Tag Archives: ME

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.

homework (for Janie)

In a burst of Oh I feel awake and reasonably alert again, hurrah! I started two of the Future Learn courses this week*. Three hours per week of creative writing (8 weeks) and two hours per week (2 weeks only) of drug origins. There are many great things about these courses, but the key points are 1- they are free, 2- I can do them in pyjamas, unwashed and unseen.

I was delighted to see that our bloggy buddy, Tinman, is doing the same writing course. I haven’t figured out how to do proper discussion on the  course site, and there seem to be hundreds of people doing the course, but it’s nice to know that a buddy is in there somewhere. Tinman shared part of this week’s writing task- I was going to, then I wasn’t. Then Janie was encouraging, so here we are. I want a bit of a kick start, a reminder of why I blog at all, and to get back into the habit of it, so I may as well post some of the inane ramblings that actually count as me writing.

The task was to write 2 paragraphs, one a fact and three fictions, the other containing 3 facts and one fiction.

She was born in May 1965, to a houseful of boys. John, Jim and Bob were her elder brothers- there were two years between each of them and four years between Bob and her. They all had blond hair and twinkly blue eyes. She was a screaming red head. In time, the way these things do, her screaming settled and the boys’ hair darkened.

When she was 8, she spent weeks in hospital. The boys gathered up cards and gifts from her classmates. There was a late night operation, a blood transfusion, a visit from the priest. Bob was glad she was away.

These may turn into something eventually, they may not. Bob may be worth exploring. What interested me was how interested I got in  two short paragraphs. I didn’t know what I was going to write until I started, and then my brain started to buzz.

Don’t you love the buzz?

Image

 

*Everyone I know is thinking that I’ve still got a lot to learn about managing my health, I need to pace myself more, I shouldn’t keep taking on too much and then crashing, and they’re right. I know that. I even agree. But then I get swept up in childish enthusiasm and think that all those sensible voices are BORING and that I have to still try and be myself somehow. A crash is always imminent so I want to make the most of the awake days. Yes, I am a nightmare to live with. But I’m ready for bed just after tea time most evenings.

sure, I’m grand

I took my tales of woe, my melodrama and my muddled head along to the GP.

I cried, and scared the student.

GP listened and nodded and asked. He let me burble and drip and snuffle. He handed me the whole box of tissues.

And then he told me I was normal. Oh, the relief! He highlighted all the positives. My ability to be engaged and enthused and interested (severely lacking at that point, but I’d mentioned being Tigger at the Summer School) told him all he needed to know about my underlying mood. Despite the messy make up, and anxiety at feeling so rubbish, I’m as healthy as ever.

from: http://grandgrand.bigcartel.com/
from: http://grandgrand.bigcartel.com/

The blip is just that. A dip. A reaction. Frustrating. it will happen.

It may happen more often if my energy doesn’t keep up with my ambition.

Watch out world for more grumbling.

Probably from all the folk in the GP waiting room- by the time I left, it was standing room only in there.

found at: http://ffffound.com/image/fda4117ee5b2d3eb19389d530d403d8c901d3021
found at: http://ffffound.com/image/fda4117ee5b2d3eb19389d530d403d8c901d3021

* for the overseas reader, ‘grand’, in Ireland, is generally used as ‘fine’, ‘ok’, ‘acceptable’, ‘nothing worth getting too excited about’ etc

who likes hard sums?

I used to quite like maths. There’s a logic to it. A process. It made sense.

Until it stopped making sense. When words and language inspired and motivated in a way that algebra and calculus couldn’t.

One of my ME symptoms is that numbers are just numbers now. I struggle with what they represent. I have been baffled by Primary school maths for some time now, but given enough time and an empty page, I can muddle through. Spurs Fan only has to glance at things for them to make sense; I’m starting from first principles all the time.

Girl1 has a decent grasp of maths. She’d never claim to like it, but she can work it out without too much difficulty.

Until this…

The class are baffled.

The exam is today.

algebra- simplify

We have years of this ahead of us.

We’re doomed, I tell you, doomed.