The Heartbreak of Missing Out with ME/CFS

January 9, 2016 2:00 pm

This weekend was one I had been looking forward to for such a long time.

My brother and I had booked to go and see Billy Connolly at the Apollo in London, along with my brothers girlfriend and a friend of mine.

As I type these words, I should be checking into a lovely Spa hotel, with a smile on my face, wearing my new jeans and heels.

But….I’m not.  I’m at home, on the sofa, under the familiar blanket that I seem to be spending a lot of time with just lately.

This is one of the hidden aspects of living with chronic illness i think. One of the things that maybe people don’t really consider. Missing out on huge chunks of life. Cancelling things. Events such as this weekend. Weddings. Birthdays. Holidays. And also the smaller everyday things, such as not having the freedom to live your life the way you would like to. Missing out on having a career. Basically, there are so many missing out elements of living with something like ME/CFS that no matter how experienced you get at all this, it’s still really difficult to deal with sometimes.

As recent weeks unfolded it became quite clear that I wouldn’t be well enough to go on my little London trip, although until earlier this week, the optimistic part of me was keeping quietly hopeful that my body may miraculously spring back to life, or at least, spring up to a level in which I could gather up enough wellness to enable me to go. But, this time, it’s one of those situations where there has been no choice but to cancel. At the moment I can barely keep my eyes open or sit up for more than a few moments at a time, never mind contemplate leaving the house. So the decision was made for me really.

This is the problem with being optimistic when you have ME/CFS.

When planning things you think ‘ahhh I’ll be okay by then’ or as was the case when I booked this weekends trip last summer, I was in a good patch and presumed it would last. The good side of  thinking this way and planning things, is that sometimes we CAN do the things we have planned. Even if sometimes it’s a bit tough whilst doing it and there is pay back afterwards, we get a chance to create some lovely memories and have a little taste of normal life. The down side of being optimistic and making plans being, there are many, many, times where we have to cancel.

The challenge then, is to try and somehow surrender and accept the situation. That’s where the difficulty lies. Keeping your brain in check. Not allowing yourself to slip down the self pitying ‘it’s not fair’ path or ‘what if my life is always like this’ slippery slope.

It’s a tough one.

This last few months have seen me unexpectedly deteriorate on a physical level. I was actually doing quite well until the latter months of last year, despite having been through a lot of emotional stress in my personal life. But as recent months have progressed things have changed. Some recent blood tests are giving insights as to why this may be, which although a little overwhelming, is also somewhat a relief as it explains the downturn, despite me having previous made so much progress, but i won’t go into that in any detail until I know a little bit more.

But what I shall say, is that where I am now, housebound and feeling crushing exhaustion and discomfort at a level that is hard to even begin to describe, is quite a wake up call. It’s forcing me to properly practice all I have learned.

I had a period of time not so long ago, where I got incredibly frustrated with the situation of my increasing symptoms. Fiercely resisting what my body was doing. Trying to deny the current level I am at. The achiever in me trying to cling to progress I had made on the recovery front. Pushing myself to try and ‘do’ things (as much as I physically could – I was failing miserably) and not even consciously realising I had slipped back into this way of being. Convincing myself that if i could continue to just about function, then i was doing okay. (This way of measuring of recovery and wellness never works by the way!)

My body, quite literally, coming to a halt in recent weeks has made me face all this. And for that I am so grateful. I am always shocked at how much illness brings me closer to myself. Wakes me up. Brings to light any old ways of being I may have slipped back in to and shines a torch on areas I need to work on within. Eventually it gives me no choice but to absolutely surrender to what is happening and trust all that is unfolding.

It reminds me of that saying ‘let go or be dragged’.

It’s so true!!! I have two choices right now, I can sit here and cry. And feel frustrated. And say how its not fair I am currently symptomatic to the point of being housebound again. How its not fair that I had to miss my friends wedding last week, and am currently missing what would have been an amazing weekend away this weekend. Missing out on actually being out in the world, for weeks at a time. Resisting the situation I find myself in in every way possible (which is an option I have tried, numerous times, but trust me, it doesn’t lead anywhere other than intensifying the exhaustion and pain in a way you didn’t even think was possible as a result of all the crying)


I can let go. I can realise, that whether I like it or not, there is stuff going on in my body right now, that I can’t change at this moment in time. I can realise that no amount of frustration is going to change things, and that fully entering the place I find myself in right now, in a calm way, is so much more healing. That my body, can’t be forced. It just doesn’t work like that. Reminding myself that the universe has a plan, and I need to trust in it and allow it to unfold.

That I can let go…or be dragged.

Quite literally.

So I am choosing to let go. To remind myself, that my priority right now, is healing. Giving my body the rest it needs, and deserves. Moving gently along this path, that holds its own value. Its own lessons. And trusting that life is unfolding exactly as it should, even if sometimes, my ego would like to try and convince me otherwise 😉




Much love

Emma x

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  • Louise says:

    It is just rubbish.
    Just know that in having that drive to write this is a huge support to someone in a very similar situation right now.

    ” Convincing myself that if i could continue to just about function, then i was doing okay. (This way of measuring of recovery and wellness never works by the way!) ”

    Exactly what I did, with the same outcome! Just feeling a little bit more okay with being away from home for about 2 hrs once or twice a week now so managing very well selected coffee meets. With much restorative rest!

    You are a huge inspiration doing just what you are doing.
    Thank you.

  • rose says:

    I so resonate with the issues of being an optimist with ME! Great to have it spelled out that way though – thank you. So many times when I’ve thought, or said, about a future plan: “I’ll be fine”…. then had to back-peddle. Am doing so currently, about a workshop next weekend that I’d love to go to – am in that in-between state when I now maybe just about could, which I think sometimes is harder to live in than the ‘absolutely can’t’ state that precedes it (not that I’d wish that one on myself or anyone else either), as there’s a choice to be made – shorter-term enjoyment / satisfaction / connection with others, vs., possibly, longer-term health…. The workshop is on voice dialogue – which works with the different selves, or voices, we have inside ourselves…. So, using their terminology, there’s often a discussion going on in me between the optimistic self, the realistic self, the compassionate parent self, the frustrated child self, the keen student self etc etc…. the list is endless! I find it helpful to see it that way though – less of an untidy tangle of thoughts, more of a dialogue between equally valued ‘characters’ that are part of me. And I do really value the optimist – she brings me hope and a view beyond the current situation… and is funny sometimes too … So, having read a travel article earlier on Costa Rica, ‘she’ decided that if I didn’t do this workshop, I could use the energy (and money) saved to travel to the other side of the world soon instead! Go hiking and wildlife-watching – why not?? Possibly the realist should step in soon, but I can enjoy the idea while it lasts!… and who knows…
    Thanks again Emma – and I hope your current phase doesn’t last too long. I really respect your ability to accept, let go, and find a positive in a difficult situation… sometimes I can, sometimes I can’t, so it’s really good to have a reminder of how to work with the difficult phases… x

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