dalekboy (dalekboy) wrote,

100 days of Love and Hate - Day 50

Specifically, my current health. 15 bloodtests later and we have results... all normal. No thyroid, iron, folate, B12, red blood cell, or any other problems... So now we've made an appointment with a specialist... for February! Nearly three months away. Another three friggin' months of this. Needless to say, we will be looking at more testing and the like in the meantime, but still... three months.

I'm still able to do a bit, my mind still works, and generally I'm using it to my benefit and catching up with a few of the shows I've wanted to watch. I generally put a good face on most of this because, well, I'm actually kind of ok with it.

Most of the time.

It's impacted on my life fairly significantly, I have to juggle and ration out what I do on a day-by-day basis, but that's ok. Hell, some days I have to ration on an hour-by-hour basis. But I'm still achieving small amounts every day, so I can feel fairly chipper and stave off depression.

Most of the time.

I'm not in any pain. Well, that's not strictly true, since about 6 weeks back I started getting pains in my legs. Like the balance issues, no rhyme or reason to it. Some days my legs will be fine, other days they'll ache a bit, other days they are two lumps of constant pain, though only bad enough to distrupt my sleep and to tire me out. But overall, I'm not in any pain.

Most of the time.

As I've complained before, there are folks who've actually told me to stop being so cheerful about it, folks that constantly tell me how terrible it is. It's not terrible. Terrible is a five year old kid with cancer. Terrible is constant agony. Terrible is Alzheimer's. What's going on with me is more terrible for my friends and family than it is for me. I'm not putting on a brave face, I'm a realist - bitching and moaning about it and getting upset not only won't help me - and that's also not who I am. I'm a genuinely happy person.

Most of the time.

Every now and then it all catches up. All that I'm not getting done, all that I can't consistently do, it overwhelms me. And then, for just a little while, the anger and the self-pity and the 'unfairness' of it all take over.

I got angry at Sharon the other day. She kept putting off a bunch of small jobs to sit on the computer and read. It was a bright sunny day. What I was angry about was that she had these jobs to do and was physically capable of doing them! And I would have killed to be able to swap bodies with her, to be able to approach a bunch of jobs knowing that I could achieve a decent amount of what I set out to do. I keep looking at the huge piles of stuff to sort, that need my eye and attention, that I'm usually only getting through in 15-30 minutes chunks per fucking day, and I would kill to be able to have a full day where I was able to just work solidly. If I get a full hour or more, I'm feeling blessed.

I'm not only living in a new city, but it's a city with a lot of things I want to check out and explore. It's not happening. Because while most days I can drive, the issue is that by the time I actually get to where I'm going, I'll nearly be ready to come home. When I leave, the walk to the car will feel like miles and then I have the issue of making sure I'm actually okay to drive back. So I'm not learning Canberra's roads and layout at all.

Buses are fine, buses are good, I like buses. But I still have the issue of getting to the bus stop, getting from the stop to my destination, and getting back again. I didn't do it last week, but most weeks since arriving I've taken mum into Belconnen on the bus, pushing myself all the way to my limits in the process. It means I achieve nothing else for the day, but I get mum and I out of the house.

One of the issues I have with those people who keep telling me how terrible it is, is that if I listen to them I'm going to start to define myself by their perceptions of what I can't do. Last week on the walk to Kaleen shops with mum, I saw a 'something' up a tree. A weird, very big bird's nest or a weird, chunk of tree growth, I didn't know which. On the way back, exhausted as I was, I climbed the tree next to it. I thought about not doing it, but fuck it, I don't want to be limited by what I shouldn't do. Climbing the tree wouldn't wear me out significantly more than the walk already had. I couldn't get up high enough thanks to too many branches blocking my way top get a good look, but it was nice up the tree :)

I understand that the people finding it terrible are distressed by my situation. They are used to bouncing-off-the-walls Danny, Danny who will do physically exhausting and over-the-top stuff to get a laugh. I've heard the pain in their voices when they say it's awful to see me like this. And I feel for them. But being told constantly how terrible it is just gives me something else I have to fight.

I'm still me. I'm still enjoying myself immensely.

Most of the time.

Before the move I broke down in dad's shed. I wasn't coping with all that had to be done, was falling apart emotionally and felt like I was falling apart physically. There was so much to do and I couldn't do it. That fact that, after I get some sorting done, a handful of emails answered, I generally have to choose whether I do a 100 Days post or a Skeletor/Hordak really sucks.

