Sunday, 16 May 2021

Escalate


Prader-Willi Syndrome is a train ride. An old-fashioned, steam-billowing, noisy, tooting train ride. Staying on the tracks is tough, cornering can sometimes be tricky, and when you hit hills you have to shovel coal like crazy to get the top, but the trip, the exhilarating trip, is worth it. 

Except when you crash. 

My daughter’s train has been teetering for some time and this week, it’s gone off the rails. Fittingly, it just so happens to be both Mental Health Awareness Week AND Prader-Willi Syndrome Awareness month, so I’ve got to hand it to her for being totally on-brand. I’ve had phone calls and meetings with the college about my girl’s unusual and uncooperative behaviour. She’s had out of character outbursts, episodes of defiance, tears, and wild-eyed conversations about ideas and mis-conceptions that have been swirling around in her head. 

It’s been a throwback to a terrible time, eight years ago, when - out of the blue - my daughter flipped the flipping flip out, smashed stuff, became hallucinatory, and scared the living bejesus out of us, as we thought she might have a brain tumour or some other terrible condition causing her to be almost unrecognisable. 

Then, after tests, appointments, and spates of more unusual behaviour, she was diagnosed as having a mood disorder on the spectrum of bi-polar. She was prescribed mood stabilisers, and they worked. They’ve worked ever since. They’ve put a safety lid on the highs, and a cushion under the lows, and we got our daughter back. 

Now, however, the lid’s blown off. Whether it’s the cumulative effect of lockdown, with her anxieties building and building and building over the past 14 months, or whether it’s the fact she’s finishing college in just a few short weeks, and the huge life changes that will entail, or whether it’s a chemical thing I don’t know. I just know that it’s hard not feeling able to leave her in her room on her own. I just know it’s tough having to hold her hands for an hour to stop her scratching herself until she bleeds and to prevent her throwing things across the room (the score is 1-1 in the dodging objects Olympics - I ducked under the TV remote, but her headphones got me right on the bonce). I just know it’s impossible trying to reason her when she says people have said things to her that I know they haven’t. I just know it’s upsetting to hear her say she thinks ‘something is inside the floorboards trying to get in’. I just know it’s heartbreaking when she tells me: “My head feels funny and tells me to say things. It keeps making funny noises and it’s going round in circles”. 

Pyschosis is the word that is circling in my head. I know full well that people with Prader-Willi Syndrome are more susceptible to psychosis. This could be it. But it also could be the freaky deaky effects of a lack of sleep, as I discovered back in 2013. Let’s face it, we’re all prone to breaks from reality and hearing voices if we’ve been awake night after night - and she has admitted she’s not been sleeping well. So, yes, essentially, I’m telling myself anything I can think of to keep calm, as I stand by the tracks, covered in soot, with the train carriages strewn around me. And yes, I’ve gone back to the train analogy. Give me a break, I’m knackered. 

On Monday, when things were at a less serious DEFCON level, I spoke to my daughter’s very kind and understanding consultant psychiatrist (who she’d been discharged from, because she’d been on an even keel for so long). He told me to log everything in a behaviour diary, so we can identify try patterns and triggers, and to contact him if things escalated in the meantime. Well, they’ve escalated. Me and my escalating Excel sheet (already reaching biblical proportions of word count) are getting back in touch. 

I hate to post this picture of my girl from yesterday. It seems too raw, too private. But at the same time I can’t sugar coat things. Sometimes people need to see the worst to appreciate the best. She’s smiling, watching The Yorkshire Vet, as I type this. I think she slept better. 

She doesn’t look the photo today. She looks like herself. 

We’ll get her back to herself.



Song is Get Back by The Beatles

The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. They are in desperate need of funds - and they are a lifeline. If you can spare just a couple of quid, it would be hugely appreciated. The link to my fundraising page is here: https://www.justgiving.com/fundraising/carolyn-drake5

Sunday, 4 October 2020

'Erriot

My girl is 22 today. As you can see from the photo, hair-brushing was not first on the agenda this morning, but opening presents was. Her love of unwrapping gifts has not diminished over the years, unlike her bookshelf space. Double-stacking is now a thing in her library bedroom, with rows of books hidden behind rows of books. A rotating system might need to be instigated.

We’re off out shortly for a curry, although it’s just a small family gathering because of Covid-19 number restrictions. We have had time to prepare her for this, and as long as she gets her tikka, and a spoonful of her Dad’s spicy dhansak sauce, she can cope with this, as food beats friends in the world of Prader-Willi Syndrome.

