Walking a tightrope

It’s only been the last few months where I have really started to take my M.E. seriously (or chronic fatigue syndrome, CFS, whatever you want to call it). Recently the NHS sent me for an assessment, they asked me so many questions about my childhood, habits I had, my teenage years etc. I couldn’t see the relevance at all. At the end the therapist said to me, “do you realise that you’ve had M.E. all your life? And now that kiddo is here you dont have the flexibility to manage it anymore”. Turns out I had been managing it, even as a child, so that it didnt affect my day to day life too much.

When kiddo came along I noticed my health rapidly deteriorate. Those in the same position as me (parent carers) seemed to be coping so much better. I put it down to kiddo’s horrendous lack of sleep. And yet there were people dealing with the same sleep issues as me and still managing to go running and keep social engagements. I told myself I wasnt working hard enough. And that’s when the hospital trips began.

I’ve had several trips to A&E these past few years, more than one by ambulance. I would get an unimaginable pain and collapse mostly. It was only my last trip in January where I realised I needed to start taking my health seriously. I lost vision in my right eye. It was swollen, infected and vision was so blurry I could barely see out of it. The doctor confirmed I was very unwell and it was down to exhaustion.

It’s taken months to re learn how to relax. 4 years of chaos meant my habits were less than healthy. I was constantly in survival mode. This morning I said to my husband, “I dont know if I’m relaxed or just so tired my body is forcing itself to shut down”. But even today, after several months of practicing relaxation and mindfulness, I panicked that I had forgotten an appointment, an essential email, a job that had a deadline. I checked my ever growing to do list over and over again. Nothing needed urgently doing. Sure there was stuff on the list but it could wait. Why? Because my own illness is no longer an inconvenience. It’s an essential part of our survival plan. Of course kiddo comes first but if I breakdown so does our whole flimsy, unstable equilibrium which we work so hard to achieve.

But I will admit that a part of my mind never shuts down, it never relaxes. Its constantly scanning the horizon for the next threat, the next bump in the road, the next disaster. A family who has additional needs doesnt experience periods of rest and calmness for long, for something so simple can knock you off course. It used to be that a death or family break up would be what so callously grabs you from walking the balanced path of life. Now it’s a change in weather, a product changing their packaging, the common cold.

I know one of these will grace us with its presence soon, but right now this second (and I mean this very second) everything is in balance. Even my M.E. and I’m going to breathe it all right in.

Thanks for reading,

Danielle

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