Saturday, 22 April 2017

Pitched

Today was one of those community days.

I don’t mean I had to don an orange jumpsuit and paint over graffiti - that’s every other Sunday, and I still insist I was provoked, officer.

No, it was one of those days spent with other members of the PWS community. This PWSA UK (Prader-Willi Syndrome Association UK) family day was at Thetford Forest, and proved as much of a grin-generator as previous events we’ve attended. And, as you may know, we’ve attended a lot. Once my daughter has got wind of a Prader-Willi meet-up - no matter whether the location is The New Forest, Manchester, London or The Lake District - I have to have a cast iron excuse not to take her. By cast iron, I mean basically a death in the family. Hell, no, immediate family.

So we punched in the postcode in the sat nav, entered into the usual Brexit-complication-level negotiations over song choices on the stereo along the way, arrived, parked up, disembarked, registered, and got our name stickers. (Incidentally, I’m thinking of standing as an independent candidate in the forthcoming General Election on the single issue of it being compulsory for everyone, everywhere, at all times, to wear a name sticker. I’ve essentially got to that age where my brain just has no more face-name neurotransmitters left. I've pondered over the cause of their destruction, and I've narrowed it down to over-consumption of gin). 

We spotted a few old friends from previous events, and made a few new ones. There was, as always, a mix of tiny babies (with parents with a tell-tale, slightly shell-shocked demeanour), wobbly toddlers, cute children, my own diminutive teenager, and a lovely 21-year-old chap with a charming heavy facepaint/light beard combo, who introduced himself to everyone at least twice, and was utterly thrilled as this was the first time he’d met more than one person with Prader-Willi ‘like him’.

My girl was adored at by adoring Polly, who has a strong track record of previous adoration. They wandered around hand in hand, stopping off for my daughter to throw a little adoration of her own at Polly’s new baby brother (see picture). And my PWS girl - you know, the one with the insatiable appetite - insisted on not starting her picnic like everyone else until Polly had finished having her face painted and could sit next to her.

My boy behaved impeccably (by his standards), which meant he only burst half a dozen balloons, which wouldn’t have been so bad if they hadn’t sounded for some reason as though they were filled with gunpowder as well as helium. (Actually, in all seriousness, he was remarkable, playing a mini football match with a PWS boy, which awakened in him hitherto dormant traits of patience and magnaminity. Unlike when I play him, and he rugby tackles me, feigns injury, and bursts into tears if he doesn't beat me by ten goals).

It was a sun-kissed day, and a meeting of families who are all on the PWS map. We may camp out most days in very different topographic areas, from the beginners field to the SAGA cruise ship harbour, but today we pitched up together. And it was pitch perfect.

Song is: Yeah Yeah Yeahs - Maps

Monday, 6 February 2017

Pithy

I wish they could meet in the middle.

At one end of the dining table, I’ve got an 18-year-old girl who savours every last morsel of food. The obsessive hunger that comes with Prader-Willi Syndrome means that she eats everything on her plate, down to the very last grain of rice.

At the other end, I’ve got an eight-year-old boy who doesn’t want anything much apart from plain pasta. Any attempts to shovel other valuable nutrients into him require bilateral negotiations that make Brexit look like something I could wrap up easily in an afternoon, and still have time for several cups of tea and a haircut.

Earlier today, I was telling my nephew and his girlfriend about my boy’s culinary stubbornness. At least I was, until the fussy eater butted in with a scene-stealing interjection.

It was pithy.

“Don’t judge me.”

Cocky little git.

Song is Deerhunter - Back To The Middle

Friday, 27 January 2017

Extraction

Yesterday was a day where my daughter conformed to a great load of PWS clich├ęs, and defied a whole lot more.

We’d been at the hospital from morning long into the evening, on account of her having an operation to have all four of her wisdom teeth removed.

She was allowed breakfast, but no food after 7.30am. 

I’ll just give any Prader-Willi Syndrome parents reading this a couple of moments, as there’s a high liklihood they’ve just fainted with horror...
-
-
...There you go, pick yourself up and sit back down, breathing deeply, you’ll be fine.

To be fair, my girl was remarkably good about the lack of food. She did talk about it pretty much constantly, and checked with me numerous times what soft, liquidy snacks I’d stowed in a packed lunch box to give her when she came round after the op.

