Monday, June 16, 2014


For many of us with this condition, one of the great questions we have to answer is, how do we have some kind of life while dealing with this debilitating, corrosive disease?

In other words, how do we combine organizing our lives around our disability, while still being able to do some of the things that "healthy" people do. How do we have family, relationships, work, pastimes, a social life, - in any reduced version of these words - while living with something that makes normal life impossible?

I have been thinking about this question more in the last while, in light of my recent relapse. Relapses, for me, are usually products of a combination of an illness or infection of some kind, with not resting at the critical time. In other words, they are caused by my everyday life continuing more or less as normal at a time when I should be taking a time out.

This recent crash followed a familiar pattern. I didn't slow down when I should have, after a stomach bug. I tried to keep going, through a period of illness, when I should have stopped.

It isn't always easy to know exactly what to do in these situations. It was a busy time for me, five weeks ago when I crashed, and I didn't feel that bad with my stomach bug, a few cramps, nothing major. I didn't feel bad enough to believe that I had to take time off.

And the truth is, after having lost so much time already, and having missed so much in my life, the thought of retreating, of shutting things down again, even if it is only for a few days, is difficult to contemplate.

This is the central conflict in a life lived with ME, the conflict between trying to stay well and living a life. It is not easy to strike a balance. In many ways I have organised my whole existence around accommodating my condition, I work in bits and pieces so as I have enough time to rest during the day, I have changed my diet so I eat only healthy, fresh food, I try and insure that I sleep well and avoid stress, and try and not push myself too hard, with work or travel.

And yet I have the same ambitions and drives as anyone else. To me, a life lived within strict limits can be frustrating, sad, it can give a sense of loss. I have the same desire to investigate new possibilities as most people, a desire for newness and progress. I want to move forward, to try and live a life.

Of course, this desire, this drive, this ambition, can be lethal for living with ME/CFS. It is what stops me giving in to the condition when things get bad. And the point is, it is vital to give in when I am not feeling well.

To put it simply, if you have ME/CFS and are not prepared to give up everything you have, or everything you have planned at a given moment, at least temporarily, then you are in trouble. There is nothing that can be "unmissable", there can be no event, wedding, funeral, class, meeting, date, party or day at work that you simply "have to" attend. Everything has to be contingent on health, energy, on being up to it.  

In my case, infections are the critical time. This is when I really have to watch myself, to take huge care, even if I am not feeling that bad. One wrong move at the wrong time can cost me months of my life. I know all this, have missed a huge amount, and yet still continue to have relapses.

The thing is, I love life. I really love it, I do find the world fascinating. I am never bored, and in general simple, everyday things give me pleasure. And being able to work again after so long on the sidelines, is a great relief. And that is why having to check out for any length of time fills me with a strange kind of anxiety, as if I am missing something.

Yet this love of life can be, as I have said, dangerous. It is the unwillingness to rest, to step back - after I have missed so much time already - that can cause serious problems.

One solution to these relapses, would be to be paranoid about keeping myself safe, and not over doing it. To avoid any situation where I could pick up an infection of any kind. To work the bare minimum to survive financially and to avoid unnecessary travel or any kind of exercise. To develop a frame of mind where being well was the only priority, and the everything else - a social life, work, travel, relationships - was secondary.

But that is not in me. That is a life lived in fear and paranoia. I know people who don't challenge themselves in any way, don't push themselves to do anything new, or to take chances, and that is just not me. I have had a lot of the risk-taking beaten out of me by sixteen years of ME/CFS, but I am still a person who is driven towards life, newness, ambition, opportunity, progress.

Put it simply, I like doing things. And "doing" the wrong thing at the wrong time is what can cause the kind of collapse that I have recently experienced. It is activity, simply doing things, that makes us human, and yet this is what is potentially toxic to staying well with this condition.

The key, of course, is balance. Achieving a balance is the goal of a life lived with ME, and I know this, a balance between activity and rest, between drive and caution, between desire and safety. Living, and living well when I can, and resting when I need to. Being mature about it, accepting my limitations while trying to make the most of my limited life.

This is the goal, clearly. This is the goal for all of us, I am sure. But I keep failing at it. It doesn't happen that regularly, but every year or two I have a crash that was entirely avoidable if I had just rested at the right time. And a crash can last from six weeks to six months. They are corrosive and devastating to my efforts to build a life. And yet they arise from trying to live something close to a normal life. It is life itself that poses the great danger to those of us with ME/CFS.  

A lot of the time I cope well with this illness, but in the long term I do not know how to stay well and achieve that all-important balance. I cannot avoid these crashes, and cannot work out how, apart from sealing myself away, a la Howard Hughes, to keep myself safe while still living a life. I suppose that is just something I am going to have to work out, a problem to solve as I go along. 


  1. I've been wondering this too, with PEM any activity even if small just means paying the price, which is a viscious circle. Finding a balance is crutial, but very difficult!
    Take care of yourself

  2. Thanks for your comment, hope you're doing ok, am still following and enjoying your blog.
    Indeed, balance is the key, and very difficult to achieve. I think it is always going to be a struggle to walk the tightrope between rest and activity.

  3. I know just how you are feeling its so hard to pace yourself when you love life.when the sun is shining you want to get out there and enjoy yourself.I ve had ME for twenty two years,and i still cant get it right.When you are having a good day its fantastic.Regards Shirley will be thinking of you hope you will soon be feeling a little better soon.

    1. Thanks for your comment, Shirley. You are right, pacing yourself is hard, and it seems that it doesn't get any easier, even after 16 years for me - and 22 for you! It looks like it is going to be a constant struggle to achieve some kind of balance.

  4. I have been following your blog for some time, even if I have never written before.

    This illness is so isolating, that a little peek at someone else's life - that is someone else who has this, always makes me feel a little less alone. I tried a blog but found it too hard to continue.
    Just wanted to say hi and that your blog is appreciated.

    1. Thanks for your comment, Rachel. I agree about feeling a little less alone when reading about someone else's experience with ME, that is one of the motivations I had for starting my blog. I think it is important for us to share experiences, both from a practical point of view - for treatments and strategies - and from the perspective of emotional support.
      Anyway, keep reading and commenting, and good luck with everything.

  5. PS - in addition to my previous comment, I meant to ask to if you've known others that have had similar experiences with the mask? Dr Julu said to me at some point (infection-caused crashes and such aside), after the initial improvements, a fall would invariably come and he would then have to also help increase oxygen concentrations at the tissue level to get those initial gains back).

    1. To be honest, I don't know - or haven't heard from - many others who have used the mask. One girl did go to Breakspear and try it, but gave it up after a while, not sure if she went back to it.
      I saw Dr Shah, not Dr Julu, so I had no experience with him, but what he said about a fall back doesn't seem to make much sense to me. Certainly in my case, I am low on CO2, the mask provides extra CO2, and so helps. It's not complicated, and I don't anticipate that changing. Though people are different. B'spear also told me that I needed to increase oxygen concentration, but this was as well as the CO2, they gave me some supplements to take that I am intolerant to, but they never mentioned anything about losing the gains made. I think you have to take a lot of what is said about ME with a pinch of salt, even from experts.
      (Btw, did you make a previous comment under a different name? Don't see your name there in list)

  6. The trouble, as far as I can see, is that 'normality' is addictive! I taste a little and I want a little more and I don't stop in time and then.................I crash!
    Good post - thank you x

    1. That's true Helen, once you start getting back to some normality, it is difficult to stop when you need to. With ME you miss so much, so when you feel like you can do things, it is hard to stop in time. Thanks for your comment.