in which I am spoiled

There may be no way back. All those ‘perfectly good’, ‘quite nice’, ‘exactly what you need’ places are dead to me now. I’ve had a taste of the high life, and I’d like to become accustomed to it.

While it snowed outside we sat by roaring fires. When the sun came out we wondered at the beauty of the lough, yards from where we sat. The staff were knowledgeable and friendly and had nothing else they needed to be doing other than attending to our every whim.

The swimming pool smelled of aromatherapy, not chlorine. I never wanted to leave the spacious bedroom. I could talk at some length about the bathroom. I struggled to leave the bed, even more than I normally do. And it wasn’t just me- at breakfast all the conference crowd were agog at the pillows, the comfort and the scrambled eggs. Dear goodness, the bacon…

Ah yes, the reason for all this was our conference. The Lough Erne Resort Hotel had made us an offer we couldn’t refuse, and I’m so very glad. I had several reasons for staying over the night before, but I was too relaxed and cosy to remember that I was meant to be checking out the room and the AV and all the logistics.

The snow caused some chaos, but we got through. Local delegates got pounced on to read the message from the Health Minister or to fill in for a stranded speaker. There were many sofas for chatting and connecting and doing all the vital, informal stuff that makes events so valuable.

I have never been involved in a more relaxed event. I may still be mellow and chilled out.

Now I have to start saving up to go back.

what do I do?

This week, I’ve been recovering. Yesterday was one of those days where I got up in the late afternoon, had a long hot bath, put on fresh pjs, and took my hot water bottle to the sofa, before going to bed. Once upon a time, I’d have been upset by that. Now, it’s just one of those days. Not even a surprise, after some of the busyness.

I regularly post about the importance of support groups. Ditsy and I cause chaos across the six counties as we meet old friends and new friends in a space for PSP chat. Families, carers, people living with PSP, gathering to together to share and support. Hugs and tears are frequent but optional. It takes courage to come to a support group for the first time, to cross the threshold. To admit a need. To display vulnerability to strangers. The strength of a support group is that we all know. We have all been that bewildered. We have all been that anxious. We have learned the strength we can gather from each other. It’s not about the dismissive ‘tea and sympathy'; it’s about creating a welcoming, supportive, space.  A diagnosis of PSP is baffling. It’s a progressive, terminal, neurological condition that few have heard of. Finding someone else who’s familiar with it is like finding an oasis in a desert. A resource. A relief. At last. We are not alone in this.

 with Ditsy & MrD
with Ditsy & MrD

1 in 12 of the population is affected by a rare disease, and Northern Ireland Rare Disease Partnership work to influence strategy and policy in the UK and the particular implementation in NI. Last week, a crowd of us gathered to plot, plan and create. We have things to do- redesign our website, meet the NI Assembly Health Committee, participate in a Human Rights investigation, plan a big day out at the DisabilityPride event, keep on talking to commissioners, present at conferences, be creative about telling the stories. We are all volunteers. We’ve all had to learn something about rare disease. We have differing skills and experience; we work collaboratively. There’s always more to do. We do what we can. We’re doing more than I ever thought possible without significant funding or staff. Volunteering is amazing.

Also last week, I gave a talk to the Board of the local Public Health Agency. I talked a bit about PSP, a bit about the rare disease partnership, and quite a lot about the importance of working collaboratively with patients. Our Health and Social Care systems have a legal requirement to promote Personal and Public Involvement, but too often it’s seen as an add on or somebody else’s job. So I brought my thoughts and my shopping into a meeting of the big wigs. I didn’t show off my new shoes, but I got the impression they don’t get presented with Dr Seuss images all that often. That’s the value of a different perspective.


the lorax

Does it make a difference?

I think it does.  To an individual, to isolated communities, to people who recognise that their voice can have an impact, to senior managers to remember that they’re talking about people, not just numbers or conditions.

It makes a difference to me. I have a reason to get out of bed. I have people to talk to. I have support and opinions and I can make the big wigs listen to me. (Pause for a moment to feel for the big wigs.)

I have a chronic illness. I lose days to sleep and vagueness. But the little bit I can do reminds me of the mouthy busy bod I used to be, and that’s quite fun. I’m me, not ME.

joining together for better care

28 Feb is international Rare Disease Day, with the theme Joining Together for Better Care.

That’s how our charity works- there’s no point jumping up and down on our own. We need to make connections between families,  clinicians, researchers, commissioners and policy makers. Across administrative systems, regional boundaries,  and international borders.

We’re holding an All Ireland event on 28 Feb, looking at next steps in local and cross border care for rare disease, and showcasing examples of good practice- patients, families and health care providers. Why not join us on the day?

(You may imagine I’m spending these days sleeping or panicking at the busyness.)

We are stronger together.

on wallowing, wishing and writing

Just as there’s a fine line between ‘pacing’ and ‘doing too much’, there’s a very fine line between ‘resting’, ‘taking care’ and ‘wallowing’, being stuck in the ‘pity party’. I’m not so good at resting and I’m so keen to stay away from the pity party that I do too much. Then I get worn down, exhausted and have a good wallow. That leads to me doing too much to get out of that funk…

I did step back a bit from the volunteering, but it’s a very busy time, so I’m not totally retired. I’m exhausted, but not sorry. I’m still contributing! I can wash my hair and leave the house! Spurs Fan is not so impressed- I needed a 3 hour afternoon sleep after one meeting- but he is the Leader of Silly Amounts of Work, so can’t say too much.

I do get frustrated at not being able to do more, but I’ve accepted that I can’t do what I’d like, and wishing won’t make it so. In the meantime, I enjoy the girls’ reactions when I remember something, or have a bright idea. I get great encouragement for the teeniest things. The wee souls are generally very supportive.

Generally, I say.

For my writing class, I had to hand in a portfolio- in my case, a few fictional scenes, threads of a story. I burble away here, but fiction is new to me. I’m writing moments rather than plot lines. I’m practising. At the last class, the assignments were returned. I hadn’t expected them to be graded, so I was very impressed with myself. The grade was like the Irish dancing turning up medals- simply for encouragement- I was pleased and encouraged. I waved the bit of paper at Girl2.

“Look at the mark I got for my homework”, I said, proudly displaying a mark that would have earned her a take away pizza in the prep stages for the horrible transfer procedure.

“Is that the best you could do?”

Cheeky bism. I scoured my mind for when I may have greeted her turning up medals with disdain, but I’m so encouraging it’s sickening. She may have seen through me.

(My classmate and bloggy buddy, Emma, has posted her homework. You will enjoy it.)

found at:
found at:

Between the resting and the wallowing, I haven’t been writing. I’ve been keeping myself away from the computer in case I do work, but I need to just make myself write. I need the habit. But I have been reading, and I can’t complain about that. I’ve read two books of a crime series set in contemporary Belfast and am part way through the third. Police procedurals with effective team work, characters to care for, plots that capture the imagination and (so far) murderers that I want to hug. Most unexpected, and a worthwhile use of limited energy.

My mind has decided to express its creativity in dreams. I’ve been on the Jersey shore, discovering history where the boardwalk used to be. There have been journeys where I’ve had no control, and last night, well. I’ve been laughing all morning. I had parked the car, badly, indoors. While Spurs Fan was refereeing a soccer match, passing strangers had to take the car apart and reassemble it (dog basket, lipstick and deck chair included) outside for us to be able to get home. My mind is a mysterious place.