We recognised the dental surgeon who spoke to us about the operation he was about to carry out. “Where do I remember you from?” he asked, and then we all twigged that he was the same fellow we’d seen when we were referred to have her teeth out in his dental practice, and who had unwittingly instigated the mother of all meltdowns from my girl when he decided that the procedure instead needed to be carried out at hospital. (I wrote about it here, along with a random sheep and genitals-related anecdote. Don’t ask).

But yesterday, my daughter was pleased to see him, and was keeping a lid on her anxiety. The lid did start rattling alarmingly when the anaesthetist was having trouble finding a vein for the cannula, and mentioned ‘maybe needing to use gas’. One look at her horrified face (you can stick needles in her all day, but a hint of a mask gets her all wibbly wobbly), coupled with me aiming my special Laser Focused Red Alert Warning Raised Eyebrow straight at him, and he reconsidered. The cannula went in on the second attempt, the drugs went in, and she sank into unconsciousness. I told my eyebrow to stand down. 

The op went smoothly. 

My girl was in recovery for quite some time, as there was a bit of a logjam of patients and not enough beds on the female ward. I’d already read a couple of hundred pages of a book, and chatted with a couple of fellow waiting room attendees, one of whom amazingly turned out to know TWO children with Prader-Willi Syndrome. My girl told me later she’d been a little bit upset in recovery and had wanted her mum, but she hadn’t cried “much”. I wondered about this uncharacteristically touching affection towards me, but understood more fully when she mentioned the man had told her to “listen” and that she “really must stop taking the bandage things out of her mouth”. I could just imagine her stubborn face as she awoke to find two big bits of gauze in her gob, soaking up the blood, and her thinking, “Well, for a start, I’m not having these in...”

But back on the ward she was in surprisingly good spirits. The surgeon appeared and told me the potentially tricky bottom two gnashers had come out far more easily then anticipated. My daughter smiled shyly at him, and he wagged his finger and in a mock strict voice told her: “Just you leave that gauze in a bit longer, Madam!”

She had some nectar from the gods (otherwise known as a yoghurt in a squirty packet thing). I gave her another. She rolled her eyes in an even bigger ecstatic reverie. We waited around for another two hours for the pharmacy to prepare her antiobiotics, and then we were out of there. Home, for a mashed potato and gravy supper. The ‘squishy’ diet for 48 hours has and will continue to provoke much conversation, but she’s getting her food at normal food and snack times, even though it’s ‘different’, so in the grand scheme of things, it’s OK.

She’s been off school today. She doesn’t seem to have any swelling, and has only had a couple of painkillers. I took her for a haircut, then she basically Netflix binged on Call The Midwife.

She discussed it with me, having worked her way through most of Series One. 

“Mum, it really, really hurts having a baby, doesn’t it?”

“It certainly does. I take it there are lots of women screaming in Call The Midwife?”

“Yep. It’s full of ’em.”


Song is Timmy Thomas - Liquid Mood

Wednesday, 25 January 2017

Re-up

We’ve re-upped. I’ve made contact with our new supplier*, given him the readies**, and my daughter is shooting-up*** again.

*been to the chemists
**handed over a GP’s prescription
***having a daily injection of growth hormone
(Do you ever think you might have watched Breaking Bad and The Wire a little too fervently? No? Just me, then).

She was on growth hormone for just over a decade from around the age of around five.  Although it was slightly more uncharted territory when she was little, it’s since become widely accepted to be beneficial for people with Prader-Willi Syndrome, and there’s some solid research to back this up. It helped my girl's body composition, strengthened her muscles, improved her motor function, gained her some height (before her spinal fusion put the brakes on this) and increased her energy levels and alertness.

But, a couple of years ago, my daughter's endochrinologist took a decision to stop the drug. I have no idea how I sleepwalked through that. I took my eye off the ball. Hell, I took my eye off the ball, left the field of play, showered and went home to Netflix and chill. My usual squeaky-wheel stubbornness was inexplicably oiled over. Enough of the euphemisms: I allowed a poor decision to be made and didn’t challenge it as I should have. 

However, my niggling doubts about the course of action - or rather course of inaction - got nigglier, and my wheel started squeaking again. After a series of discussions* with her endochrinologist (*‘discussions’, ‘pleadings’ pick a word), and after a test which proved that she did have growth hormone deficiency, my girl is back on Genotropin.

