Tales of the Unexpected

I think I may still be in shock, shock that I am here again; a place I thought I would never come back to.

As the gravity of the crash dawned on me, I could feel my heart breaking; I realised how much damage I had done, and what it was going to take to claw my way out of the black hole.

Despite my improved health, my body can still be fragile and sometimes needs to be handled with extra care. And returning from Japan was one of those times: long-haul travel is tough on the body, and jet lag messes even with the strongest of bodies. But unfortunately, on the week we got back from Japan I was not able to dispense the dosage of care I required – circumstances outside of my control (or they felt outside of my control) meant instead of taking it easy, I ended up doing too much. I knew I was pushing, but I didn’t know what else to do; I didn’t know how to say no.

I told myself I would be okay, I would just do what I needed to do and then rest for a couple of days. I couldn’t have been more wrong. I have been mostly horizontal for four weeks: it is the biggest CFS related crash I have had for at least a couple of years.

At first I was in denial that my body could be so broken again – I thought I had worked hard enough on recovery and that my health was now strong and resilient, that it would never arrive back here. I was devastated – how could everything change so quickly? How could I go from swanning around Tokyo to being plastered to the sofa? From doing circuit training four times a week, to wondering if I could manage a shower? From planning my next steps into the writing world, to it taking a week and a half to write one blog post?

But once I got over the shock and accepted where I was it became easier. I had a very clear mission: to listen to my body and take as much rest as it needed to get back on track. Plans were cancelled, writing commitments were rescheduled, and trainers were hidden at the back of the wardrobe. My strategy was to take one day at a time, make each day as lovely as possible, and be kind to myself and my body.

It has been hard – the hardest few weeks for some time. I have been incredibly isolated: there was a two-week period when Mike was only here for one night (although sometimes it is easier to be on your own and have total control over how you use your limited energy), and I haven’t been well enough to see my friends.

I have tried to have a small walk each day to keep the cabin fever at bay. And walking along the canal is soul medicine at this time of year, with the fluffy chicks to ‘ooh’ and ‘aah’ at. And there is a Starbucks about ten minutes along the canal, and it’s amazing how five minutes banter with my favourite Barista can lift my day when the isolation is all-encompassing.

I have found it difficult to talk about how hard it has been, fixing my brave, positive demeanor in position. People are busy and their lives are carrying on at the same fast pace around me. I am living in a parallel universe and my sense of reality is so alien to anything they can imagine; maybe you only truly understand if you have been here yourself. And it’s boring isn’t it? Who hasn’t heard the ‘Karen is having a bad patch’ story? Yawn. Yawn. (Maybe I should be pressing delete about this point!)

But I have somehow managed to hold it together. I have tapped into my inner strength and determination, to keep my mind positive and my spirits up. And I have not gone down the ‘poor me’ road. How can I when I know that there are people who are far worse off than me? If anything, it has reminded me how lucky I am to not be this ill all the time.

Inevitably though I keep going over what I could have done differently to have prevented this crash. I don’t regret Japan: it was an amazing trip and my health was perfectly normal whilst we were there. And to be honest I don’t think Japan is the real issue here – I think if I’d had more control over my time when I got back this crash wouldn’t have happened. Perhaps I would have handled things differently if I’d known the price was going to be four weeks on the sofa. I don’t know, life isn’t always that simple.

I think the black cloud of fatigue is starting to lift. We went to lunch at the weekend with some friends, giving me a much-needed break from the sofa, and a small taste of the life I have been missing, a life I can’t wait to get back to. Maybe I am being naive, but I expect to come out of this crash soon and be as well as I was in Japan. And that is what’s keeping me going, knowing what is possible.

And the lesson – because there has to be one! – is after all these years, I am still useless at listening to my body. Honestly, how hard is this to grasp woman? Maybe this time I will finally get it. Maybe.

Oh, and I’m sorry if I was your poster girl for recovery, this must be almost as heartbreaking for you to read. But don’t panic… I am on my way back to a wall near you!

15 thoughts on “Tales of the Unexpected

  1. Oh no, you are my poster girl for recovery. No just kidding you are so much more than that… a kickass, childless (something I’m coming to grips with), world travelling, brave writing, funny, poignant woman.. who hasn’t had a miracle recovery from me/cfs and is despite years of learning, still human enough to miss her body’s signals occasionally.

