Wednesday, 24 December 2014


notepad ipad floral calendar red check gingham blog photo phone samsung galaxy lessons learned me/cfs myalgic encephalomyelitis chronic illness

1. Life's too unpredictable to not make the most of now

With this being my second Christmas affected by ME / CFS, it's clear that I won't be getting my pre-illness life back overnight. In May, I made a concerted effort to stop wishing the time away until I feel better and start making the days count in the meantime.

2. It's okay not to be okay

This year, I've realised that in order to maintain a positive outlook I need a clean slate. Processing and releasing negative feelings as and when they arise gives me exactly that.

3. The internet is wonderful

When you're unable to leave the house a great deal and social situations are exhausting, life can get a little lonely. Interacting online with others in similar circumstances has been a lifeline for me since I fell ill. I feel incredibly lucky for the kindness and support shown towards me through this blog and social media.

4. There's more to me than my chosen career

Resigning from my job brought on a minor identity crisis. Having put so much time and energy into becoming a Speech and Language Therapist, I felt quite lost when it was no longer something I was able to do. In a way though, it has been a blessing in disguise and allowed me to realise more of the other, arguably more important, things that intrinsically make me 'me'.

5. Classics aren't scary

When reading became difficult, I started using the Audiobooks app.In an attempt to make the most of the time on my hands, I've been slowly working my way through classics and have been pleasantly surprised at how many I have enjoyed.

6. Refusing help isn't admirable

Accepting my new limitations has been a real challenge. It's taken me quite a while to realise that struggling on without help doesn't do anyone any good in the long run. People who care want to help. Allowing them to do so is better on both sides.

7. There's a long way to go in terms of accessibility

Now that I'm living in back in a city, I've needed to use my wheelchair when out and about. I've been shocked at times at how poor wheelchair access is to shops and public places. This is something I will be making a point of raising whenever I encounter it in the New Year.

8. Healthier food, healthier mind

Staying positive with chronic illness needs a bit or work. I've found that it's that much easier when I'm giving my body the right fuel.

9. Experiences > money

Being on a tight budget doesn't leave a lot of 'fun' money. Looking back over the year though, by far the nicest moments have been those that haven't cost a thing.

10.  Uncertainty is freedom

It's impossible to say what this coming year will bring for me. A while ago this would have terrified me but lately it has felt incredibly liberating. I don't need to be trying to get back to exactly where I was before I fell ill. I can start afresh with brand new goals and ambitions.


Sunday, 7 December 2014


girl wheelchair floppy hat reaching acceptance me/cfs myalgic encephalomyeltis chronic illness freckles and all blog

Since the onset of ME/CFS, I've had to let go of a lot of preconceptions about how life in your twenties should be. Where I had imagined myself at the peak of physical fitness, building a career and drinking cocktails at weekends, I'm more often found working on small craft projects in my pyjamas between naps and rest breaks. Getting my head around this deviation from 'the plan' has proved to be a real challenge and accepting the limitations my illness brings hasn't come easily.

Relinquishing my independence, my job and a great deal of my social life to chronic illness has led me through countless cycles of grief. With every 'loss', I've entered into a process of denial, frustration and sadness before finally reaching some level of acceptance. For a long time, these cycles were almost back to back, with very little breathing room in between. Every tiny change from life as I knew it brought on a painful internal battle and new fears about the impact chronic illness was having on my identity.

It's been a huge relief lately though to notice that those grief cycles are gradually getting farther apart and I've been feeling far more at peace with myself, my health and my current situation.

A major sign for me that I must be reaching a new level of acceptance was that my concern on updating my Facebook profile picture recently was not what anyone might think of the fact I'm in a wheelchair but what they might think of my slightly more daring choice of hat. Given that only a few months ago I felt very uncomfortable being photographed in my wheelchair, I think I'm definitely making progress.

I wouldn't say that I have fully accepted my illness, nor am I sure I want to entirely, but I'm certainly far happier for not fighting it at every turn. As much as I don't want it to be forever, ME/CFS is part of my life right now and I'm learning to be okay with that.
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