My daughter has absolutely no anxiety about being jabbed in the thigh with a needle every night. She did have a slight wobbly ‘6 on the Panic Richter Scale’ episode in the GP’s surgery when she found out that we no longer need a big dial-up plastic pen thingie to load a cartridge with her entire week’s dose into and that each of her doses now comes in its own throwaway syringe. (No, I don’t know why this was so important to her, but it was finally solved by referring to the syringes as ‘cool little mini pen thingies’).

So under supervision, before bed tonight, she pushed the plunger on her cool little mini pen thingie. And as the liquid flowed into her, the relief flooded into me. 


Talking Heads - Drugs

Wednesday, 28 December 2016

52

Food is something I have to think about a lot. As mum to a teenager with Prader-Willi Syndrome, I need to be aware of what she’s eating, what portion sizes she’s having, and how to limit the amount of frustration she feels about her restricted diet.
My daughter has no choice. We have no choice. There are valid, consequential, medical reasons for limiting her food intake and keeping her weight under control. More so than the usual arguments against and dangers of obesity. She needs to eat less than anyone else just to maintain a normal weight, and this is despite a broken little part of her genetic make-up meaning she never feels physically full up. We help her with that - we always have, and we always will.

Because of this, it’s a cause of mortal shame to me that I’ve been a porker. As I’ve got older, and lazier I’ve piled on the pounds. I slid, with considerable aid from the universal lubricant called alcohol, into Extremely Bad Habits. After cooking a Weight Watchers meal for us all and buying fruit, veg, and low sugar snacks, I’d load up on unneccessary carbs late at night, absent-mindedly grazing my way through cheese on toast, and knocking back the best part of a bottle of red just because, well, because it was Wednesday, and it hadn’t been a very good Wednesday, all right?

I had an epiphany this time last year. No, it’s not a new liqueur. It was a blinding moment of realisation. I was the fattest I’ve ever been. I weighed as much as a prop forward with a pie problem. I was desperately unhappy with my levels of bulk. I hid from photos. I hated going to buy clothes. I didn’t want to book a check-up with my GP because I thought there was a pretty high likelihood that he’d warn me I was a prime candidate for diabetes. When I laid down in bed at night, I felt tired, unhealthy, and unattractive. 

I’ve been all kinds of shapes and sizes over the years and my husband has never once criticised my size or suggested I change anything about myself. (I have a sneaking suspicion this could be because when I put weight on, a lot of it goes on my tits, but anyway, it’s one of his more endearing qualities). He still told me I was beautiful, but I didn’t feel it, and I had serious concerns about his failing eyesight. I thought long and hard about what to do. Not letting him make an appointment at Specsavers wasn’t a proper option.

I needed to lose weight, but I needed to find a good way to do it. Not the same bloody crash diets I’d yo-yoed on before, starting off keen, finishing lacklustre-ly, and ending up bigger than before.

So I hatched a plan. A slow plan. A simple plan. Eat smaller portions, drink less often, and move about more. I know, I know, I should patent this, quick. It’s genius, isn’t it?

I saved my boozing for ‘dos’. Birthdays, parties, ‘event’ gatherings. Netflix nights at home did not count.

I had hearty porridge breakfasts to set me up for the day. I cut right down on bread, loading up ryvitas with tasty toppings at lunchtime. I stopped ‘picking’ at rubbish stuff, reaching for fruit instead of chocolate as snacks. But I didn’t cut it all out and I didn’t count calories. I just paid more attention and no longer ate for the wrong reasons (boredom, stress, you know the score).

The moving bit was gradual. I began by walking. I stopped using the car to go down the shops. I started doing regular five mile yomps with my mate (this is not a sapphic euphemism, a ‘yomp’ is a fast walk, and she has way longer legs than me, so it was fast). 

I swam. I bought a waterproof MP3 player and loaded up on podcasts and audiobooks, and I swam and swam and swam. (I do five miles a week. In November, I did a swimathon for PWSA UK, and did 400 lengths in an afternoon, going all pruney-skinned in the process).

I started playing badminton with the old folk down at the leisure centre. Some of said old folk are former county players and make me run around. A lot.

I took up squash. At an early training session, the coach had us doing little sprints up and down the court. I finished last out of the four of us. It nearly killed me. Now it doesn’t. I won a handicap tournament cup. In squash terms, I’m still pretty rubbish, but I’m competitive as f**k, and I will not give up on a point.

