”. If one day we wake up and she doesn’t feel able to do something we’ve planned then that is fine, we’ll cancel. Our close friends know the situation and if I have to explain a late cancellation then I am happy to do it. If we’ve paid a lot of money to do something that is fine too, we knew the risks before we paid for the event/trip.

    We continuously live in hope that things will start to improve soon and it is just a waiting game.

    We are also thankfully that we are not like the sister of a friend of ours. She’d been misdiagnosed for years with ME. It turns out that it isn’t ME at all but more a case of some condition (I can’t remember the name) which has been labelled “life shortening”. Scary stuff.

    We are thankful for the health we do have. And like you say it is about finding the right balance that makes what we do have work for us. x

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