All posts by speccy

all conquering

Bloggy buddies, you were right. The red and sparkly nail varnish kept reminding me that I could do it. I could deal with airports and trains and taxis and people. I could find my way from one spot to another. I could talk to people. The anti mad tablets worked their wonders, and my nails kept reminding me I was brilliant, a bit like the ‘Yes, you can’ I’d drawn on all the mirrors when Girl2 was anxious about school transfer procedures.

I’monlyslightly and I were presenting at a conference Future of Health, which had a focus on long term conditions. A key feature of this event was the role played by patients. Patients presented at most seminars, had priority in asking questions, and had a room set aside for us with sofas, tables and chairs, flip charts for recording impressions, twitter names and taxi requests. Patients weren’t just allowed or encouraged to attend; we were actively facilitated. I know the overall feedback will include gripes and grumbles, but it was a positive inclusion, something to be developed and rolled out to other settings. I really enjoyed the welcoming atmosphere and the opportunity to meet twitter patient buddies. I was hugging folk from the sheer joy of connecting in person. I was a little awestruck too- these folk are hugely impressive, and they were chatting to me! They knew me! (preen feathers, flash sparkly nails)

However, I’m not sure what the health professionals got from the event. In terms of patient participation, there was a sense of preaching to the converted. The head of NHS England, Simon Stevens spoke, reminding me of Nigel Millar from Canterbury, New Zealand, talking of the need to change the health care paradigm, or else build another 20 acute hospitals, that they wouldn’t then have the resources to staff, equip or maintain. In this aspect, the small size of his district was an advantage that NHS England doesn’t have. I don’t know whether it was by virtue of his position, his previous decision making, or his personality, but Stevens appeared to make the whole room bristle while saying nothing very controversial at all. Any chance he had was lost when he failed to answer a questions from  a patient, responding with ‘Well, what would you do?’

Our seminar was on the theme of health inequalities. Predictably, we spoke about rare disease, and the power of working together. Less predictably, we kept to our allocated time. The other speakers, from NHS, proceeded to fill the rest of the seminar time, talking about their projects, not being clear on how these addressed inequality, and leaving no time for questions.

The reality of living with long term conditions was very stark for us. Imonlyslightly experienced a flare up of symptoms leaving her in such pain that she could hardly move or think or speak.  I suggested that she return to the hotel  and hide in bed, but MsDetermined was having none of that. Somebody was paying her costs for being there, the least she could do was give her presentation, share her experience, answer the questions. The questions that nobody got a chance to ask, because the other speakers ran over time. Flights, trains and accommodation were paid for, but still, her time, effort and health were not valued appropriately. She was struggling and suffering, and for what?

(And all this while another ‘patient’ speaker was discussing how she wasn’t a patient at all any longer, she’s a professional. I am challenged by this, thinking that that if she’s now a professional rather than a patient, what’s she doing on the comfy seat? Shouldn’t she be encouraging others to step up, take the chances she had when she was a patient? I don’t know the woman or her circumstances, but her comment jarred.)

Ben Goldacre spoke at the end of the conference. Read his books. Go and see him if you can. He gets more words into a minute than anyone else I’ve ever seen, but he talks a lot of sense.

not quite there yet
not quite there yet

Like the middle aged wrecks that we are, we ate at the hotel and retired early. I’d wondered about some Saturday morning culture, but opted for a lie in and leisurely breakfast instead. And we each wondered where we were going to get a wheelchair from, and how we’d manage the notoriously disability unfriendly London Underground. We took little steps, kind people lifted a bag down stairs for us and we got where we needed to be.

Surviving the few days away without anxiety meltdown or cognitive collapse was a huge achievement. We are, in fact, #strongertogether.

the day before the adventure starts

I’ve done the practical things- stocked up on anti mad tablets, booked flights and the hotel, bought travel size shampoo, measured the case to be sure it fits the hand luggage rules.

I’ve done the ‘not so practical but it’ll make me feel better’ things- got my nails done and bought proper foundation, approximating to my skin tone.

I written the talk and prepped slides. I’ve timed myself. In truth I’m not so worried yet about talking- that will start when I get to the huge venue and see other people talking in a slick, relaxed, we do this all the time fashion. They won’t have a panicked ‘just pretend I’m reading at Mass’ face on. They’ll be chatting.

Before I get to then I have other things to worry about. The plane. The tube. Crowds. That there London, without Spurs Fan to steer me. I’m a grown up; I know I can do this. Years ago I’d hardly have given it a thought, but that was before. Before I knew about exhaustion and anxiety and needing a dog to get me out of the house.

red sparkly nail varnish

 

And while I’m worrying away about my wee thing, our mate and fellow volunteer Awesome Academic is worrying about hers. Normally unflappable, Awesome Academic will be recording a broadcast for Nature- discussing her work on genetics or kidneys or whatever branch of awesomeness she feels like discussing,  and then answering questions. Live. She doesn’t need sparkly nails,  but there is definitely some flapping going on. We all have our challenges.

