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.)
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.
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.
Many moons ago, I was gainfully employed. I had an office to be found in, staff to support, clients to visit and a lot of driving to do. I was organised and cleared my desk. Gradually, the desk stuff expanded. I was spending Saturday afternoons in work just to try and keep on top of the paperwork. I was writing reports into the night. There were stacks of papers beside, behind and all around me. A blind man on a dark night could have seen what was happening, but I missed it. I was overwhelmed. I kept on going. I didn’t have time to take leave I’d booked. I got sick. I kept on going. Eventually my body decided that drastic action was required, and it ground to a halt. I woke up one day feeling like I’d been run over by a bus, and my brain replaced with cotton wool.
Years later, I’m still missing signs. After Herself died I finally went to Weight Watchers. My mind wasn’t totally occupied with her health. I had a bit of space to manage my own health. I lost about 3 stone, and I was a happy bunny.
I paced myself. I didn’t do all the things I wanted to do, but I threw myself at things with enthusiasm. I began to notice that it was taking me even longer than normal to do things, and that I was worrying away about everything. I didn’t notice that I was gaining weight again. I knew it, but it didn’t strike me as significant. The pounds added up, and now I have to pay Weight Watchers again. I have put on about 10lb. Bad words. But why? How has that happened?
I haven’t been paying attention. I’ve been overwhelmed. It’s possible to be doing too much, even when I’m only doing a fraction of what I want to. I’m like a phone that needs charging for ages before it even has the energy to show the warning red sign. I’m taking a break. Gardening leave, without the gardening. Volunteer retirement, if you will. Yes, of course, there are bits I have to finish up and things I still want to be involved in, but I’m taking a huge (hopefully temporary) step back.
Blogging has been sporadic for the last few months, and will stay that way. I may cobble together an assignment for my writing class (I’ve missed the last two; one because of the Dublin trip and one because of sleeping), then again I may not. I may spend the next month lying on the sofa watching box sets of great dramas or working my way through what’s been recorded. I have no expectations.
The volunteering and the writing class aren’t the sole causes of my brain being full, but they’re the things I can manage. Little steps.
It may simply be that I should never leave the house. Jake and I can muddle along here, quite contentedly, with our long sleeps and short walks. A few phone calls, maybe an email or two- safe, uncomplicated volunteering.
The morning had gone well. A perfectly acceptable bus journey, a positive meeting, a yummy lunch, a warm glow.
The bus for the return journey was crowded and cramped, but we were well fed and happy, We missed the warnings that the day was about to go downhill.
A phone call meant that one of us went into Fix the World mode. She was busy. Another of us planned a pampering night out. The third twisted and turned and counted down the minutes until she could sleep in front of the fire (guess who?)
The morning bus hadn’t stopped along the route-we were none too impressed to discover that the afternoon bus had scheduled stops. The time until home stretched.
Why are we heading back towards Dublin? Would it not have been easier to head to Belfast? Odd, but OK.
My painkillers were having no effect. My head was pounding. I was sore. It got very warm. Clammy, even.
The bus stopped (is that even a bus stop?) to let people off and I made a charge for the fresh air. It was not enough.
Tea time traffic in Banbridge ground to a halt as the badly parked bus waited on me to finish. Seasons probably changed in the time it took my stomach to empty. And then I had to gather my dignity about me, wipe away any dribbles, and get back on the bus. Thankfully, Auntie Sadie had sweets.
The pampering night out began to recede from possibility, but at least we were on our way. Hurrah.
We sailed past the big shopping centre and on to the motorway, causing some consternation to fellow passengers who’d planned on getting off there. There were terse phone calls to irate spouses. A few minutes later, we came off the motorway again. Are we going into Lisburn instead?
No. No… oh. Why are we going up this road? We don’t want to go to Saintfield.
A big bus. A narrow road. Lots of traffic (who did want to go towards Saintfield). The bus turned round. Slowly, with plenty of stooping and starting. We went back to the shopping centre, dropped off a few people and headed back towards Belfast.
We did wonder where we’d end up, especially when we went past the entrance to the bus depot.
We took the long way round, but got where we needed to be, a long hour after we’d hoped. Phew. Thank goodness it’s all over. Home called to us all.
Chairperson was bringing me home. We were too exhausted to be giddy with relief. All we had to do was pay for the parking and head off.
Chairperson is lucky to have survived. As she pottered away from the pay station, a car roared into the carpark. A blink of an eye lay between her being shaken, and her heading over the bonnet.
Lying down in a darkened room beckoned.
Our bus driver didn’t have a uniform- never get on the bus if the driver doesn’t wear a uniform. Too much adventure.