So yes, I do hate this. I hate it totally. I hate that it's stopped me from doing Santa this year. Hate that I can't just go out and grab a job, because on any given day I won't know if I can get to work. Hate that in our last months together an awful lot of the sex I had with Kali was her on top, because dammit, there were days I just wanted to pound her, which I know we both would have appreciated, but I was too stuffed. Hate that I'm so close to the bush but have to consider how I'm feeling before I'd even think of driving off on my own. Hate that I've walked such a tiny fraction of my new neighbourhood.

But hating it isn't going to get me anywhere, so I may as well fully enjoy the stuff I can enjoy. I'm lucky in that my highs are so very, very high, and so easily achieved. Contact with the right person, seeing an interesting bug or bird, finding out something funny or cool... the joy I get from these things is real and immense.

In all seriousness, we don't know what is wrong with me. That they haven't found anything that is life-threatening doesn't stop us from occasionally wondering if I'm going to be around in a year's time. In all honestly, I suspect I'll be around for a long time to come yet. But we have no way of knowing. And no way of knowing what my quality of life will be like.

This is where 100 Days has become important. As I said in my love post, I love people deeply. Strangers like acquaintances, acquaintances like friends, friends like lovers and family. I know a lot of people, and there's been a lot of you I've always wanted to get to know much, much better. But I'm part hermit, and when I'm not holed up in my cave, swearing at random strangers and wanting most of humanity to either wake up to itself or just fucking die, I'm hanging with huge crowds of people, not getting enough time with any of them.

I fucking hate what's happening to me. If we had a name for it, knew whether it could be cured, stabilised, get worse or kill me, I'd still hate it, but it'd be a massive improvement. I'd know where I stand.

But giving some of the people who mean something to me a chance to really know me is something I can do. If I can make people think about things from a new perspective, give them an insight into myself, help a couple of guys and gals say "bloody hell, it's not just me" or "Oh wow, I'm not the only one who has felt this way" then I can face whatever comes because I've gotten off my arse and done something.

I've had two separate people who needed someone to talk to and turned to me because of 100 Days, and that makes opening myself, sometimes quite painfully in public, more than worth it. It was totally exhausting both times and I don't care a jot, I'd do it again without hesitation. I don't know if I was able to help, but at least I gave them someone to talk to, and that's often a good first step.

Maybe it's insecurity, maybe it's ego, but I don't want to fade from the world not knowing many of you and to have many of you not know me. The stuff I talk about on here is the same stuff I'd talk about to 97.253% of you if it came up in conversation. For many of you, it would never come up in conversation for a variety of reasons. For some of you, you don't want to read these opinions, especially the more personal, intimate admissions. For some, it's too much information, too raw and open. You don't want to know that I pick my nose, masturbate regularly, or that I spend whole days on the verge of tears because of what's going on, health-wise and emotionally.

Fair enough.

It makes you uncomfortable, makes you ask why I'm doing it. I'll tell you why I'm doing it - it's all me - and my preference has always been to be fully open and honest, regardless. Even if it opens me to ridicule.

The funny ranting side; the side that would kill for a gentle, loving blowjob right now; the part that wants to help people; the part that thinks fandom is full or the most marvelous people and some of the lowest arseholes you'll ever meet; the side that creates; is interested in sex and porn from academic and historical as well as pervy perspectives; the part that loves Doctor Who; the side that lets me think about how to help people and improve things; the side that will tear apart those that stand against me and bathe in their blood... It's all me.

It's all those little parts that you don't get to see that make the person you know, whether you like me, love me, loathe me or hate me. I want people to get the full picture. Some of you have grown more distant because of it, but some have grown closer to me, and even found someone to at last open up to, or a reason to open up - "He's doing it, I can do it too."

The other thing is this - when it comes to health or emotional issues - talking about it on here is as close as I'm ever likely to get to asking for help, pity, cuddles, sex, understanding, support or anything else. I have real problems asking for things, even from the people I know I can ask. Even from Sharon. Not because I'm proud, though I can be, but because I forget that I may actually need help, and I'm no good at asking because I don't want to impose. And even if I'm offered help in regards to this, I'll still automatically say, "No, I'm right, but thanks."

