Tag Archives: ME/CFS

I’m no Florence Nightingale

Florence Nightingale, social reformer, statistician, prodigious writer and the founder of modern nursing.
florenec nightingale

I am not on money.

I have never been to Crimea.

I am not a nurse. (While I watch all the medical dramas on TV and sometimes make fictional diagnoses, I never look at reality medical shows- that’s real blood and guts and gore. No thank you. Paracetemol, plasters and healing kisses exhaust my nursing repertoire. I’m super at hugs and ok with the sick basin. Anything more complex is outside my range.)

You may be surprised that Ms Nightingale and I have anything in common at all. Fatigue?Pain?  Oh, yes. The founder of modern nursing was bedridden for years with symptoms now recognised as similar to ME and Fibromyalgia. That’s why 12 May, Florence Nightingale’s birthday,  is an international Awareness Day for those conditions.

The regular reader is familiar with my burblings about ME. It’s part of my life and I have had to adapt my everyday expectations to the reality of long term exhaustion, brain fog, random aches and pains, the feeling of being cloaked in lead, the utter boredom of it all.

I just can’t imagine Florence Nightingale complaining about the boredom, even as she struggled to move in the bed. By any standard she was a remarkable individual, with world changing achievements.

I’m all for awareness raising, but the date? I’m not so sure about that. I feel set up to fail.

Imagine the conversation…

‘Why today?’

‘Florence Nightingale’s birthday. She had these symptoms. It’s really not a new thing.’

‘Oh, I didn’t know that. So she created modern, trained, nursing, was highly influential in politics, health and planning and was a statistician. What did you do today?

‘I changed my pyjamas…’

From an earlier post : There’s no formula, just trial and error. Stopping and starting. Resting. Re-framing ‘doing nothing all day’ as ‘pacing’. Considering being able to get out of bed before lunchtime as an achievement. Being paralysed with anxiety, unreliable, weepy. Pains in random places. The room spinning even when I’m lying down. Never feeling good enough for the people in my life.

There’s a reason I’m not active in ME groups. I hate that this is my life. I think about it as little as I can. Despite what you may think from the mumblings and moanings on this blog, I refuse to be defined by my ME. It is not me. I’m still angry and resentful and not able to do what I want to do. I don’t want to honour it with any more of me than it already has.

Take away messages from ME awareness day? ME is rubbish. Loads of people have it. There’s no effective treatment. It changes life totally. Not a bit wonder so many of us develop anxiety and depression after a while. And most of the time we don’t even look sick.

time to panic

Yesterday was one of those days. I had things to do, places to be, and I was anxious as all get out.

These were not fancy, exciting things. I get more stressed by personal admin than I do by Grand Events.

My list?

  • wash hair
  • walk Jake
  • go to bank
  • return library book
  • meet friend
  • walk Girl2 to ballet
  • buy printer ink

Ah, I can tell you’re all quaking in your boots. A list designed to defeat…

It was a day I yearned for the energy and clear head I once had. When I worked full time and didn’t consider washing my hair a task. When banks and library books and ink were done around the margins, without planning, without medication.

as if I'd wear heels like that to work!
as if I’d wear heels like that to work!

I did everything (hurrah!), but collapsed into bed at 8pm, sore, overstimulated and unfit to move. I was actually delighted to get everything done- especially as my friend and colleague has a brain that works at a million miles a second. My plodding pace and repeated ‘what do you mean?’s meant that our quick coffee lasted for over 2 hours, and I ended up with a long list of things to read and consider and progress. That’s about 3 or 4 weeks good work for me, and she has it all done by this morning.

Most of the time I don’t think about what was, I get on with managing what is. But sometimes, oh, sometimes, I’d like to able to do more than one thing per day without needing more of the anti mad tablets.

pace yourself, woman dear

For those of us with limited energy, careful pacing is an important self management technique. Properly used it should help us cope with ebbs and flows in energy, by planning what we can reasonably be expected to do, and then resting. Building up, in teeny steps. Plateau. Build.

I’ve bought the books. I’ve read the leaflets. There are useful websites, and maybe even an app. I’ve spent time learning, with occupational therapists and at home.

Pacing is not about going flat out for a few days because something is ‘necessary’ or ‘interesting’, and then spending the rest of the week (if lucky) in bed.

nap

Why can I not remember that?

Ah, well that’ll be the brain fog, forgetting that I need to pace.

On the other hand, that’ll be the curiosity, the mind sparking, the not wanting to miss a moment of what’s going on.

Me and ME- unpredicatable, unreliable and a joy to live with. Isn’t Spurs Fan a lucky chap?

image from pinterest