I was lighter. I felt better. I decided to try running. The last time I did this to any extent, I was about 30, and I remembered it being hard. But I had the bit between my teeth, so I started slowly, with the Couch To 5k app on my phone. It beeps at you and tells you to walk for five minutes, then run for one. 60 seconds seemed like an effing age. I thought I was going to have a heart attack. Then, after doing only five of the nine weeks, where you gradually increase the running times week by week, I skipped ahead, switched it off, and ran the whole 5k. It was still hard, but I felt like a God. A red-faced, out of breath, wobbly-tummied God.

In September, I joined a ladies’ rugby team. Where I wasn’t the fastest, or the fittest, but by  ‘eck, I always gave it my best. And I coincidentally discovered that leaping about and scrabbling in the mud is really funny.

So as the year comes to an end, I can now run 5k in under 30 minutes, and I’m close to breaking the hour mark for a 10k. I’ve run a couple of ten milers and I’m signed up for a half marathon. I set myself a target of running 100 miles a month, which I’ve just done for the second month in a row.

But my body is not a temple. Or if it is, it’s one which sometimes hosts hedonistic pagan festivals. I’ve been to plenty of parties, and over the festive period in particular have scoffed and chugged my way lots of scram and booze, but I’ve also pulled on my trainers and gone for a morning constitutionals to keep my hand in, or feet in, or whatever.

And I’ve lost 52lbs. Three stone 10lb. Approximately 23% of my bodyweight. That is, in every unit of measurement, a lot. (Oh, and I suppose, if you have basic competence at maths, you can work out what I weighed. I’ll give you a minute to push your jaw back up from the floor). 

The man I’ve shared my life with for 27 years has done what he always has done - been there for me. When I say there, it’s not right there, running alongside me, but rather over there, being a sports widower, looking after the kids while I’ve been out jogging round by the wind turbines, or chucking an odd-shaped ball around a floodlit pitch. So although I didn’t do it with him, I couldn’t have done it without him. He’s been rewarded, of course, in my increased levels of er...fruitiness. Although he has lost out in the tits department. (They get smaller first, you know. I swear I lost half a stone off them before any other part of my body changed. Am I oversharing again? I am, aren’t I?). 

So, I was scrolling down through my Bookface timeline today - something a lot easier now that my boobs don’t get in the way anymore -  and something struck me. Well, something after my first thought, which was: ‘God, you’ve become of those annoying twats who post all their run times’, which I ignored. No, the thing that I realised for the first time was that now, sometimes I post photos of myself. Which I really didn’t do much of before. Because I used to cringe at my image. And now I don’t. I don’t want to curl up into an embarrassed ball when people tag me in a photo (well, not always, although the recent one of me having a lap dance from a half-naked man in an elf-costume did have me dusting off the cringeometer, but that’s another story). 

For so long, I hated seeing myself in a photo and being confronted by the massive, muntering size of this person I didn’t recognise. 

Now I see me again. 


Photo at the top of the page: The left-hand side image was taken in December last year. The image on the right was taken this month, after rugby training turned into a bit of a mudbath. By the way, I haven't got a broken nose, that's just the mud and the light!


Song is Lucy Dacus - I Don't Wanna Be Funny Anymore. Chosen because it's bloody great, and I couldn't find a song called ' I Don't Wanna Be Fat Anymore'

Saturday, 24 December 2016

Polar

We are about to embark on our rather marvellous ‘traditional’ Christmas Eve family visit to the local curry hut.

Unfortunately I’ve been forced to warm up with another tradition, instigated and enforced by my daughter with steely authority. Yes, I’ve had to watch Polar Express again.

I’d like to point out that I am filled with fine festive spirit (and a fair quantity of cointreau). As evidence, I’d like to state that over the holidays so far I’ve enjoyed watching Elf, Home Alone 2 (apart from the jarring and almost ruinous cameo from Donald Effing Trump), and Scrooged. And I’m really looking forward to watching The Muppets Christmas Carol when we roll back home filled with tikka, mango chutney, and Christmas cheer.

However, Polar Express is the one film that can turn me into a Grinch. It’s atrocious. First of all, there’s the ‘uncanny valley’ graphics - which manage to turn Tom Hanks, the man who put the unc in avuncular, into a sinister waxwork. Then there’s the horrific soullessness of the deserted, dystopian Amazon warehouse at the North Pole (when the kids get lost  there, I have a genuine fear that the night shift manager will suddenly appear and they’ll be forced to start zero hour contracts). And finally, there’s the creepy, Joe-Pesci-alike-and-not-in-a-good-way elves.

But hey, it’s over now. I’m OK. Poppadoms are soon to be consumed. I’m calm. 

