Monday 12 May 2014

going slowly

Today marks the start of International ME/CFS and Fibromyalgia Awareness week. I've decided to share a few thoughts on the subject of "going slowly" during the next week...interwoven with craft of course!

Before this blog, I've kept other blogs. And in those spaces, I never talked directly about it. Partly because I was embarrassed and partly because I think, well why would anyone want to read about this? But now I realise that being open about it is vital for self-acceptance. Because although I've lived with this condition for now more than 15 years, coming to terms with the fact that I'm still ill has been proving really difficult just recently...

When I was eleven years old, I first fell ill. It has been quite a journey since then.

For many years, my life was at a standstill, passing me by as I watched on helplessly.

For many years, I wore nothing but pyjamas.

Somehow, against all the odds we soldiered on. There were times when the illness was all-consuming. But also brief periods of better health, when I was able to do things like my peers, all be it at a much slower pace: Study a French BA part-time at the University of Bristol. Spend 18 months abroad doing work experience as a part-time language teacher. Complete a language teacher training course. Meet and fall in love with a wonderful French man. Move back to France to live permanently.

In 2012, aged 25, I graduated from university with First Class Honours. The euphoria of that day, where I seemed to have overcome my difficulties and conquer my own personal Everest made me believe that anything was possible. That somehow, the mere fact that I had "done my time" with the illness and still managed to get a degree would mean that now was the time I would finally "grow out of it" as everyone had always expected me to...

Now at the age of 27, life seems to have ground once again to a standstill. The past six months in particular has been very tough, as increasingly poor health has forced me to stop working as a self-employed linguist for the time being.

This time two years ago, I was preparing to take my finals, graduate from University and then move permanently abroad, with no specific job prospects or family nearby. Emerging into adulthood is frightening enough at the best of times. But it's been even harder trying to do it in a foreign country with a chronic illness that no one seems to understand.

There are no longer my parents to buffer the unhelpful comments and incomprehension of people. I've had to learn to stand on my own two feet. And sometimes that takes a lot of my precious energy.

The worst of it, is once again having to re-adjust my horizons, learn to accept my limits.

The past year or so, I've really struggled to accept the fact that I've got this illness for life. Without realising it, I was convinced that once I had a University degree under my belt, this illness would somehow magically disappear and I'd finally be free from it's shadow to get on with the rest of my life. No such luck... 

For months and months I've been feeling particularly under par and that seems to have plummeted me into a rather blue frame of mind. 

But coming away from the valley for a few weeks rest and recuperation with my family is offering me a fresh perspective on things.

The thing that has been getting me so very down these past months is that I felt I was being dealt a raw deal from the Universe by having no choice in whether I was ill or healthy. Now I can see that I do have a choice where before there seemed to be none. If this illness is indeed to be long-term, I can choose the way that I deal with that information.

Either I can go with the perspective that it is utterly limiting to have to live so slowly.

Or I can embrace this slower pace as an opportunity to live a simpler, more sustainable and more deliberate life, one which offers infinite wonderful possibilities, rather than a whole heap of limitations.

I haven’t quite made my mind up yet.


  1. Frane, I think it's truly important - and brave - to actually talk and write about this, for so many reasons. Yes, it can help people understand what you are going through, and therefore be more in tune with you and others who have the same disease. It's also a way to acknowledge (and publicize) the fact that, as difficult it can be on a health level, it certainly does not have to be hard on a social level. In fact, I guess that most people are willing to grasp a few simple notions about a chronic disease so they can actually relate to it.

    Moreover, we all have our own struggles, so sharing with each other our thoughts about the thing(s) that we find most difficult to deal with is also important to help each other realize we are *not* alone with our vulnerability, doubts and fears - and that we *are* being brave, just by dealing with these things. Sometimes we can find a new perspective on it all, sometimes we can't, and it's okay, too. We need to express it all the same - and others need to hear what we have to say on both aspects.

    Glennon Melton (who has Lyme disease) wrote and spoke about this much more eloquently than my comment here ;o)

  2. Such wise words. Thank you for sharing all you shared here. There are so many things in life we can't control but we can control how we approach and react to things. <3