I’m getting over my ‘I don’t want to go. Don’t make me go. Why did I apply to go? Do I have to go?’ phase. This time tomorrow I hope I’ll be bouncy and brave and full of adventure. I’d be kicking myself if I hadn’t applied. I’d be devastated if I hadn’t been accepted. There are so many folk I want to meet and learn from. I want to be inspired and energised. I want to make a difference. So I will go and chat and learn and present  and enjoy. And when I come home, I will recover.

And then I’ll do it all again, in another time and another place. With different nail varnish. I think the red is too bright. I have to live up to it.

#expressyourselfie

Social media have transformed aspects of charity fundraising. We all know about no make up selfies and the ice bucket challenge. All over the place, charities are hoping to benefit from a viral craze in their favour, if only they knew how to make it happen.

Herself had the rare neurological condition Progressive Supranuclear Palsy. (‘Progressive’= it’s only going to get worse. Shit happens. Tough. ‘Supranuclear’= it’s the messages from the brain not getting through to the bits of the body that move, see, cough, communicate, balance. ‘Palsy’= paralysis. Overall, a progressive paralysis that we can’t do anything about. See you in a year. Bye. ) As muscles stop moving, faces lose their expression, another form of communication is lost.

herself

 

Herself died 3 weeks after this photo was taken. This was a huge effort- sitting up and dressed, ready to greet the family, to be entertained by tales of school  and impressed by new Irish dancing steps.  Her face, like the rest of her body, wasn’t doing what she wanted it to.

But my face moves. I can do all sorts of silly things with it ( except get rid of that extra chin, the pointy nose and the wrinkles). Most of us are blessed with the ability to express our emotions on our faces. We can also exaggerate, be dramatic, laugh and just have fun with those faces. Girl1 and Girl2 spend a ridiculous amount of time posing for selfies.

The PSP Association want to capture all these things in the #PSPAExpressionSelfie.

I think we can do that

 

Go grab your camera/ phone, be silly and have some fun. Appreciate the little things you can do.

Share your pictures, make all your friends and family giggle, react and post their pictures. Have fun!

 

 

To donate to the PSP Association, please text PSPA02 along with the amount you wish to donate to 70070 (PSPA02 followed by a gap followed by the amount eg. PSPA02 £2 to 70070).

#PSPAExpressionSelfie Working for a World Free of PSP & CBD – The terminal degenerative brain disease.

a sense of enormous well being

I spend most of my time at home, resting. I have plans that I can’t quite follow through on. I don’t have to do a lot to feel very busy & the littlest things wear me out.

So I take great joy from the odd time I can feel like a normal person, when a plan comes together, when I can just go and do.

I wasn’t looking forward to the day out. It had involved organising and gathering  and missed deliveries. There was a handover in a wet car park at night, while Girl1 danced a jig inside. The weather was horrible, the drive would be long. Getting there and being sociable would be challenging enough, but then I’d have to drive home again.

Imagine Spurs Fan’s surprise when I floated into the house after the return trip. Delayed by road works and heavy traffic, I’d missed being able to lift Girl2. They were expecting grumpy-don’t-speak-to-me Speccy, but I was bouncy and buoyed. Nothing like a bit of unpredictability to keep my loved ones guessing.

It had been a fine, bright day. The journey west contrasted sharply with the last time I’d made it on my own, in the middle of the night, willing my mother not to f****** die until I got there. (Unusually biddable, Herself stayed with us another 10 days, giving us all time to get there, to be with her and enjoy each other’s company.) Yesterday I could see for miles, the trees still had some beauty, and my heart lifted as I saw the town from the top of a hill.

I spent some time with HH, dropping off the t shirts, the big bucket, leaflets, a pull up banner and the freshly stickered brand new collection tubs. Tonight, she is celebrating, and taking donations for NIRDP. Isn’t that a wonderful, generous thing to do? We only know each other through social media, we share stories of dodgy health, much missed mothers and supportive families, and she thought of sharing her event with our charity. Properly awesome.

collection boxes

I stayed chatting longer than I’d intended, and probably longer than was good for either of us, and I went exploring the new road. All sorts of major archaeological discoveries were unearthed by the road building, but I saw the mundane roundabouts, cut aways and bridges- and look, our house! Reader, I went home.

I drove up the hill and paused outside where we’d all lived for years. Where The Old Man and Herself were so very happy and where the Brother, Mutt and I grew up. I had a wee moment of ‘ahhh’, and then- yes, there’s even more normality-I called in to visit a neighbour. More chatting and catching up, many smiles and surprises, more loss.

The journey home wasn’t so fine. Long delays and random road works. My happy cosy adrenaline buzz kept me going.

 

Today is another story. It’s 3pm and I’ve just been able to get up. It may not last. It could be days before I leave the house again.

It was well worth it.