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?"
Page 1 of 4 << [1] [2] [3] [4] >>
ext_54569: starbuck (Default)

From: [identity profile] purrdence.livejournal.com


In a fit of insomina last night (or was it this morning) I read all of hespa's LJ. She does sound like a really nice, caring person. Those kind of persons are sort of like buses when you don't have the timetable with you. Sometimes you have to wait a bloody long time for them, and sometimes they arrive just when you need them.

From here all I can do is send big cyberhugs down the line. I'm good at that *bighugs*

----------

Also, and this is just an idea and you can ignore it if you see fit, have you considered getting one of those shower caddy things that attach to the shower wall with suction caps. You could put it at sitting height in the shower.

From: [identity profile] dalekboy.livejournal.com


Both Hespa and Mondy rock, and seem to be good at dealing with me.

We have a caddy, but I use Lush shampoos, that are solid, so you don't want them getting sprayed by the shower otherwise they just disappear down the drain.
ext_54569: starbuck (Default)

From: [identity profile] purrdence.livejournal.com


Y'know, I had to go google 'lush shampoos' as I don't think they get sold over here... of course now I know I am going to have to resist the urge to buy some.. they sound really nice.

Yeah, I can see why a caddy might not be the ideal solution then. Stick it in a stocking and tie it to the no showery part? I've seen that with soap...

From: [identity profile] callistra.livejournal.com


I love sitting in the shower. It's one of my favourite meditation spots.
:-)
And Lush absolutely ROCK

From: [identity profile] callistra.livejournal.com


I have a huge weakness for the bath bombs they make, and the solid bar massage oils. I like to take some of each to conventions... you know... just in case....

ext_54569: starbuck (Default)

From: [identity profile] purrdence.livejournal.com


*goes looks in the bath bomb section*

ohmigod. That's like sex in a bath product...

*hrrrm* from serious to smut in 6 posts. I'll shut up now.

From: [identity profile] kaths.livejournal.com


Put it in a plastic container on the floor? Not sure if you need it to dry it out between washes... but you could attach the container with a piece of string to the caddy so it's easy to pick up without bending down, and at some point after your shower you could haul it up and put it open on the caddy to dry out.

Btw do you have one of those 'grabbers'? Bending down to grab stuff off the floor (especially if you're in pain and therefore clumsy and forever knocking stuff over) takes a fair bit of energy, and the grabbers with the claws on the end are fantastic. Except when they're at the other end of the house when you need them...

From: [identity profile] kaths.livejournal.com


I think one of the most frustrating things about your situation would be the unpredicatability of it. At least with me, the angst I was feeling last night about my situation, my pain levels, limitations etc were as a result of having to bend and pick up the dog for the last few days to stop her hurting herself jumping up and down with stairs and chairs. There was a *reason* for it. And as a result I've implemented some things to minimise it (eg a ramp at the back door she can use instead of the stairs, sitting down before picking her up so I'm not bending as far etc).

On the other hand, if I'm having a bad patch, I can't suddenly find that I'm okay for a short period!

I sometimes get a jolt of fear about how my life would be if other discs decided to go, if decisions I make in the future make me worse etc. You seem to have a better handle on coping with future possibilities better than I have, despite the unpredictability and seriousness of your situation.

Anyway, kudos for you in the way that you are handling it. Not just managing it day to day, but how you are able to reflect on it, and increasingly share it with others.
ext_54569: starbuck (Default)

From: [identity profile] purrdence.livejournal.com


well if there were holes in the bottom it could dry out, couldn't it?

From: [identity profile] kaths.livejournal.com


If it wasn't sitting right on the floor... hm, perhaps a little platform for the soap container, with just enough room under it to let it dry out!

From: [identity profile] http://users.livejournal.com/doctor_k_/


How about a plastic stool to sit on in the shower recess?
ext_54529: (Default)

From: [identity profile] shrydar.livejournal.com


I use a couple of Lush shampoos. Sonic Death Monkey is liquid, but the other is Reincarnate - it's solid, but the consistency is such that I deliberately keep it on a small metal rack on the low ledge around the base of the shower so that there's enough spray to keep it moist enough to scrape gunk off when I want to use it.

