Drugs?

“You’ve been in the wars!”

An acquaintance in the changing room points to my bruises. They’re yellowing now but still very visible against my wet skin as we step out of the showers.

I just laugh it off – you should have seen the other guy! – but the truth is, this is normal. Pushing Nick’s tank of a wheelchair, getting it in and out of the car, or even just folding it up to live in the hall of his small flat, is very hard to do without some injury to self. 

Helping him get his shirt off, or put his shoes on, or move his chair closer to the table all have their risks; even when I’m anticipating it and try to duck, the force of his involuntary whacks can knock me sideways. Or the unexpected head butt as he suddenly lurches backwards, or the shin splintering kick as I stand by him in the cramped crowded lift at the hospital, me as the buffer taking one for the team instead of some poor stranger.

It’s hard to explain this to someone who doesn’t know Nick, or Huntington’s. And not everyone with Huntington’s has quite this degree of violent movement. But it is one of those things you get used to, and that probably seem quite weird to anyone outside this caring lark. Other carers have bad backs from constant lifting, washing, changing of sheets, I know. Not to mention all the invisible and psychological stresses of the role – things even the brightest changing room light would not reveal.

But as I look down at my arms and legs, I realise that the bruises are old, they’re not fresh. I think it might be some time since Nick has really lashed out, and we haven’t been out much because he’s been so ga-ga since taking these new tablets and wants to sleep a lot more than usual.

So they’re working. Well, we knew that, but perhaps they’re working in a good way. They’re making him very sleepy, even with the half dose, but if they are calming his movements then that’s surely a good thing. And to my amazement, when I came to do the online shop this week I realised that there was still a cupboard full of wine and no need to order any more, so he is drinking a great deal less.

I’m still slightly uneasy though. Nick is now taking quite a potent cocktail of medication.

The drugs used to treat chorea are typically anti-psychotics. Sometimes at high doses these can mimic just the effects you want to avoid – severe agitation, risk of falling, choking - and as HD progresses it’s not always easy to tell what is the side effect and what is the actual illness. I can’t tell exactly what effect the new tablet and the newly reduced dosage are having, all I know is that things are subtly different and his sleeping and activity pattern has changed. Maybe all we can hope for is damage limitation? It’s hard to know. *

This afternoon we are going to see the specialist again for an emergency review, and we’ll see what he says. 

Meanwhile I was wondering what to title this post and all I could think of was the Charlie Sheen character at the police station in "Ferris Bueller's Day Off". 

"Drugs?"  

And isn't that as good a way to start the day as any?  

*Thanks to the wonderful online HD community for this link about medications:

A Lesson.

So that was Christmas, as John Lennon sang, and what have I done?

Slept, mostly. Boy, have I slept, like a cat, like a baby, more than I can ever remember sleeping. Sleeping in the afternoon. Turning in early. Waking up at the normal time and then going back to sleep for another two, three hours.

I’ve been ill, though. Proper, knock-you-down-where-you-stand, incapacitating flu, where you just have no choice but to go to bed and stay there.

Thank goodness for everything stopping for Christmas Day and then that sleepy downtime between Christmas and New Year when we hadn’t got much booked in anyway.

It’s been a week now and the aches and whirly bedrooms are abating but I can still feel the virus running through my system, the cough is still hacking out of my lungs and I’m weedy and can’t martial my thoughts two miles ahead the way I usually would.

Simon took care of everything – cooked, entertained, chauffeured, ministered to bro - all the things I would normally do – and the children have been to visit, and he’s had a really cracking Christmas.

His fridge is full of cheese and home-made trifle and he’s been given enough chocolate to last him, ooh at least til the end of the week. I am so grateful.

And relaxed. Sleep is such a healer.

But during my long, fevered Christmas night, so delirious I was hanging upside down out of bed trying to cool my forehead on the tiled fireplace, awful thoughts were pounding through my head and one thing was clear : I can’t keep it together indefinitely the way I have been. Something had to give.

Simon has been beyond spectacular and what I’d do without him I just don’t know, but he still only takes care of the basics. I’m the one who keeps it all ticking over.  And what if it had just been me and bro? This was one time when I couldn’t just stagger through, feeling a bit rough but coping anyway. I couldn’t even sit up.

