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.
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.
I love sitting in the shower. It's one of my favourite meditation spots.
And Lush absolutely ROCK
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 :)
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.
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.
How about a plastic stool to sit on in the shower recess?
I may have to consider it at some point, but I actually like sitting on the floor.
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.
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.
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.
I have Schrödinger's Spoons - I never know if I'm going to have them until I look for them *grin*
A lot of what you write reminds me of Sonia, who has similar problems with her MS - particularly the problem of not remembering to accept help when offered or to deliberately do as little as possible to conserve energy.
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.
It may also be that the vigorous and energetic ones are the ones where you can't help but notice the change.
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*
My local Bunnings (hardware store) were selling "grabbers" pretty darn cheap. Also enquire at your pharmacy for places that sell mobility aids and things, they can have some pretty neat stuff that is cool for mobile people too, like the time I dropped my sunnies in the fish pond and used mum's grabber to get them out.
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.
2007-01-02 04:28 am (UTC)
Re: dealing with not beeing able to do stuff
Thank you. Sincerely, thank you. That means a lot.
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*
In my experience I've found it hard to walk the fine line between "I have a serious health issue and need help" and "Yes, I have a serous health issue, but am still a functioning adult human being who'd like some independence."
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.
I don't want to appear melodramatic, but I also don't want to be left alone either.
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.
I know that this may sound...oh fuck it I have no idea how I'm trying to/not trying to sound. I've pretty much gone through the emotions you speak of. I can't put into words how it makes me feel to not be able to do things I previously took for granted. For example, run. But seeing that you are the person whom I know you to be, it can and will get easier. Pretty much by way of excepting that there is no choice in the matter. I still go down sometimes. I spent my 25th birthday alone crying my eyes out because I thought that I was a waste. I was 25 and had gone absolutely nowhere with my life. But it's my thought processes of realising that none of this is my fault so stop complaining and get on with it that help me through it. I've spent 4 years now of telling myself that aswell as forcing myself to not deal with everything alone. I've found it's a strange balance of consciencness and exceptance. Reading your post is like reading a reflection of myself since I was diagnosed. I hope some help can be found in that for you, cause as I've said before, I'd like to :)
But it's my thought processes of realising that none of this is my fault so stop complaining and get on with it that help me through it.
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 :)
like kerry aid, it's, easier when you've lived with something for a long time. Having said that, you can get used to adjusting to different things over time and one day it will just seem like normal.
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.
I don't know what I can do to help but if you think of something remember: you've got my mobile number. Use it. Please!
(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)
*hugs* I can definetly empathise with your current state as I have seen alot of friends and reletives who use to be so full capable of many things and so active that seeing them any other way came as a hell of a shock .
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 .
Have you noticed yet that the entries you tag with "Feel free to skip" usually get the most comments?
Yeah, people are nosey bastards, eh?