![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
Okay, been putting off writing this since yesterday, when I realised I really needed to write it. It's basically asking for help, which I'm not good at simply because I don't want to be a nuisance to people. Which I know is hypocritical given how easily I offer help, but there you go.
I'm not doing well. Oh I'm still pretty chipper, and I'm still getting stuff done, but there is a definite gradual decline going on (I hide it well, even from myself) and still no answers. Now this, in and of itself doesn't bother me. In fact it's motivating me to talk to people about things and do a few things that needed doing for some time, when I have the ability.
While I don't truly believe what I have to be fatal, given that I am still going downhill, it's a concept that has to be faced as a possibility. There are other possibilities also - may end up in a wheelchair, they may figure out what it is and find a simple solution, I may stabilise at this level and stay this way until I'm 97 when I'll die, in bed, shot by a jealous husband.
*shrugs* I could have been killed any number of times while droving or at other times in my life, doesn't bother me too much, except in the things that may be left unsaid or done. And at least this is getting me motivated to take the time occasionally to tell people that they are special, when once I would have left it for later. So overall, it's been a positive force in my life :)
However, yesterday I was sitting on the floor of the shower (an old habit of mine, but also a necessity these days), and I needed the shampoo. It was a bad balance/energy day. So I reach for the shampoo, using all my concentration to readjust my balance and body position as I go. It requires moving forward a bit, getting up on my knees, keeping track of my centre of gravity and how far I'm leaning over, etc. It's actually a surprisingly complex series of maneuvers, there's a reason babies not only need to learn to walk, but to reach for things without falling over - it takes time for the re-adjustment and subtle shifting of weight to become automatic.
So, all my concentration is on the task at hand, reaching forward, grabbing, retrieving. Finally, after what feels like an age, and a huge expenditure of energy, I slump back down onto the floor.
Holding my toothbrush.
I burst into tears.
Because while lost in all the concentration to keep from toppling over, I've grabbed the wrong thing. And in order to grab the right thing I have to go through it all over again, and I know how much getting the wrong thing has already cost me. The idea of even moving to repeat the process is distressing. So I spend the next 15 minutes crying on the floor of the shower. It occurs to me to call out to Sharon, and ask her help, but fuck! I should be able to reach for the shampoo without assistance.
Of course, during this whole time, I'm using up more strength crying. And I'm also painfully aware that while I'm sitting there doing nothing but blubbing away, I'm wasting water.
Eventually I get the shampoo. I seriously consider calling to Sharon to help me out of the shower, but end up getting up and out myself. On days like this, small victories mean a hell of a lot.
But it made me think about how I'm handling things.
What occurred to me on the floor of the shower was that I need more Mondys and Hespas in my life. I thought of those two because they are both people who have looked out for me in different ways previously, without making me feel useless or like control was being taken away from me. I also thought of those two because they aren't intimately involved with me in the way my wife and mistress are.
Mondy and Hespa bring different aspects to offering insight, help, or a good dose of realism. Mondy has been exceptional at stopping me from taking on too much in the past. He recognises that I will take on too much, and won't think to ask for help, not out of pride, but out of being so caught up, I forget that no, I'm actually over-committing. Many's the time he's gone "Mate, no, you can't do this. I know you want to but seriously, handball it to someone else."
And he's always managed to do it in a way that gives me the slap around my chops that's needed, without belittling me, or removing my power or confidence. He gives me a good dose of reality, and once I'm topped up, says 'Now you have some perspective, do you think you should be doing it?'
Sometimes I say, no, he's right. Sometimes I say yes, I'm going ahead. But he's looked out for me, seen me making the same old error, and made me aware of it. I approach things with such energy and enthusiasm, that other people get tricked into thinking I'm fine to do it. They get tricked because I haven't realised that my own enthusiasm has fooled even me.
So I need more Mondy's to do that and to push me to pass on jobs to others, while still allowing me the freedom and dignity to say, "No, I'm doing this one."
The Hespas I need more of for her ability to actively take a task off me without making me feel like I'm useless. The best example I can give of this is the last time we saw each other. I had my backpack and laptop, and I was sitting waiting for her. She rocked up, we chatted, then decided to head to get something to eat. She picked up my laptop and asked "Shall I carry this for you?"
"Nah, I'll be right," says I, on auto pilot, because I should be right, it's only a laptop.
"You sure?" said in a light breezy way. In which Hespa manages to indicate that it's no problem, she knows I can carry it, but I'll have to carry it later, so did I want to pass that tiny burden to her for now? She made it something she can do for me, rather than something she's taking from me.
"Y'know, you're right. Thank you, that'd be lovely."
I've always been self-reliant and confident of what I can do, while being reasonably aware of my limitations. What is giving me so much problem with this is it can vary so much within the same day. I can wake up unable to walk, and two hours later be carrying stuff around. I can have an incredibly bad day one day, and be dancing the next. So there's no baseline that lets me say, 'best not to go beyond here.'
I'm inside the fishbowl, and really do need to rely on the perspective of others to make sure I'm not ramming myself into the glass, getting my head stuck inside the miniature plastic skeleton, or floating upside down.
Of course this doesn't sit well, not because I'm unwilling to accept help or advice, but because it needs to be offered or given in a way that wakes me up and means I feel like I actually have a say. I am getting better at saying judging limitations, but given how much it varies, I can never judge accurately. And being who I am, I'd rather have to handball something than not even try it in the first place.