Before that, we’re making a start on one of the 89 episodes of the surprise present I got her: the complete DVD box set of the original All Creatures Great And Small. It wasn't actually on her...shall we say...quite detailed and extensive birthday list (see photo below). Going ‘off-list’ isn’t always advisable and neither is me accidentally getting her the wrong edition of the Usborne Elizabeth 1 book, but that’s a whole other story. However, she’s mad on the new remake of the 70s TV programme so I took a punt - and it paid off. She's shaking with excitement at seeing the original cows’ arses that James Herriot stuck his arm up. 

The theme tune is starting up and bloody hell, I’m transported back to being a little kid of seven or eight, watching this with my mum. I’d give anything to have her sitting on the sofa between us, cuddling her granddaughter and laughing at Mrs Pumphrey’s Tricki Woo. 



Video is the opening credits from All Creatures Great And Small. 

Wednesday, 10 June 2020

Vulgar

My daughter spent a long time tackling a college task today; she had to write independently about how she has been affected by life in lockdown. 

Once she finished, I helped her correct just a handful of the more obvious spelling mistakes, including the most...um...shall we say...‘glaring’ example in the first line of the text.


I think we can all agree that, until the crossing out, the most surprising effect of the pandemic seems to have been her finding hitherto undiscovered skills in turning vulgar nouns into adverbs. Either that or she has accidentally stumbled across a startlingly self-aware entry in Dominic Cumming's lockdown diary.

Here's the whole thing. She's submitted it now, so if you spot any more accidental ****s or ****s, it's too late to amend it.






Song is Roisin Murphy - Dear Diary

Thursday, 21 May 2020

Day Twenty Six





So it’s done. 

After 25 blogs in 26 days I rashly vowed to let my son loose on my hair with electric clippers in what was effectively a mum sanctioned revenge attack.

The proviso was that my fundraising total for the blogathon for the Prader-Willi Syndrome Association UK needed to tip over the £1000 mark and hit £1250 by this afternoon. 

I mentioned this yesterday teatime. The Just Giving notifications began to ping like a bleeding Nintendo game. We passed the target, you utter bastards. Thank you, thank you, thank you. I can resent you and thank you at the same time, can’t I? 

Here’s the video. I do recommend watching all the way through, as my boy is on top smart-arsery form, and my daughter is providing a classic PWS demonstration of just how easily slight panic can set in in a new and unfamiliar situation.

I keep rubbing my head. My boy thinks I do NOT look like Sinead O’Connor, but DO look like Matt Lucas. 

However, my husband and I just came up with a better lookeelikee. We’re going to do some painting next week and we have just realised we can now re-enact the decorating scene from The Royle Family. And yes, I’m Twiggy.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972





The Royle Family - Jim & Twiggy


As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I wrote 26 blogs in 26 days, then let my boy loose on my hair with electric clippers. The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living.

Please give something if you haven't already.Thank you to each and every one of you who have donated. 

Wednesday, 20 May 2020

Day Twenty Five

I like a big finish.

Tomorrow will be the last of my 26 blogs in 26 days to raise money for the Prader-Willi Syndrome Association, the charity closest to my heart and soul.

Other people may have chosen more physical feats for their 2.6 Challenges, but I firmly believe that prattling on has its place in the world, and I have planted my prattling on flag here with pride.

As I write this, the total on my fundraising page stands just shy of a grand. This is amazing. 

But I’ve decided to make a rash promise to try and squeeze a few more quid out of people.

This could be because of my altruistic nature. It could possibly have more to do with my befuddled lockdown brain finally running out of things to say as I lose the plot entirely.  You can examine the evidence if you like - I just had a re-read of all the posts so far and I’m frankly surprised today’s doesn’t just say ‘All work and no play makes Jack a dull boy’.

So I’m making a pledge. If I can get another £250 for the PWSA UK by tomorrow afternoon, I will shave my head.

Or rather, I will let my 11-year-old son loose on me with the clippers. Which will be an extreme act of revenge for him, as I gave him a very bad buzzcut near the start of the lockdown, which he still hasn’t forgiven me for eight weeks later. I’m started to wish ‘gloating glee’ hadn’t been my go-to demeanour. The words ‘suck it up, baldy boy’ are going to return to haunt me, aren’t they?

I know this is not an original idea. People have shaved their heads for charity since as long as I can remember. 

But what you have to take into account is my big old potato face, which has filled out considerably due to reckless levels of beer as I have inventively interpreted government advice to Stay Home as being Stay Home and Get Pished. (This is making the Stay Alert bit much more difficult, I can tell you).

Mine is not an elfin visage, with delicate features. As much as I would love to end up looking like Sinead O’Connor, I have more than a sneaking suspicion I will bear a far greater resemblance to Varys from Game of Thrones. Or that bald woman out of Total Recall. 

