I’m tired

Tired of being mentally and physically exhausted.

Tired of seeing people I want to talk to, and not remembering what I want to talk to them about.

Tired of forgetting to order medication, and then not lifting the prescription because I couldn’t find a parking space I could confidently put a tiny car in.

Tired of having no confidence.

Tired of anxiety.

Tired of turning down opportunities to make a difference because I can’t do any more.

Tired of justifying what I do.

Tired of forgetting important things.

Tired of letting others down.

Tired of not being who I want to be.

Tired of being overwhelmed by simple stuff.

Tired of being demoralised.

Tired of being a sensitive little soul.

Sick & tired of being sick for 11 years.

 

 

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you know how this ends

I blame the machines.

The wristband wanted to record my weight and height. I guessed. All the weight lost some years ago has been refound (thanks to volunteering for taking my mental ‘point counting’ energy, and to Lidl’s baked goods and tasty, cheap, wine for taking my willpower). I added in the weight I was when I started Weight Watchers, sure I’d be there or thereabouts. Peak Speccy.

The wristband is mainly to keep tabs on my heart rate, but it counts steps, and I have a daily target. We all know that simply having a random target is a motivator. On a dry day, a wee walk may be considered before collapsing on the sofa with a box set. On a wet day, all bets are off. I’m not daft.

On Sunday, we took a wander to the local museum. We looked at old photographs, and an older Rembrandt.

Rembrandt

We wandered down an elderly, panelled, corridor, and gawped at the artwork from local schools- top scoring in exams artwork. Hard work, inspiration and talent. Go, young people.

It wasn’t a long visit, but it was challenging and thought provoking. I was buoyed and full of energy. Until I followed up on a plan. We’d be passing the sports centre on the way home, so why not call and pay a machine to tell me my height and weight?

Whoever thought that would be a good idea?

Peak Speccy has been surpassed.

There were no hoardes of people, but I was humiliated and horrified. I’d let my weight get away from me again. Equally, I felt ridiculous that I cared so much. I’ve been spending my limited energy doing things rather than recording every mouthful- surely that’s a good thing? But still. I’m too big. My default position is cuddly.

Instead of skipping home, inspired by history and art, I felt every step, and went straight to bed, my place of safety. I needed to lick my wounds, to recalibrate and recover.

Spit.

I’m off for a walk.

Apparently, I’m a dangerous, activist nutcase

I’m cuddly, not dangerous. I’ve never had cheekbones (a key sign of edginess) and I’ve never been anything other than a wee bit mouthy. The most dangerous thing I’ve done recently was leave the Christmas tree lights on by mistake when I went to the shop.

I’d love to be energetic enough to be active, but I do try. I take an interest in the world around me and try to make a difference. I miss loads, but have learned to focus. My brain can only cope with little bits. It’s important to me to do something, rather than dwell on how miserable I feel. I don’t regard ‘activist’ as a term of abuse. I’m proud of it.

On the other hand, ‘nutcase’.

I haven’t come up with a way to spin that one. It’s just not helpful. This Urban Dictionary definition made me laugh, but its not useful either: A term describing a person who has totally lost their grip on reality. Such people are mainly from the right wing of the political spectrum, and are often politicians and religious extremists.

A Cambridge dictionary definition is better: someone who ​behaves in an ​extremely ​silly way or an ​offensive ​term for someone who is ​mentally ​ill.

OK- we know I’m not right wing, a politician, nor particularly religious. Reality varies. I can certainly be silly. I take the anti mad tablets, and am glad of them. If anything, my family are even more glad.

I live with Myalgic Encephalomyelitis (ME). I woke up one morning feeling like my limbs were made of lead and that my brain had been replaced with cotton wool. Nine and a half years later, I’m not much different. I gave up work. I lost grip on a lot of what had been my everyday reality. My world has changed enormously due to ill health.

For reasons I never quite understand, ME is a hugely contentious illness. There is a strong psychological school who appear to argue that patients can think or exercise our way out of it, despite evidence that working beyond the limits defined by our illness makes us worse. Regular readers will know that I continue to boom and bust- to do too much when I can, because I can, and then be barely functional for a while, when having a shower is a major achievement.

But, let’s consider for a moment what would happen if ME were a seriously considered illness. We’d need clinicians, pathways of care, tailored medications and treatments, centres of expertise, patient centred care,  just like all patients.

um, there is that...
um, there is that…

We have none of that. In Northern Ireland, we have no treatment which even meets the criteria of the National Institute for Health & Care Excellence (NICE). Sadly, even Mark Baker, Director of Centre for Clinical Excellence at NICE, knows that their guidelines are inappropriate.

Professor Baker said:

He sympathised with the position we were in with the Guideline

The Guideline failed to address the real issues in ME/CFS

It does not promote innovation

It had a disappointing impact on specialist care and commissioning issues.

Our local commissioners aim to meet these these discredited guidelines (they have a long way to go) and have no intention of looking for alternatives. There is neither the mind set not the resources for anything innovative.

It should be no surprise that patients want better care. We want to get no worse, and ideally, get better. We want understanding and support. We want to understand our condition, and we want services that help rather than hinder our progress. We want discussions that reflect our reality.

Recently, there has been some critical examination of the PACE trial, a significant piece of work funded by the UK government. One would expect rigour and transparency in science, but that appears to not have been the case. There are requests for misleading claims to be withdrawn, and for the data to be made available for further examination. That’s not happening- details, discussion and interesting comments from non ME researchers here.

Arguments are being made that people who want strong, evidence based research are at fault for not accepting what they’re told. A prominent psychologist claims to feel safer in war zones than at home, where he’s ‘under threat’ from ME patients. I can’t speak for all of us, but all the ME patients I know are in bed, or wondering how to make a warm drink. We are brain fogged, in pain & can move no faster than a mobility scooter. One could get away from us easily, without the back up of the armed forces. Is it possible this guy has lost grip on reality? Or maybe not met many actual patients?

This morning on twitter, a psychologist referred to people querying the research as ‘dangerous, activist nutcases.’ A psychologist, mind. A mental health professional calling the curious ill ‘nutcases’.

The blood is up.

Stand by, the beast awakens.

But first, a rest.

 

 

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.