So yes, I feel that this illness and enforced rest has taught me a lesson: understanding my limits. 

I’ve talked in the past about needing to ask for help more, and here and there people have offered, and some really do help already, with lifts and little socials and just invaluably staying part of the picture.

But I think I've inadvertently deflected other overtures because it is always hard to explain what kind of help we need exactly when the needs can be so amorphous and yet so complex. And you’ve kind of got to know Nick to know what to do. So a lot of the time it is just easier to get on with it all myself. 

But I don’t think I can do that anymore – even with Simon's fantastic back-up, there is too much, it’s too big for us both to deal with on a sustained basis.

When Nick had his service assessment recently, the lovely case manager from the Neuro team put it very well. She said, although Nick appears to be living independently, making his own decisions, we all know that he isn’t really able to do anything without constant intervention on all levels.

So I’ve been thinking. We need more back up, and I need to ask for very specific help and more of it. 

I'm still trying to figure out what could be most useful, but I think it would be social. I'm thinking of a pool of people I might be able to call on, to go in and visit him for a glass of wine (there's no point me saying "for a cup of tea", now, is there?) and a chat, or to discuss what's in the paper with him, or read him a chapter of a book, or take him a rice pudding, or even just pop in to check that everything is running smoothly, just so that I'm not always the absolute first point of contact all the time for everything. 

I don't know quite who they'll be, these good soldiers, but if you're reading this and get a call from me, don't be alarmed - after all, you can always say no. But I need to start opening up the conversation, and it seems as good a resolution for 2019 as any. 

Kittens on the internet

Funny, when I lived in Scotland there was an expression “mortalled”, to mean that someone was really drunk. It seemed like quite a sweet turn of phrase to me, without taking in any of the real implications; now the idea of getting mortalled makes me do a whole body shudder.

Yesterday I took Nick to the hospital to get his hearing aids repaired – a simple thing, but something about the miserable day, cold and bucketing with rain and having to splosh into a huge puddle just getting him out of the car, gave me the chills.

An emergency ambulance pulled up beside us and began to unload a scared, poorly woman on a stretcher. All around us were people hobbling, being wheeled, bandaged and scarred, pale smokers outside in dressing gowns and drips, everyone looking ill and, well, mortal.

Hospitals don’t usually affect me like this but it was like seeing the world through a different lens, a horrific one that I couldn’t shake off. How bloody fragile we are, that’s all I could see. And, for the first time, one day this will be me.

I’ve not been feeling very well this week, with stomach pains and back ache. Unusual for me. Something is not at all right. I’m generally strong as a Taurean ox and not given to imagining hideous illness every time I have a cold - although I did go through a childhood phase of acute hypochondria, thanks to obsessive reading of a Victorian medical encyclopaedia (quinsy, diptheria and palpitations in the space of a fortnight. My mum got rid of the book after she’d been about to call an ambulance then realized my “appendicitis” was on the wrong side. )

But this time, something is definitely not feeling right.

I’ve not been so well this year and apart from getting older, it doesn’t take much to guess why.  Tinnitus, weird Raynaud’s type frozen fingers, feeling exhausted and dizzy. The stress of the last few weeks with ongoing neighbour problems and the man upstairs physically threatening Nick, and our attempts to get some support, has affected us all. With each day that I beg for help and no-one calls back, the acid bores another hole in my stomach and no amount of meditation or lovely spring blossoms or kittens on the internet seems to soothe the anxiety away. 

And a friend died at the weekend – cancer. She was super-healthy, it just came out of the blue. It makes you stop and wonder.

It makes you face your own mortality.

What if there were really something wrong with me? But there can’t be. Who would look after Nick? There is Simon, and the carers who are gradually gaining confidence and my trust, and a handful of helpful friends and health professionals, but it’s me who pulls it all together.

I simply can’t afford to get ill. Trouble is, being a carer affects your health. Have you seen the statistics? They’re as scary as any Victorian medical manual.

But if kittens on the internet and walking in spring blossom help a bit, and taking Nick out to the countryside for a blast of nature and the heavenly hillsides, then that’s what I’ve got to do. I think perhaps it’s my quest in what is now my 60^th year  - to keep well, mentally and physically, because one of us can’t and the other one has got to.