what February is all about

Well, my February that is. I assume you may have other priorities, but round these parts February is traditionally the month of panic.

29 Feb, itself a rare day, is international Rare Disease Day. This year our charity is having two events that day- a conference during the day and a political reception from 5-7pm in Parliament Buildings. If you’d like to join us for either our both of these, you can register through the links on our website.

Events mean lists (speakers, contact details, exhibitors) and many questions (where are the lanyards? special diets? did anybody find a template for…?). I visited the venue last week and realised that they remembered our last event there well, because we’d had too many folk turn up determined to display their info and leaflets, and all the tables in the place got commandeered. Pinched from the lounge area, and rooms we hadn’t booked. We both learned – they bought more tables, and we agreed a maximum number. Potential exhibitors will have to book a place and we need to be prepared to be ‘bad cops’ on the day. I wonder could I get somebody else to do that? Would you like to do it?

The morning session will showcase examples of how patients and families influence work in the rare disease world, using the charity’s themes of educating, advocating and innovating. The afternoon session is about problem solving- how can we be creative and actually move things forward? We hope to be discussing a prototype information hub, but we don’t have long left to have the hack day to develop that. Aargh! Someone else is panicking about that. I get tables and car parking and programmes and presentations. Another gets to worry about the big wigs and political shenanigans.

Everybody has something to be anxious about, and we muddle through. There may be bad words under my breath, or spoken loudly for only Jake to hear. There, undoubtedly, will be some chaos and a last minute dramatic near disaster.

But none of that matters. We will be gathering together, those of us who used to be isolated and alone. There will be hugs and giggles and time spent with people who understand. We’ll be talking with those who help us make progress, for everyone affected by rare disease in the region. By gathering together, we will remind ourselves and that we are not alone, that we have much to learn from each other, and that we are #StrongerTogether

Rare Disease Day events are to celebrate, and to raise awareness amongst those who do not live in our world. We will have cake.

vic sponge

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.


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.


I’m off for a walk.

a cunning plan

I sleep and lie about. Some days I get dressed. I’m sore and exhausted. My brain works intermittently at best. I worry about doing too much so I do nothing. Then, I do too much. I really am not good at this pacing thing. There are events to plan, meetings to go to, a new network to embrace. All the fun things.

For the last few years there has been a fair bit of talk in the ME world about heart rate monitoring. Some people benefit greatly from attempting to keep their heart rate below a certain level- stopping the boom before it happens, thereby preventing the bust.

That’s always seemed complicated, and a little beyond my comprehension. But recently I’ve begun to wonder. Sally, a local ME blogger and activist, is a natural teacher. She explains things in a way that make sense to those of us with cognitive issues. And she’s been monitoring her heart rate for some time.

At Christmas time, Spurs Fan came into a Fitbit, a wee strappy gadget for his wrist that monitors steps, sleep and much more. He loves it. It’s easy to use. It’s unobtrusive and convenient.

I don’t need all that technology.

I pondered, read Sally’s heart rate post again, and searched for heart rate monitors. They’re mostly expensive, ugly things. (Other opinions are available.) Really, I just wanted something like the Fitbit, but with a heart rate display. And, lo! Such a thing exists. It’s designed for active people, and gym use, but it displays heart rate and sends all the info to the phone for review. Of course, it also does steps, calories, sleep and other things I may never use. I’m hoping I can learn to up my physical activity safely, and to cease and desist in a timely manner. The device is hardly lovely, but was cheaper and less bulky than alternatives. (I could have paid a lot extra for a different colour.)

admittedly, not stylish
admittedly, not stylish
My numbers
Maximum heart rate: 220-50= 170
Safe limit for ME people, 60% of max: 170 x 0.6= 102


The fancy tech is charging now. Soon I will be knowledgeable and able to discuss numbers with the best of you. I’m going to do it properly this time.

Until I don’t.


ravens, dragons, and eyebrows

I have been preoccupied of late. Spurs Fan and I have finally succumbed to Game of Thrones, theTV series based on George R R Martin’s fictional series A Song of Ice and Fire.

‘Epic fantasy’ is not really my thing, but everybody was raving about it. Numbers of people were genuinely surprised that we weren’t watching. We began to wonder if we were missing something other than violence, weirdness and misogyny.


We’ve spent the last few weeks engrossed in politics, death and drama. Family histories, ancient ties of loyalty, slights and snubs, good hearted Starks and nasty Lannisters, the wit and unexpected warmth of Tyrion and Jaime, the coldness of Stannis, the horror of torture. Dragons. Characters to care about. Characters with similar sounding names- Bran can’t walk but communes with trees and dreams of 3 eyed ravens, Bronn the mercenary, Brianne the female warrior somehow devoted to Renly, Catelyn and Jaime.

I’m not sure I could have kept up so long without the smartphone for the many ‘Who?’ ‘What just happened?’ moments. While I’ve been spotting all the local actors, Spurs Fan has a particular interest in Daenerys Stormborn of the House Targaryen, the First of Her Name, the Unburnt, Queen of Meereen, Queen of the Andals and the Rhoynar and the First Men, Khaleesi of the Great Grass Sea, Breaker of Chains, and Mother of Dragons. At the point we’ve reached, she’s discovered that ruling presents different challenges to conquering, and that dragons can’t be tamed.

mother of dragons

I’ve been less comfortable with the characters north of the wall- white walkers, underground zombies, and giants riding mammoths. Is that the sound of a shark being jumped, or is my imagination just too limited?

The women are interesting; political and fierce, never naïve for long, yet often still subject to the whims of men. They get grubby, menstruate, have thick eyebrows and can run when they need to. These fantasy women are not glossy.

Another political drama I’ve been catching up on is Scandal. Powerful women who are glossy and groomed, with pearls and high heels. The clothing of the main character reflects her behaviour- lots of cream, white and beige, but greys and blacks when her actions are a little murkier. It’s based in Washington DC, often in the White House. These are powerful women, without formal political roles. Not so different, then. No zombies, yet.

When my brain has recovered, I’ll catch up with real life. Bear with me.