So look, 100 of you, divvy up. £2.50 each. Let’s say £2.60 to tie in with the 2.6 theme.

And you can all have a great big laugh at my great fat head.

Oh God. I’m going to regret this. Share away, you bastards, share away.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972


Song is James Brown - Payback


Film clip =  'All work and no play...' - The Shining

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. I love each and every one of you who donated. But I will have a little bit of hate for those of you who contribute in this little last push if you manage to force me to look like an idiot for the next few months. You do realise that if you make me do this, a cure will be found instantly for Covid-19 and millions of people will be getting their hair done by professionals, who would NEVER let me do this.


Tuesday, 19 May 2020

Day Twenty Four


I just fell through a portal into the past. 

The sight of our newborn baby girl in an incubator in the hospital's Special Care Baby Unit, captured in this photo from 21 years ago, was skin-tinglingly visceral.

I can feel the oppressive heat of the room, hear the competing beeps from the various machines, remember how overwhelmed, how tired, how shell-shocked I was, and how tiny and helpless she looked.

Those early days were hard. The diagnosis of Prader-Willi Syndrome was still a few weeks away. No-one could explain why our girl was so weak and floppy, and was unable to feed without a tube. 

Those little porthole doors gave us access, to hold her tiny fingers, and sit and stare and worry and hope.

The worry and hope has never gone away. We anticipated then that life was going to be different, and it is, and always will be. 

She’s in the next room, talking to me as I write this. She loves to suddenly start speaking to me with no warning from a completely different area of the house. In the spirit of this post, I should tell you that my heart was filled with joy at being able to hold a conversation with the woman this little baby in the picture has grown up to be. I should tell you that, but my actual reply was: “Will you give it a rest? I am NOT having a conversation with you when you’re in a different ROOM!” Don’t judge me, it’s bloody annoying.

Yeah, life is different, just as we expected. But it’s unexpectedly better. Better than we ever thought it could be back then, through that portal, holding her hand, just managing to hold on.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972



Song is Nick Drake - Time Has Told Me

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. In those difficult early days, they were there for us. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Two more days, two more days, we can do it. 

Monday, 18 May 2020

Day Twenty Three

I am used to random queries from my daughter. 

My favourite ever was: “Is Hitler in the school toilets?” The answer, which should come as no surprise to you, was no. Let’s face it, however desperate a time-travelling Hitler was for a fuhrerdumpf he’d never have got past reception, would he?

Today’s question, which has been unravelling nicely over lockdown, like my sanity, wasn’t quite to that standard. 

“If I sleep on my back, I won’t get taller, will I?” my girl asked, several times. Phase 1 was launched.
“No. You won’t,” I replied.
“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it?” Phase 2 had been initiated.
“Yes.”
“Mum, if I sleep on my back, I won’t get taller, will I, and that’s good if I don’t get taller, isn’t it, because I can still ride my trike and my feet can reach the pedals.” Boom! Phase 3 was deployed and detonated.

I don’t know where to start with the flaws in her logic. Quite how choosing to sleep on her back could affect her height is beyond me. And wouldn’t it be getting shorter, not taller, that would make reaching the pedals a problem? There's also the small matter of her being 21, so her growing years are over, let alone the fact she had spinal fusion surgery at the age of 10.

But pointing this out would be a dangerous plan. Best not to get sucked in. A Prader-Willi person on a questioning jag reminds me for some reason of that quote from The Terminator, you know the one...
"That terminator is out there. It cannot be bargained with. It cannot be reasoned with. It doesn't feel pity, or remorse, or fear. And it absolutely will not stop, ever, until you are dead.".
Actually, on second thoughts, that's a bit extreme. A PWS person would stop when it was teatime. But you get the picture; they can go on a bit. The best tactics in this situation, is to agree, firmly, and leave the room quicker than Adolf jettisoning his kampf.

The only problem today was the Second Front. Running away from one child only put me in the line of fire from the other.

My boy had decided early on that this Monday would be an ‘appalling, anarchic attitude and backchat during his home school lessons’ kind of Monday. 

Attempting to supervise him on a piece of work that should have taken just a few minutes saw me eventually resort to several embarrassing clich├ęs, including: “It’s your own time you’re wasting.”

But the smart little bastard can always burst my bubble. Right when my emotion level was bubbling around ‘abolutely livid’, I warned him: “Don’t laugh. If nobody else is laughing then it’s not funny,” I said.

He didn’t miss a beat: “Tell Uncle Ian that.”

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972




Song is Johnny Nash - There Are More Questions Than Answers

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. You've got three more days of this and then I'll stop, I mean that's worth something, isn't it?