My girl keeps whispering to me that she doesn’t actually believe in Santa any more, although she did write a long and extremely detailed list to him, and was extremely concerned about whether I’d posted it or not, so I would say that bets are well and truly being hedged. My boy is trying to act cool by rapping along to Twenty One Pilots songs, but is so excited I might ask him to turn the oven on in the morning, because there’s no way he’s going to get any sleep tonight.

The turkey’s defrosting. I’ve borrowed my mum’s hostess trolley, which - thanks to the dear, departed Victoria Wood - I keep pointing to and slapping my arse, whilst winking at my husband and asking him if he’s got his Woman’s Weekly ready.

Happy Crimbo, people.

Video is Victoria Wood - The Ballad Of Freda & Barry

Tuesday, 22 November 2016

Corrie

“You’re Tracy, aren’t you?” my daughter asked.

Tracy Barlow - or rather Kate Ford, the actress who plays her in Coronation Street, nodded in reply. “Yes, I am. It’s very nice to meet you.”

My girl nodded back. “Yes. You look like Tracy.”

Kate laughed. “I should hope so!” (Although I couldn’t help thinking that Kate did originally take over the part from another teenage actress who went upstairs in a strop and came downstairs as an entirely different person, as people sometimes do in soaps).

Meeting Kate/Tracy was a high point in a day of stratospheric high points, as me and my awestruck girl went on a tour of the Coronation Street studios and set. 

It's not normally open to the public, but we had managed to wangle a personal VIP tour (by lucky virtue of a relative being friends with someone who’s connected to The Street and who pulled a few strings, or shook a few cobbles, or whatever the Weatherfield saying is for getting us through a normally firmly-closed door.

We were welcomed by ‘duty officer’ David - who proved himself to be an avuncular, astute, and wickedly funny tour guide.

He patiently explained how some of shops and homes were just fronts, with their insides in the indoor studios. (This whole issue properly boggled my daughter’s mind, despite seeing the physical evidence right before her eyes). He took my girl into Underworld, where she pretended to sew a pair of knickers. He watched, amused, as she studied the menu in Prima Doner (checking for spicy options, of course). She was fascinated by the fake food in the counter display fridge at Roy’s Rolls (are you spotting a Prader-Willi Syndrome pattern, here?). He let her ‘pull a pint’ in The Rovers Return. He showed her the ‘lucky’ mascot stuffed toy cat that has nestled in amongst the crisp boxes for years. And he told her of the superstition that actors have not to go through a certain pub door - because legend has it that their Corrie street career will then be over.

In amongst the perfectly-judged, straightforward explanations to my girl, David shared some more subtle insights with me - leaving me flabbergasted at the care, attention, and astonishing levels of detail in the set design and dressing, where colours, textures, and comic or poignant background details are painstakingly matched not only to the characters, but to the tone of particular scenes and storylines.

At one stage we peeped our heads round a back alley before realising filming was going on further along the street. We had to jump back out of sight, shushing and giggling at the idea of our shocked little faces appearing in the background of a dramatic scene. It would have been the best ever game of televised Where’s Wally, though, wouldn’t it?

We even got to lurk amongst the crew, watching split screen monitors show an actual studio scene being filmed in front of us. The acting seemed nondescript, flat, and distinctly underwhelming, but when we saw the playback on the screen just seconds later, the drama was transformed, with the close-up camerawork revealed powerful emotions, delicately and skilfully played. It was a revelation. (I’m not sure that my girl appreciated it in quite the same way, but by ’eck, she was mesmerised at seeing something ‘instantly’ transported to the ‘telly’). She assumed it would be on tomorrow night’s edition, so David had a little bit of explaining to do about how this was a scene scheduled for transmission in January next year. I’m not sure she quite got to grips with the time travel aspects of this, and I have a feeling this may be a subject she will wish to discuss with me, ad bleedin’ infinitum. It may ultimately drive me to drink. Newton & Ridley Best Bitter, probably.

We were there for an hour and a half. My daughter smiled for all of it, and for most of the four hour car journey home, as she clutched her visitor’s badge, and her ‘goodies’ from David: a Newton & Ridley beermat, a Nick’s Bistro serviette, and a Corrie key ring. 

“I loved it, Mum,” she said. “I know,” I told her. It was obvious to me and everyone on set who had seen her poodling about today, wringing her hands excitedly. It had been written all over her beaming face.



Song is Skids - TV Stars. All together now, "ALBERT TATLOCK!"

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