    Thinking of you and hoping that this crash passes (before the boredom monster gets you 😛 )


  2. Glad to hear you are on the road back. Is it true you didn’t leave wiggle room for the possibility you wouldn’t be able to control things when you got back? This is different to not listening to your body I think. And would lead to different strategies to avoid it happening again. Looking forward to seeing you back on my wall.

    • Hey, you’re back! Hope commenting was straight forward today?

      There certainly wasn’t enough wiggle room, but I’m not sure what I could have done. It was my Best Friend’s wedding a few days after we got back, a date we didn’t know about when we booked Japan. I tried to take it easy the couple of days before, but I was quite poorly on the morning of the wedding and if it had been anything else I wouldn’t have gone. Listening to your body and life don’t always go very well together!

      But yes, definitely need to make sure I plan down time for the week after trips (which I usually do).

      Hope all is good with you Evan…


  3. So sorry to hear you have crashed. Yes, it is difficult to listen to our bodies when we so desperately want to be out in the world. Yes, you will get better. Don’t worry about falling off the pedestal; we are here to catch you.

  4. Oh no, guttered for you :(. I’m so glad you were well enough in Japan to fully enjoy the experience, but so sorry about the crash :(. Will you be re-embarking on the Lightning Process? Or is it something you never really quit? I’m still crawling along myself… I hope the energy will be reignited… Soft hugs

    • Hello Miss ‘Sleeping Beauty’

      Thank you so much for your kind words. And yes, I am so grateful that I got to enjoy Japan in all its wonderfulness.

      I’m using everything in my recovery tool box! So yes, the stops are getting a good airing. As you know, keeping the mind calm in these situations is half the battle.

      It is lifting, just not as quickly as I would like!

      Hope you’re crawling at an okay pace…


  5. Aww, big sympathy and big hugs. Been there, know how you feel. Feels bloody frustrating, upsetting and depressing and it’s easy to beat yourself up. Be kind to yourself though m’dear. You only pushed it by a few days really, and it was mostly circumstance driven – who was to know it would lead to this much down time? If you don’t bounce your boundaries how do you know what your limits are? I had my mercury fillings out three months ago (v safely) and am finally only just recovering from the anaesthetic! Rediculous! Just trust that if you use your tools and stick to “the rules” the body will respond. No need to get too scared. Sure, it’s not much fun but you will get there. Even those who’ve recovered have these blips. Frustrating though isn’t it – not to have those hidden reserves that non CFS seem to have. Mind you – a lifestyle where we don’t “push” too much is probably a preferable option. Life before CFS did seem incredibly manic and I don’t remember being very happy…….;)

    Feel better soon honey!

    xx Jo

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  9. well darlin’…
    why do i feel as if i know you?

    i am sympathetic in a kick-ass sort of way… yes, i envy you had a trip to parts unknown but we must remember to say a big fat “NO!!!” once in awhile and if “NO!” is not honored, well, better to know than not. was that harsh? i didn’t mean it to be but my hip is killing me after laying here with a laptop on it for too long… damn this illness and how it seems to take on a life of it’s own.

    not to get overlong here but acceptance, for ME, is key…acceptance if i am not showered in 10 days, eaten anything other than almond milk, GF whatever, rice and a banana, been decent to husband, didn’t kick my sweet too -big dog 😉 [ she makes me smile just thinking about her], and maybe did a few little doodles in the old moleskine..no, that’s not true, i rarely feel motivated lately to be artistic in ANY way at all.

    i wonder if i too should be forthcoming in my journey back to health-now how positive was that? i was back in 2008 when i began my blogging “career”, as such. i was Ms. TMI and soon regretted it. But that was then and this is now. reading your story and the way you tell it, engenders such deep compassion and also, yes -i shall admit it- a certain sense of it will be OK as i am not alone-feeling.

    perhaps that is why we blog …

    thank you for your courage and inspiration for all who come this way(like me!) i will follow your every word. i hope you too will enjoy my meager offerings tho they are not nearly as often as it is whispered they should be for REAL blogging. oh well, i was never one to do things in the ordinary ways. rather a rebel. YAY for that!
    😉 xox

    • More lovely and entertaining words – thank you Linda.

      Yes, I need to find a way to say no sometimes for sure… Wise words indeed.

      As for acceptance, I always struggle with this as it feels like giving in; rationally I know it’s not but in my heart it feels like it.

      I have loved having you hang out on my blog – you are a total darlin! Xx

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