Needed - dose of reality

[dalekboy]

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?"

Comments

[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.

[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.

[rendragon.livejournal.com]

Hespa is even better in person :)

[callistra.livejournal.com]

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

[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 :)

[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.

[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.

[http://users.livejournal.com/doctor_k_/]

How about a plastic stool to sit on in the shower recess?

[dalekboy.livejournal.com]

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

[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.

[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.

[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.

[dalekboy.livejournal.com]

I have Schrödinger's Spoons - I never know if I'm going to have them until I look for them *grin*

[angriest.livejournal.com]

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.

[dalekboy.livejournal.com]

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*

[leecetheartist.livejournal.com]

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.

dealing with not beeing able to do stuff

[khoath.livejournal.com]

Well when we see you we'll be as helpful as we can without beeing annoying. It's easier for us because we grew up with our disability; no two ways about that. that said, I know how it can be to ask for help; and how unempowering that can be. Allways remember that because you give so much to the world, the vast majority of people are happy to help you when they can and when you'll let them. Helping you is a pleasure. You can do things that they would never dream of doing; but they can do things that you now dream of doing but need a little help with. If you ever need to talk to us about anything; feel free; we might not be the most simpathetic pair on the planet but we know what it is like not to be able to do something. Example we can't drive. That isn't the end of the world but it makes public holidays interesting. I'm glad you realise that you need a little help these days with average stuff; and I hope you can get the type of help you need. You're a great bloke, and I think we'd all rather we helpwith the mundane stuff so you'll have more energy to spend time bistowing your unique perspective on the world. I don't mean to sound as if i'm pssing in your pocket; but you are one of the 20 or 30 really cool people I have met over the years.
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.

Re: dealing with not beeing able to do stuff

[dalekboy.livejournal.com]

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*

[battblush.livejournal.com]

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.

[dalekboy.livejournal.com]

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.

[lie-xin.livejournal.com]

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 :)

[dalekboy.livejournal.com]

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 :)

[ghoath.livejournal.com]

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.

[arcadiagt5.livejournal.com]

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)

[meljane.livejournal.com]

*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 .

[gutter-monkey.livejournal.com]

Have you noticed yet that the entries you tag with "Feel free to skip" usually get the most comments?

[dalekboy.livejournal.com]

Yeah, people are nosey bastards, eh?

[leahcim.livejournal.com]

sitting on the floor of the shower

This is so asking to become part of a poll. :P
*looks in the direction of people whose first name starts with the letter D*

[purrdence.livejournal.com]

*looks around*

Drhoz!

[sjkasabi.livejournal.com]

I don't have anything to offer, except virtual *hugs*, and frustration at the universe and the medical profession on your behalf.

But you have those, and my love.

*hugs*

[dalekboy.livejournal.com]

Thank you, contact with you always means a lot. Though we have little contact, you are without doubt one of my most trusted and deeply loved friends.

[bigevilogre.livejournal.com]

You know, it's a long shot, but some of what you're going through sounds similar to what someone at work went through. She had some sort of... anaphylactic shock in her brain or brain stem or some such thing. She's been gone for several months but she is starting to get better with treatment.
I mean, I don't know what all the docs have done to check it out in you or if there's any way they can tell without a specific moment of history to tell that it's what it was. Do you think it's a possibility that you have had some sort of thing like that happen to your central nervous system? I had a very minor case of shock to my central nervous system by a medicine called Geodon, which also sounds a lot like what I have read.
There's like, a 1% chance these thoughts could help but... it's better than a poke in the eye, aint it?

[dalekboy.livejournal.com]

They did do brain scans, but something that altered chemistry may not show up.

And any lead, no matter how vague, is a good one at this point.

[willowgypsy.livejournal.com]

So many people had already responded by the time I got to read this that anything I wanted to say seemed moot and over-stated...

So... here's this...

I am so glad to know you and to be included in some way in your life, even on the periphery, and if I can ever be there for you like you are for me, let me know.

(sorry, been busy, did you get my sms hug?)