and there’s more (melodrama #2)

I’ve never been accused of being adventurous. Edinburgh isn’t far away. We speak the same language, we use the same money. The Brother lives down the road. I’d won a scholarship to attend the conference.

These are the reasons I stayed when all I wanted to do was get the bus from outside the hotel door to the airport and come home to hide, defeated by the outside world.

I’d just about coped with the drama of getting lost and hunting out essential tablets.

I coped with rain so heavy it seemed an Ark may be imminent. I was drenched. My conference papers were soaked. A raincoat with a hood wasn’t up to the task. I bought an umbrella. I’m not easily beaten.

I coped (no bother at all) with 2 nights in a budget hotel by the train station, all on my own. I had no issues with a view over the city, a huge bed to myself, copious amounts of breakfast pastry, and a fabulous shower.

But still.

I thought it was the fault of the rain. I’d walked back from the conference via the pharmacy. As a result, everything was soggy. Everything in the cloth bag, everything in the handbag, everything under the coat.

My phone just needed a little recovery time.

That seemed to do it. Until it stopped altogether.

And I could do nothing. I was in a different city, unable to access phone numbers or the internet. Even if I found a phone box, I have no idea what the Brother’s number is. The bus to the airport was very tempting.

But that would be defeat and I wasn’t letting my not adventurous at all adventure defeat me. And anyway, if I ran away, I’d miss out on time with the Brother, Arty Lady and the Not So Little People. That was what was keeping me sane.

If only I could work out how to let them know when to collect me from the station…

I woke early in the morning, convinced someone had spoken to me. Odd. A few minutes later, a train grumbled or squealed or moved.

And Siri responded.

My phone had taken to responding to the trains, but not to me. What sort of surreal farce had I wandered into? I was having a hugely stressful 24 hours, and I couldn’t begin to work out how to resolve it.

It was 5 am. It took me a while to work out that Siri might in fact respond to me speaking if it were answering the traffic sounds.

Eventually I could send messages. I had contact with the world. I promised Arty Lady I’d send a pigeon when I got on the train.

They took pity on me. The Brother came to get me, to leave me off the next day and collect me again.

They’d figured I couldn’t be left on my own. I didn’t get lost, or soaked, again and my phone dried out eventually.

I didn’t have to ask Siri about phone repair places after all.

 

another fine mess I’ve got me into

I should be excited, motivated and raring to go. There are new opportunities. But right now, those opportunities feel like a box being ticked on an action plan somewhere. The ‘get a patient voice’ box. Once the box is ticked and the seemingly amenable middle aged smiley woman is at the table, where is the push to keep engaging with patients?

Patients, families and carers are living with poor health every day. We are the people struggling to manage our energy, our medications, or all the appointments. Being ill is a full time job, with no reward, that none of us have chosen. Our physical and mental wellbeing is compromised, and we do battle with the outside world. We need help and support, we need to be listened to, and believed.

And we have to claim social security ‘benefits’. There are no actual benefits to this process, simply paralysing. anxiety and worsening of conditions. There is no ‘safety net’. Never fall ill. Never have an accident. Never get old.

Neil Kinnock, Leader of the Labour Party, 1983
Neil Kinnock, Leader of the Labour Party, 1983

Yet here we are, the ordinary, the young, the ill, the aging, the parents, the worn down by circumstances beyond our control. We’re the ones pushing to be included in decisions about our health and social care.

How naïve am I to think that there’s something wrong with this picture?

The patient voice in NI is weak. Personal and Public Involvement (PPI) improves services. But still, somehow, we with our questions and our messy lives and wide variety of experiences, are often viewed as ‘troublesome’, ‘too personal’, ‘difficult to work with’. Despite policies and strategies and focus groups and for a, PPI is going nowhere quickly.

While the system is slow, there are people within it who know the way forward. They can see the value of patient voices, but hardly know how to get some voices involved. These are the individuals who identify opportunities to involve patients, families and carers in policy making. I have chances to participate.

Why do I feel bad about that? It seems it’s ok for me to talk about the need to have patients involved in decision making at all levels in health and social care, but when I get the chance to do just that I’m freaking out.

I’m afraid of being a token. I’m afraid I’m the wrong person. It’s not meant to be about me, but I can’t not do it. I’m afraid of letting ‘patients’ down. What if I mess up? What if I go native? What if I’m being given enough rope to put patient voices out of action totally?

I know how this guy feels…

The Leader

I wanna be the leader
I wanna be the leader
Can I be the leader?
Can I? I can?
Promise? Promise?
Yippee I’m the leader
I’m the leader

OK what shall we do?

I’m not a leader: my only followers are on twitter and a handful of bloggy buddies. I’m not usually a ‘rep’. I’m just a mouth who’s trying to take all the chances to make a difference that I can, without knocking myself out totally.

Deep breaths, chaps.

rocket ship

a trivial tale

a non story

nothing to report

“You do not have…”

 

The world is full of inequality and woe. There is always something to be annoyed about or confused by. There is always something more to be done to make things better. Most of us can’t change the world, but we do what we can to improve our wee bit. Every so often we get a phone call that changes our perspective. That could be a “Come now” or something less urgent, but unsettling.

About 18 months ago I got a call from a cousin of The Old Man, someone I may have met when I was a child. She wondered what I knew about the health of  the family, who had died of what. She was piecing the jigsaw together as part of a research project- gathering the information for the Big Hospital, because of her own illness. Some while later Uncle Bungle phoned- not a speculative call, this one. It had weight.

the family hair options are white or bald...
the family hair options are white or bald…

We all got a letter from the Big Hospital, with a reference number to our family history. The message was ‘Go, get tested.’ I wondered about doing the full Angelina. If I had reconstructive surgery, would I still need scaffolding type bras? But… surgery is not to be undertaken lightly. What would I do?

In a miracle of denial, I decided not to investigate or consider further until I had something to go on. I occasionally wondered about pain and hospital and my wee pets. What if they had to deal with my surgery and realise that they could be at risk too. Would they be haunted for years? Maybe I wouldn’t choose surgery, but would I always be anxious, hyper alert?

The genetic counsellor gave me details of a website. Remarkably, I didn’t look at it. We had Christmas to do, and hefty rare disease work. Also, brain fog. I hadn’t the energy to investigate. What would my energy be like if I had treatment? Surely ME brain fog combined with chemo brain would render me totally useless? (Note the way my mind moved from preventative surgery to chemotherapy without pause. There’s nothing rational going on in there.)

This morning I got the result. I do not have the mutation that some of the McSpecs have. I am at no more risk than the general population. I did a little dance. My eyes dripped a little.

I didn’t quite realise the weight of the possibility I was ignoring until it was lifted a few hours ago. I’ll die of something sometime, but not this thing just yet.

I don’t need to buy hospital nightwear.

I don’t need to tell my daughters horrible news.

I won’t end up with Brad Pitt.

It’s a non news day, and I am delighted.

every day is a school day

Some weeks ago I, along with other volunteers, gave a presentation to the Northern Ireland Human Rights Commission Inquiry into emergency care.  My recollections of the event were dominated by my being anxious and hardly drawing breath.

Today the video was made available. It was a legal thing; our input a matter of public record.

 

Key learning point 1: stick to the script.

1a: this will resolve the on/off/on/off nature of the reading glasses.

1b: this will give other people a chance to speak.

1c: this will preclude any notion that inventing a random character and giving her a pet is a useful idea.

 

Key learning point 2: go back to Weightwatchers.

2a: this may have an impact on the developing jowls.

2b: this may mean that clothes fit.

 

Key learning point 3: nothing is ever as bad as I fear.

3a: about time I realised this.