Late night thoughts/notes

[dalekboy]

Went to bed and shortly afterwards my legs started hurting like mad, so now three hours later, I've both given and gotten up since the pain's not letting me sleep. Rare it's that bad, fortunately.

So a catch-up feels warranted.



Ok, let's see... well, there's been no change health-wise, nor information-wise as to my condition. It's tiresome, and at times like this frustrating, but it's more of a nuisance than anything. That said, as we hit eight months of this, it's looking more like I may be stuck with it, at least for a while longer, if not permanently. If they are having this much trouble identifying what's wrong, the hope for a quick simple cure is lessened. And even if they figure it out and there's a magic pill to fix things, I still need to get my physical strength and health back.

It does also bring with it, at times like this when I also have an ache in one of my arms that matches the pain in my legs (this is new, and hopefully it's a one-off), the idea that maybe this is going to eventually kill me. I'm not particularly dwelling on or worrying about it, in the same way that I don't dwell on the idea that on any given car trip any number of things could happen that may result in my death, but I think I'd actually be in real trouble if I couldn't occasionally admit that whatever I have may be fatal. It's no good living in denial, just as it's no good living in fear.

But it does make me aware of all the stuff I haven't done. Out of all of it, the most important part for me is the people component - the folks I haven't talked to or gotten to know better. The people to whom it's important (to me) that they know me, or I them... the talks I've not had... and so on. I still haven't come to believe in the potential fatality of this thing enough to seriously approach some folks and say "We really need to talk," but I can also feel at times like this that I am gradually reaching a point where maybe I need to start.

While I don't actually think that it is going to kill me, I also don't see much chance for improvement at this rate, as I am slowly getting worse. It's already impacted on my quality of life fairly markedly, but not so much that I can't mostly cope. I'm still adapting to the vertigo and can overcome it through sheer bloodymindedness if I don't mind it exhausting me in around 15-30 minutes, but the pain I started experiencing a couple of months back is a worry. When it hits it makes it even harder to function, and given that it comes and goes quickly and randomly, I've been loathe to use pain medications. I don't like pumping medicine into my system unless I know it's needed, and most pain meds dull the mind - when my body is betraying me, my mind is all I have left. The fact that I've begun to consider pain meds at all tells me how much discomfort I'm really in.

All that said, I have a doctor I really like and who inspires confidence in his approach. I feel like he's actually actively working on figuring this out, as opposed to the previous guy's wait-and-see attitude. If this guy puts me on something, even if I don't see the point, I be happy about trying it. And we're still compiling a list of things to test for on our own. None of youse buggers are doctors, but some have had some good suggestions, so keep'em coming. If nothing else, some of it is stuff the real docs can say "Well it wouldn't be that, that, that or that for these reasons... but maybe it is worth testing for this..."

Knowing what it isn't helps narrow the field if nothing else.

************************************

One of the things I am finding is that I'm having to cope with my loneliness and need a lot more. I'll talk about that in more depth in a 100 Days, but I have to be clear this isn't a call for you all to contact me. The loneliness and need is something I've carried with me for a very long time, and contact with most people does little to impact on it, in fact people can make it worse. Though that's no need to avoid me either, I'm getting far better at regulating it myself, because if I don't I totally fail to get anything achieved.

One of the strange dichotomies of my existence is that while on one hand I need and crave a lot of contact with people, on the other I need and crave to be a hermit to help me survive the amount of contact I enjoy. The majority of folks provide welcome distraction and fun, give me people to lavish my care, attention, interest and curiousity on, and I enjoy it. Enjoy being there for people and helping, entertaining or simply spending time with them.

But the people who sooth my heart and lift my spirit are few. Most people I find draining. That's not a complaint, I genuinely like the company of most folks, but I also find they wear me out. I don't usually get the return I need to feel like I'm not fading out, being stretched so thin I'm translucent, so I need to get away from them and recharge. I can go a long time between recharges, but not surprisingly, in recent times it's harder to do.

Many, not all, of the people I care deeply about give me the quality of contact that I most often need. Some of them also manage to shit me to tears pretty regularly, too. But whether it's a phone call, email, or in person, at their heart is something that they give me willingly and without thought or reservation - the lightest, most fleeting contact with them lifts my spirits and fills me with joy and energy. And it's not something that can be learnt either, it's something innate to the individuals.

What I'm finding now is that I'm needing to more actively seek out this kind of contact. I've never been good at asking for help, not because I'm too proud, but because I don't want to be a burden or nuisance. I often don't feel like I'm worthy of being helped, which I know is incredibly silly, but just put it down to me being fucked in the head. I do have incredibly poor self-image, but I also know it's very easy to forget that. Hell, even I forget it briefly sometimes.

****************************************************

The last couple of weeks I've jumped back into my business and it feels good. I sent off three parcels yesterday that will arrive in time for Christmas, so I'm feeling happy. It's been taking up a lot of my available energy, but it also lets me feel like I'm getting something done and bringing in some cash.

