Monday, 13 September 2010


Ok, time I came clean about why I'm feeling a bit down at the moment.

Most of my 10 years of elephant carrying has been fairly predictable. After an initial year spent bed/housebound I made it back to a level of functioning which allowed me to work, and even attempt a degree course (which I was unable to finish I'm afraid!).

I mostly poddled along day to day, coping with my symptoms and limitations as best I could. These were at times quite debilitating, but occasionally I managed periods of relative wellness, (it's ALL relative isn't it?) at one point I even managed a trip to Mongolia and rode horses for days on end!

At some point in each of the last 10 years I have had a relapse, crash, setback, whatever you call it, it's the same old beast! These crashes have always been debilitating, disabling, difficult to manage, mood-shattering, and above all scary. Who's to say how long you'll be feeling this way, and what happens to family life, work and all those other commitments whilst you are unable to contribute? Your daily energy, health and resilience reduced to a fraction of what it was just weeks before.

These relapses have meant I needed months off work, only able to return when I felt it was possible. Work were always understanding, and some semblance of a normal life (whatever that is?) could be resumed. This last 'crash' has been quite different however and has opened up a whole new set of worries for me.

In October last year I had an accident, and a week or so after that my latest relapse started to kick in. My injuries made it hard to lie or sit down, so in the initial period after the accident I was not able to rest as I would have been doing normally. As I write this and read it back I am beginning to see how stupid I was to be surprised I had a relapse..... injury then no rest...."Doh!"

Still, I had an initial month off work and a 'managed' phased return to work was agreed and started. Yes, I know it makes no sense NOW! Just a month off for a ME/CFS crash! I thought that the slow and steady return to work was going to be the best option and I stand by that...... but I should have been healthier and taken more time to recover before trying it!

Since December's return to working just two part mornings a week, I have strived to do as many hours as I can. I have spent each week pushing myself to up my hours and return to a full working week as I have always done. It has been nearly a whole year since this ME/CFS relapse started and although I have had some good days, it shows no signs of lifting and allowing me to settle back into my limited but fairly stable existence. I can manage working part time, but it is eating up my energy, and my life out of work is suffering to the point that it often becomes extinct!!!

I pushed myself constantly over this last year, and I can't help but wonder that if I'd not done so, would I have managed to return to work better and more fully than now? I don't know, but I DO KNOW how sick I feel almost all the time of late. Whether I'm at work or at home.

So now for the honest and heart-on-my-sleeve bit........ I am inevitably starting to ask myself difficult questions. Is this it for me now? Is this level of health/sickness my new 'norm'? Can I return to how I was this time last year, and manage to work as before?

Having a crisis of 'positive thinking'!


  1. Ouch! Nasty that you're going through this. Are there any elephants you can put down for a while?

    No wonder you've been feeling down. You take care of yourself now. Big hugs ((()))

  2. Wowee Jo!
    You posted your comment almost before my post! Ha Ha!
    Thank you for your kind comment and big hug! I could do with a few of those just now!

    Makes a huge difference to know someone understands what i'm blathering on about....Thankyou


  3. Well you can only do what you think is best at the time. No point in beating yourself up about did what you did with best intentions. Whether this is 'it' is another matter. Maybe if you can go back to work and say you misjudged the effect of the accident and you need a longer period to try ( note the word 'try'..i.e. you make no promises )to regain some strength you can give yourself space to rest properly.

    Last year from about Jan 2009 was appalling for me. I was so ill again...almost bedbound again and trying so hard not to be. Gradually I've managed to almost get back to where I was but it has been very gradual and very scary.

    Try and have a word with work and explain and try to stop trying so hard [ oh I'm so strict sometimes but I know you love it :O) ]

    Another hug (*)

  4. Cusp,
    Thanks, I wasn't beating myself up about it, haven't the energy, and there's no point. I do sail along quite happily most of my time, but just sometimes............
    I am in a strange situation at work at the moment, through no fault of my own. My attendance is not an issue, but I'm not sure how I stand there just now, there have been some difficult meetings etc. So no go there I think!
    I'm so sorry to hear about your year, well done for coming through that and regaining strength and health. No mean feat girl!
    Yes, scary it surely is.

    ooh, tell me what to do...!
    Made me laugh Cusp!
    Hugs to you too,

    Zarla xx

  5. I continued to work when I shouldn't have and I still wonder, eight years later, whether it's one of the reasons my CFS is so severe. But, in truth, I don't know. None of us seems to understand what might be harmful in the long run. We just know how to deal with the short run -- meaning that when we crash, we have to rest.

    At least that's how it is for me (maybe I shouldn't have been using the royal "we" in the paragraph above!).

    I wouldn't assume that this is the new normal for you. I don't know if you read Sue Jackson's blog but she had an extended crash last winter and was wondering if this was her new normal, but then was able to camping with her family and have a good summer.

    I share your frustration at not knowing what the future will bring with this illness. That's mostly what I wanted to say...

    Love to you,

  6. Toni,
    Thankyou for sharing, I am very grateful to you, as I am sure things are a challenge for you at the moment too.

    As always there is such a lot of great advice, friendship and support from the guys that live in my laptop - thankyou ALL from the heart of my bottom!

    You are so right, how can we be expected to know the future, and make decisions based upon it. What with Jo, Cusp, Stacy, Yourself, and the facebook comments I have had just lately my spirit feels positively uplifted.

    Take care Toni, I will if you will!

  7. hi z, i have seen this comming for sometime now, but you had to learn by your mistakes and come to terms with it. as what ever i said. but i am here for you if you want to chat on fb or phone.
    i think we all go through this denial stage and try to ignore the fact that we cannot do what we use to. but want you except the illness and pace your self life doese become slightly easier. take care love jo xx

  8. I can't answer the question - mainly because I'm asking myself that a lot too. But I know I have been worse than this and better than this so that rationally means there's room for movement. I just don't know when or how to get it going in the right direction.

    Sounds like you know where things went wrong relative to your normal experience and recovery from crashes. But that surely doesn't necessarily mean you're stuck. But it may take a longer or different approach than you're used to in order to get back to where you want to be?

  9. Rachel,
    Yes the pattern of this crash is different and so i'm more uncertain of the outcome. I like your thinking, room for improvement sounds great to me.

    As for how to kickstart that improvement....the million dollar question!

    I think I've no choice but to be more patient and less stressed/nervous about it, as that can't help. It will still take time, it's taken over double the normal length of recovery time so far, and counting!

    You sound like you've had better times too, thank you for taking the time and energy to comment Rachel, I appreciate it.

    Take care


Any comments?