If you use one of the shampoo bars (my brother loved the one J sent him when he was serving overseas), perhaps a tin would help? The site claims they're $4.50, but we've managed a few freebies from our local :)
ext_54529: (Default)

From: [identity profile] shrydar.livejournal.com


Now, do you really think I'd have agreed to move back to Australia if there wasn't a Lush in Perth? ;)

From: [identity profile] smofbabe.livejournal.com


It must be difficult and very frustrating to feel helpless physically, especially for you who used to do something as active as droving. The loss of control physically, and the unpredictability of it, would have to increase your feelings of helplessness and therefore your increased desire to be in control of whatever you *can* control. The difficulty is to view the people trying to help you as just trying to help you, their friend, not treating you like a helpless person. I also suspect that this is hitting you a bit where you live in terms of being proud of having been so active.

All this easier said than done, of course. I think you're incredible for having been through all of this so far while staying reasonably cheerful and positive. I hope they track this damned thing down soon! Hang in there.
ext_54529: (Default)

From: [identity profile] shrydar.livejournal.com


Bravely written, sir. More *hugs* from the west coast, and I'll try to be conscious of all that when next you're in the neighbourhood :)

Must admit, one of the things I really need to work on is steering between agreeing to things I cannot healthily manage, and hurting people by obstinately saying no without making my reasons clear. For me it's more about balancing my needs with the needs of others, with a touch of running out of spoons.

From: [identity profile] dalekboy.livejournal.com


Except when they're at the other end of the house when you need them...

That made me laugh :)

Having a plastic container that I chuck the bar into as I'm getting in, and then I put the bar on the caddy as I'm getting out, sounds like a good possible solution.

From: [identity profile] dalekboy.livejournal.com


My preference was for the previous version, but they stopped making it. I've warmed to Reincarnate and it's now what I use.

From: [identity profile] dalekboy.livejournal.com


With the water restrictions, it's why I limit my number of showers a week, and do a lot of other water saving things. A shower is really good alone time.

Though that said, they are lovely to share with the right person... In a decent sized shower, otherwise you're fighting over the water :)

From: [identity profile] callistra.livejournal.com


And showers with glass walls do NOT fit three people in them well. Unless they are specially modified for such activities.
=-)

From: [identity profile] dalekboy.livejournal.com


When I have a good period, I absolutely relish it! :)

I don't see my situation as terribly serious, more frustrating, but I've always been a realist, so that means making allowances for future outcomes. I'm certainly letting it push me in directions I've felt I should move but have been slack on, like telling people they are important to me, rather than worrying about what may happen.

Sharing it is important, because if I want to maintain any semblance of a normal life, it means coming to terms with my limitations. I'm crap at that, often over-commit, and I hide how badly I'm doing so I'm not a nuisance. Plus I also just don't realise how badly I've been doing until I stop.

Classic example, pottered about yesterday for too long, decided to have a mid-afternoon lay down, and took about two hours to get around to it. The moment I lay down, I realised how long I'd been keeping myself going, well past where I should have stopped for a rest. I had no idea until that moment just how wiped-out I was. But if someone had asked, I may have paused and realised that no, a lay down was called for much sooner.

From: [identity profile] dalekboy.livejournal.com


I may have to consider it at some point, but I actually like sitting on the floor.

From: [identity profile] dalekboy.livejournal.com


I think you're incredible for having been through all of this so far while staying reasonably cheerful and positive.

I look at a lot of folks who are far worse off than me. I can still walk, talk, shag, wipe my own backside, and type. So I gots nuttin' to complain about :)

I'm usually pretty chipper. It's why I try not to whinge about my depression jags even though they disrupt my life - normally I'm as happy as any five other people, and delighting in all sorts of stuff - I sort of figure that the depression is the price of being insanely cheerful most of the time.

For the record, I wasn't depressed yesterday, just very tired, frustrated and upset.
Page 1 of 4 << [1] [2] [3] [4] >>
.

Profile

dalekboy: (Default)
dalekboy

Most Popular Tags

Powered by Dreamwidth Studios

Style Credit

Expand Cut Tags

No cut tags