Of course, the last week's pre-Chrissy rush has delayed the post on my sexuality quite a bit. When I've had the energy to work/write, I've been spending it on the business. What may need to happen is that I'll have to go on with other 100 Days posts after all, because the sex post is going to be long and difficult to write, as is the poll. And if I stop 100 Days until it's ready, I may have trouble getting it started again. The post itself will become a chore and that will effect my attitude to the rest of it, which is no good with 48 posts to go, especially since I am enjoying doing this.

The problem with both the sexuality post and the poll is, I have to get them right. My attitudes to sex have grown over the years in a very organic way, and while there are aspects that I sometimes wish were different, I'm generally pretty happy with who I am as a sexual being. It's no good me doing a post or poll that relates to one of the most important parts of my identity, only to be unhappy with it.

I don't mind saying I'm very nervous about the 'Would you shag Danny' poll. It's actually going to be way more expansive and detailed than that, because the sex itself doesn't matter to me as much as what is behind it. Well, most of the time, anyway. Of course it'd be nice to get a few people say yes, they'd love to ride the pink toboggan, but that's less why I'm going to do it. Just because someone says yes doesn't mean I'm going to try to take them up on it, or expect them to want to follow through. My main reason for doing it is to open people and myself up more.

Emotion and intimacy is so much more than just sex, at least for me. Many people seem to want to achieve closeness through sex, I find it more satisfying to reach sex through closeness. And if I don't get to the sex, it doesn't matter. Oh I may well want it, may ache for it, may jack-off madly afterwards, but what matters more is that fleeting connection, that sense of trust, familiarity, and openness.

The dropping of barriers is more important to me than the dropping of knickers.

One of the overwhelming impressions I've gotten from the various sex posts and polls is that a lot of people actively want to talk about this stuff. What is also very interesting is those who respond. Most responses come from two distinctly different groups. There are those that are seen to be sexually promiscuous, and so it's not a surprise to anyone that these folks would reply, even if replying for them is a big deal on a personal level.

Then there are those that are quiet and shy. A sizable number of the people who reply fall into that category. It's almost like they need to be given permission to talk about sex and intimacy, and they find at least some of the permission here because I've been so open. It's occasionally surprising the level of honesty that comes out in a poll, or some subsequent comments.

The other interesting thing is, most of the people I would think of as middle-of-the-road when it comes to how uptight or relaxed about personal issues and sexuality, are the ones who tend not to participate. At all. But when comments are screened and polls can't be viewed, far more shy/sensitive people reply than the promiscuous/mid-range people combined. And they are just as open and in some ways more insightful. Many of them still delight and surprise me with their raw honesty, and given that in many of the polls only I can see who said what, I feel privileged that they can trust me with that information.

So it will especially interesting when I do the poll.

I know when the time comes that some of the people I'm dying to do it won't give me the answers I would love, if they do the poll at all. But in some cases it may at least give the opportunity to open the discussion between us. And you know, if they have absolutely no interest in spending time with me, but they can at least take my wish to spend time with them and see where it comes from, see it as the compliment to who they are as a person and what they mean to me, then it's worth it. Hell, even if they just take it as "Hey, he thinks I'm hot! I'm not interested but it's still kind of nice..." well that's something.

Even if I'm disappointed or embarrassed. Even if it hurts. It's worth it.

Just as I know that some of the people who would say that they'd love to have sex with me will find that, for whatever reason, I wouldn't/couldn't have sex with them. But it doesn't mean that I'm not genuinely moved by it. Doesn't mean I don't feel special or appreciative or honoured. Well... unless that friggin' Lameo prick does the poll. I'd slit his fuckin' throat!

Now you at least know the only person who would ever get a no from pure hatred.

And if out of the whole poll, one person that I've always wanted to talk through the night with comes back and says that they've wanted to do the same with me, even if it can never be, knowing that we each share that wish would be a wonderful thing.

Because, as I have found with love, my health, and all manner of other things... not knowing is a terrible sort of pain to endure, only beaten in intensity by learning the truth too late.

However, there is worse. There is true agony.

What is it?

It is the exact moment that you realise your last opportunity to make the truth known has come and gone, and there will never, ever be another.

My work on 100 Days, and the problems of my health, mean that while I still procrastinate and have trouble getting by my doubts and insecurities, I've found the strength to do what I need to a little more often.

I hope some of you can share in that strength.

Comments

[throughsoftair.livejournal.com]

I wouldn't want to talk with you through the night. Not right now. Not while it would exhaust you. Damned if I'd want my blather to cause you pain.

And I understand what you mean re: contact/not contact with people. You love the contact, love the togetherness, but there's a need to control and regulate it. All or nothing is too hard. At least, that's what I drew from your post, and it's how I feel pretty much all of the time.

Damn I wish we knew how to get you right again.

[dalekboy.livejournal.com]

I dunno, a lot of good has come out of being 'wrong'. I'd like not to be right again until I know some of the good stuff has stuck firm in my personality :)

[throughsoftair.livejournal.com]

Accursed English language: that's the problem with wishing 'right' upon you-- there's an assumption of 'wrong', which is not how I view you. I'd just like you to be happy and healthy and able to do what you want to without having to calculate the price you'll pay.