I'm sick. Sometimes it worries me, but not often. But my health doesn't define me and I'll be damned if I ever quietly fade away.

It's why I write 100 Days, so you know who I am, regardless of whether you like that person.

It's why I write even when what I'm writing about hurts me, makes me cringe, re-opens old wounds, and makes me cry.

It's why I climbed that tree last week.

Okay, it may be boring and predictable, but strangely, I don't hate Sharon. Yeah I know, not one of those surprises that I sometimes pull out with a 100 Days. The closest I can come to a hate rant is that she insists on not letting herself be as amazing as she has the potential to be. But on the plus side, she is slowly starting to realise some of that potential, which just makes her rock so much more. And she was already pretty rockin'.

I thought about writing about Shaz while I was in Melbourne, but decided I wanted to be back in her presence when I wrote this one. She's wonderful but the problem with writing about her is there's not a lot I can say. I feel a lot, but that's harder to put into words.

One of the great things about Sharon is her compassion. She doesn't like to see people hurt or ripped off. She's ready to help out complete strangers because they need it. Her feeling good about it is only a bonus. When mum had a fall a while back, she had no hesitation in being willing to move in with her. She didn't want to lose our privacy, but could see it was the best option. In fact, when I brought the concept up, she'd already been thinking about it for a while.

Me, I fell in love with her brain. Sharon is one of those folks who, when she gets something new, will read the entire manual. In fact, she does it at work too. So in a office where some people have worked with the same photocopier for 4 years, she's blown them away by making it do useful things they've never managed. She's good with both computers and people, and especially good with teaching people to use their PC's, something she has done for a few of her workmates... including one woman who kept her computer in the wardrobe because she didn't know what to do with it. An evening or two with Sharon, and she was surfing the net and discovering just how much you could do on a computer.

She has a really keen mind and a lot of untapped talent. It's a side of her I love and that she doesn't let out nearly often enough. Getting her to start an LJ was a major triumph. I knew that people would like to hear from her, and enjoy her writing, but convincing her of that took some doing. She consistently gets a good run of comments to her posts. Not because people like her, though that helps, but because at times she's a bloody good writer. I live with her and I look forward to her next post. I'm often amazed at how well she puts words and concepts together in a way that makes them funny.

She's patient. She has to be to live with me and my mother.

Sharon's organised in ways I can only dream of being, in my little, anal-retentive heart.

She's sexy. Damned sexy. Criminally sexy for someone with so little actual desire for sex. She moves well, carries herself nicely, and has a nice body. And her breasts are both as silky smooth to the touch as they are magnificent to behold!

I had a few long-term partners before her, but she was the one where marriage felt right. Where it was more than just a conceptual thing that came out of 'we get along well, maybe we'll get married,' which I alwasys hated. After years of being friends and then partners, I suddenly knew I wanted to spend the rest of my life with her. In that time we've had our ups and downs, but we survived the worst by knowing it's worth the effort, both within ourselves and occasionally by having Kali give us a kick in the arse to remind us that what we have really is special, even when we can't see it.

Thing about Sharon is, I enjoy spending time with her. It's hard not to like her. When things are good between us they are wonderful, amazing, special. She's an awesome woman to be around. When things aren't good between us, she's still comfortable to be with because we're still friends as well as husband and wife. We have an honesty that borders on brutal, but it works for us. I love snuggling up in bed with her, the nights when she comes to bed at the same time as me, or shortly after, are gorgeous. Of course she tends to give off a lot of heat, so I can't stay cuddled up to her for long, but I enjoy the time I get holding her and being held.

She's generous and loving and while I've been unwell, she's never once made me feel bad for not achieving stuff, though she hasn't been able to stop me from beating myself up over it :)

She's my wife. She's fabulous.

She's Sharon :)
Tags: love & hate, rants, serious thoughts

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  • Still Alive Ten Years On

    So today marks the 10th anniversary, of the first day, of the two-week long basilar migraine that gave me a stroke equivalent. That took ten months…

  • Belated April Health Update

    This year I didn't manage my usual yearly post-stroke health update around April, mostly because I was running around madly and then caught the…

  • I'm not dead!

    Just still licking my wounds after last year. For those that don't remember, a whole bunch of people I knew died, some were acquaintances, some…