Tag Archives: chronic illness


[this is a post regarding my life living with ME/CFS – to see more posts regarding this topic, click.]

“I need to know what is causing it! And why it’s worse again!!”

Consoling my close friend, who has sadly just been diagnosed with ME/CFS after several years of ill health, was more difficult than I thought. I watched her grapple with her new limitations after previously living an athletic and energetic life; I watched with concern as she sat so subdued in social settings…vastly different from the vivacious and outgoing person I knew; I watched her as she adjusted her diet to perhaps the healthiest sort that could possibly exist, cut back on her activities and rested extensively, and yet saw no improvements to her health. And I had so few answers for her.

“Why??” She complained, and then stormed off to eat the cake and chocolate she had so long been depriving herself of, as not eating it didn’t seem to make any difference anyway.

And as I watched her emotional upheaval, I started pondering the idea of acceptance.

How with situations such as chronic illness that are so far out of your control, you simply have to get to a point of accepting that you won’t find answers, accepting that this is how it is for now, accepting that you really don’t know what the future holds, and then choosing to make the most of what you’ve got.

Easy, right?

I confess, I suddenly felt a little proud. I’d accepted it. I’d dealt. This was my bitter pill to swallow (sometimes literally…you should smell some of the supplements I’ve tried!). My mountain to climb. And here I was, staying well on top of my uni work, taking loads of rest breaks, sticking to my dietary restrictions, being ‘mindful’, balancing my social life – I was in a good place. A great place. Plus, things were looking up – was feeling the best I had in months; surely, this was just the beginning.

Cos I’d accepted. Hooray, I’d figured life out. On the up and up.

And then came an outbreak of hives (what the hell?? didn’t even know what they were before). And a particularly bad reaction to some new treatment. And a significant relapse.

And bam. I realised, acceptance is a journey. A process. You don’t arrive. It’s continual.

Cos honestly, right now as I’m spending yet another evening in bed with aching legs and an aching head and a truckload of unfinished uni work that my brain refuses to focus on and a jumble of illness-induced stress and anxiety, I don’t want to accept this.

I’m not where I want to be. Literally.

But I’ll remember that good place I found. Take a breath. Take that step. Grab the hand of my friend and together…we’ll find our peace in this.

CFS/ME readers, what have you found has helped to bring you peace/acceptance on your journeys?


why my nanna nap turned into a 3 hour coma

Apparently I am still sick.

I have lived in denial for years; after painfully watching my mum and sister suffer from debilitating CFS/ME for years I was determined to make the most of my good health. I mean comparatively, I could do so much more than them, even if I wasn’t as energetic as my friends.

But after a longer-than-normal recovery time following surgery when I was 17, I too was diagnosed with ‘aspects’ of chronic fatigue syndrome. I have since lived mostly in denial, so determined in fact to live a full life that I have pushed myself several times to a physically dangerous place, firstly by committing to an incredibly physically demanding internship when I was 18 and then last year working 70 hour weeks in Guatemala. For some reason in my need to ‘prove’ to myself what I can do I seem to push more than any sensible person ever would. Even when I feel like collapsing, for some reason I can just keep going…until I do collapse.

And then I collapse for awhile, rest up, and slowly build back to a reasonable level of health.

So when I had to return from Guatemala last September because of recurring symptoms and a digestive system that wouldn’t heal following several parasitic infections, I was sure that a few months of rest and eating well would fix me up again.

But this time it hasn’t.

I feel like I have the flu all the time, pain and headaches and incredible fatigue and disturbed sleep; I can hardly eat and feel sick every time I do. I find it hard to concentrate and feel completely emotionally spent.

And yet I find myself once again overcommitted: studying full time (for the first time in 5 years…little overwhelming!) AND working 2.5 days a week AND volunteering for an aid and development organisation.

How do I get myself into these messes?? Why do I find it so impossible to cut back and accept my limitations? And how do I deal with the frustration of being so sick when I am so full of ambitions and dreams?

I am so grateful for all the amazing blessings I do have.

But right now, dealing with this illness is so very overwhelming.