Mind you, I was quite fond of your personality anyway :)

And faeries in my garden. If I'm wishing for stuff I'd like faeries in my garden....

[dalekboy.livejournal.com]

Just to be clear, what I meant was that I actually feel being unwell has been a good thing in some ways.

I'm more aware of some of the ways in which I've kept myself unhappy. I don't necessarily know the way to fix those problems, but being aware of them is the first step. It's made me better at asking for help, is forcing me to open up a little more to the people I need to, given me a couple of interesting challenges and directions I wouldn't have taken had I not been unwell.

Overall, I'm still pretty happy.

[throughsoftair.livejournal.com]

I really am genuinely happy to hear that.

[dalekboy.livejournal.com]

Let's hold hands and skip through the faeries in your garden...

Kind of like dual Godzillas...

[throughsoftair.livejournal.com]

Let's hold hands and skip through the faeries in your garden... Kind of like dual Godzillas...

Or like Graeme Garden and his computer......

[kaths.livejournal.com]

I wouldn't worry about the pain meds too much - pain is a way of telling you there's something wrong, and by god you know there's something wrong and you're doing what you can about it! So why suffer needlessly?

Also, while pain meds can (not always!) dull the mind, pain dulls it more. When I'm at that point, I'm more productive and happier and clearer in the head on pain meds than off them and in a lot of pain.

Re people and energy levels - isn't the definition of an introvert someone who feels drained by contact with people, and extrovert is someone who's vitalised by it?

But of course people are a combination of both to varying extents.

[leecetheartist.livejournal.com]

I hope they find out what it is that's trying to format your hard drive. Not knowing is extrememly stressful. Have a virtual back rub!

[lilysea.livejournal.com]

I know this wasn't the response that you were after, but I just wanted to say:

you are always welcome to phone me to chat if/when you feel like it.

If it's not convenient at the time (if I have guests, or if I'm too tired) I'll let you know, but I won't be annoyed/offended. (:

Also, if my home phone is engaged, it usually means that I'm on the internet - just call my mobile and tell me to get offline. (:

[purrdence.livejournal.com]

*hugs*

[ghoath.livejournal.com]

we are easily wakable by phone and are insomniatic from time to time. You could ring us and we would make the time up somewhere. Also, don't forget that WA people are 2 hours behind so late isn't quite as late as all that.
So if you're lonely or bored or in pain or whatever, you're not alone there.

Re the pain killers. My Friend used to not like taking them either. But he found that if he didn't take them, nothing would ever happen in his life, wherease if he did, he could get on with things. He has also got into some herbal stuff which he says is better than the medication.

[purrdence.livejournal.com]

we are easily wakable by phone and are insomniatic from time to time. You could ring us and we would make the time up somewhere. Also, don't forget that WA people are 2 hours behind so late isn't quite as late as all that.

There's also the various IM programmes too.

[ghoath.livejournal.com]

also, i like the streams of conciousness. people don't do that enough on LJ, it's all so planned and staged.
People are enjoying your 100 days brcause it is about what you think, not some tempered version of the truth. there's too much sanitising on LJ these days.

Keep up the good work.

[dalekboy.livejournal.com]

Thanks sweetie :)

[dalekboy.livejournal.com]

Thanks sweetie :)

[chaosmanor.livejournal.com]

I spent a tedious day in the hospital system today, when I went in for a transfusion and was too ill to recieve it. Spent the day waiting for someone to make a treatment decision, and eventually the slave doctor persuaded a Big Name Doctor to review me.

BND looks at me, says 'You've got blah', where 'blah' is what I had thought I'd had for the past eight months, but that my own docs had been refusing to diagnose/treat. Then he makes arrangements for me to begin additional treatment next week.

For a painfully dull and miserable day, it was a stonkingly good outcome. I hope you get a diagnosis soon too.

[dalekboy.livejournal.com]

Well, at least one of us is making some headway :)

[rendragon.livejournal.com]

*hugs*

Glad you can still see the "brightness" in your life despite all the stuff trying to drag you down.

There's always an open ear and an empty inbox if you want an (almost) complete stranger to talk (or rant) to.

*hugs*

[dalekboy.livejournal.com]

Aww... thanks matey :)

Don't worry about your stranger-ness. I'm a reasonably film believer that most strangers are just friends waiting to happen.

[davidcook.livejournal.com]

It sounds like you have a similar "permission field" effect going on as bradhicks. He talks about it here.
(he also talks about many other interesting things, if you don't already follow him ... )

[dalekboy.livejournal.com]

That's the second time I've been pointed to him. I've now added the bugger :)

I'm not sure how my permission field would function. Maybe it's just cos I talk about stuff, people go "Oh, well he's talking about, so can I."

Or maybe it's more "He's talking about and no one has screamed at him, maybe I can talk about it too..."