I also don't want to be trapped into a mindset of 'I can't do', but to achieve that I need more people who will watch for when I might be about to stagger or over-commit and say "Dude, stop. Potential problem. Take a breath. Think. Now, how do you want to handle this, and what can we do together to make it easier?"
Tags:
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
From:
no subject
From:
no subject
I had a conversation with someone once about how strange it was that the people most often struck by these sorts of ailments always seem to be the most vigorous and energetic ones - then we realised that the vigorous and energetic ones are probably the only people strong enough to handle it.
I too can not resist sitting down in the shower, particularly when washing my hair.
From:
no subject
From:
no subject
Oh that's funny
From:
no subject
ME (for the 50th time): "There isn't a goddamn cat!!"
THEM: "Then why is it called Shrodinger's Cat?"
ME: "Let me put it this way. Right now, if I lock the door and beat all of you to death, until the course coordinator comes and unlocks the door, are you all alive or dead?"
From:
no subject
Also my Dad has a portable shower bench on permanent loan from the hospital that he sits on to shower in. Although plastic chairs work well too.
From:
dealing with not beeing able to do stuff
I don't want to give one of the 2 responses to your illness that you hate, so i'll just say keep fighting the good fight when you can; and when you can't we're all here to help. Feel free to screen my comments if they're harsher than you'd expect. I turn off all my tact filters when I write these; but can turn them back on by request. Take care, Kerry.
From:
no subject
Just a plastic garden chair from Bunnings. We've got a proper 'shower chair'but it's really a big waste of money. Plastic chair is lighter and easier for other people to move out of the way.
And as for the rest of the post - yes.
From:
no subject
I don't want to appear melodramatic, but I also don't want to be left alone either.
I totally understand where you're at right now and can only extend my love and cyber-hugs and if I were with you I'd give you a real hug and hold your hand right now.
From:
no subject
I found the one in Rome by literally following my nose - it was tucked away in a market square so I just stood still, sucked in a noseful and followed the lovely smells.
The Lush at Garden City can be smelled as far away as Laura Ashley.
From:
no subject
From:
no subject
If I was someone who went to a con, did two or three average panels, no performancey stuff, and didn't spend a lot of time bouncing around in general, less people would know me, so there would be less to tell as it got serious, but also the change in my habits would not be as noticable.
The biggest problem I have is that I forget. So I will run back and forth in the backyard playing with the dog, and because I'm having fun or intent on what I'm doing, I don't think 'ok, stop now,' until I go thud.
I've been good today, went and had two hours sleep when I actually felt tired *grin*
From:
Re: dealing with not beeing able to do stuff
we might not be the most simpathetic pair on the planet
No, but I don't generally want or need sympathy any more than either of you. Sympathy is fine in small doses, but it gets addictive. You just have to look at all the 'Wah, poor little me' people on LJ, where the vast majority of their posts are about the latest disaster in their lives. Who the fuck wants to live like that?
The point of this post was basically, 'hey friends, I've just realised I should ask you to keep an eye on me. Because I'm occasionally too stupid or forget to keep an eye on myself.' I'm recognising more and more that if I keep deteriorating, I'm gunna have to ask for help.
At this rate, one day there will be a really whiney post about needing to be helped out of the shower. *wry grin*
From:
no subject
Thank you, that is a great summation of where I'm at.
That said, I've had to stop myself moving out to my underground lair just so I have the freedom to be all pathetic without onlookers. And I wouldn't have to ask for help, because there's no-one nearby to help.
Don't worry, common sense has prevailed so far. But I really do wish I was living alone, at the moment. The look on Sharon's face when I barely stop myself from collapsing is heart-breaking.
From:
no subject
From:
no subject
I think it's a pretty important thing to have people around you doing that when you've got a limited reserve of energy.
From:
no subject
From:
no subject
I know this pretty well *grin*
I've actually meant to write to you once or twice, but never know what to say. Plus I'm a slack bitch :)
That said, I look forward to catching up when I'm next in Perth, the night over at your place was one of the highlights, partially because I actually got to know you a little better :)
From:
no subject
Plus, it seems easier to talk about this sort of stuff in person. I don't always think of things off-hand when I'm writing like I do when I'm talking. So catching up will have to happen!
From:
no subject
My thing is to let Kerry know what my limits are, what the tell tale signs are, and what the course of action should be, so if I don't do the right thing for myself, he gives me a prod. Learning the tell tale signs and triggers and things to tell Sharon, will help your own awareness.
From:
no subject
Callitra and I and another friend will be selling some soaps and shampoo bars in the future and they have alo had an appearance at Swancon this year .
At the moment we only have sample bars until we can selling them properly but if anyone is interested we can give out samples .
Sorry for the plug but we want to start getting the soap selling business off the ground *hugs*.
From:
no subject
(Chuckles as I remember the SMS exchange when you confirmed it, I hadn't read the 100 Days post on "cock" then and I think my responses may have been on the surreal side)
From:
no subject
I use to be really active when I was in my earlier twenties but due to genetics , some fault of own as well as lack of education to what one prescription drug could do in the future, I'm very tired , I can't run around like I useand to relying on a type of medication such so I can reach some kind of normality .
*hugs* I'll send you and Shazza something nice in the post .
From:
no subject
I heartily endorse the idea of selling soap at conventions.
From:
no subject