Friday, February 26, 2010

what sport?

Grace demonstrated a great trick recently, she appeared to be practicing starts for the luge (crazy sport where you slide down ice feet first), which had me wondering what olympic sports my other kids might be suited to.

I think Sausage Boy would be best in the coxes seat of a rowing eight, he seems headed to be the kind of height, weight and build that being 55kg on race day would be a non issue, he seems to have the right kind of personality and would have no fear of handling 8 men twice his size. He also has a very healthy sense of fear, he can spot hazards and isn't afraid to override others if necessary - the cox is in charge of the crew on the water, like the captain of a ship, I have no doubt that if he felt the conditions were unsafe, that he would override a coach. He only gets anxious about a hazard if it's not his job to do something about it and even then he does as much as his role allows. One example is when Grace was playing with something he deemed unsafe, but Andrew and I were ok with, he didn't take it from her, but watched her like a hawk, ready to jump up and take action if his fears looked like coming true. Realising his fear, we did then take it from her.

An acquaintence of mine died when their boat was swamped during training, it was reported in the press, but outside of the rowing world there is minimal knowledge of the risks, few other sports put athletes on water without a flotation device in vessels that are often flawed like Titanic or worse and being low in the water, conditions can make it come over the side, getting a hole isn't the only risk. So far he seems to demonstrate a personality that would fit the role of a cox, the ability to remain in charge of a vessel even if it's not what the coach wants you to do!

He likes to win, for him, completing a puzzle is winning a game, the pleasure of completing it comes from having beaten a piece of paper, so I could see him in sports where you compete one on one, but because of his size, it would have to be one with weight divisions, like boxing or judo, I can see him being good at them, but it may well not be something we'd even let him try, he went to a karate party once and knocked the instructor to the ground as he wasn't prepared for the mix of strength and coordination that came from one of the smallest kids there. It will take discernment in future to determine if such an activity might channel aggression to a safe time and place, or multiply it.

As for Banana Girl, she's independent, any team sport would have to be one where she could still be individual, like the leg of a relay, or an individual score in gymnastics, but not group rhythmic gymnastics or synchronised swimming. At heart, she's a dancer, so looking at olympic sports, that would be figure skating or rhythmic gymnastics, but already I see her not wanting to try things she knows she can't do, but also a perfectionist streak that perhaps as she grows she might be one who practices a move over and over again.

Grace is far to young to really have any idea, but given the recent tragedy of the death of an olympic luger during training, it's not exactly something I'll be encouraging! Physically, she seems to be our only child that demonstrates any sign of the height genes that we know are lurking on both sides of the family, but I doubt she's heading to be like my aunt, just my height or a bit more. The glimmers we see of her personality suggests the opposite to the individuality Banana Girl shows. She'll be influenced by being a third child, but with the gap, she'll also get plenty of time as an only child. For now I'll settle with lightweight rower, or middle distance runner (more scope for group training than long distance).

The great thing about blogs is that this is now recorded, it's not a diary entry that I might lose, or not keep up, because there is no point, or a thought that I had and will forget about in a few weeks, it has no short term impact in what activities they do and it's not an indication of any direction we would push them, just an awareness of doors I might want to knock on for them, the main action point for now is going to be keeping an eye open for dance opportunities for Banana Girl, she's desparate to do it.

Thursday, February 11, 2010

Rough day

My body isn't functioning today, ok, maybe that is an exageration, though as far as my right hand and forearm were concerned for an hour or so this morning it was true, quite literally, I've no idea what happened, no specific pain, but it's range of motion and strength reduced to about 10% of normal. I could hook the handle of my insulating mug over my hand, but not grip it with my thumb, I could lift my hand to my mouth, but not angle it so the spout was in the right place.

There is obviously something not right, I started typing this pain free and it's ramping up, though just at this moment in time function is actually pretty good, though I notice more errors are appearing and surprise surprise, they are coming from the right side of the keyboard.

I've had a gentle twinge in my forearm for months, it didn't get worse, it didn't get better, so I ignored it, not conciously, it just hasn't been a big deal, looking back, I realise there has been low grade pain from about September and on occasion, when I've gripped something hard, there has been a short sharp spike of extreme pain, but it's never even repeated once the dropped item has been caught and I try again.

The only hand/arm specialists I know of are all in the group that got dropped from our insurance, one of them got to the bottom of my 10 year wrist problem in about 10 minutes, so I'd like go back to him - if I can remember his name! It's probably worth paying the out of network rates if there isn't anyone local who's in network, going into Seattle is such a big job paying our percentage for a consult is pretty reasonable.

But it's not just this, which is just an added bonus struggle, my body just isn't coping with the physical demands of 3 children, particularly when one is a crawling baby. I really need to put some time in to physical therapy, or at least private pilates, a weekly session of hydrotherapy would probably be helpful too, along with a massage to nurse my body through it.

However, the logistics of that are overwhelming, I could get a reasonable attempt at all that at our gym, which has daycare facilities, I'd have to see a PT there to get the sessions in the pool, but right now there isn't a PT there who I feel confident working with. There is a fantastic pilates instructor, but he's difficult to get in with and definitely not at a convenient time and we'd have to pay for that. The massage therapist that seems to help me most also isn't there, so up pops the childcare issue, again.

Even if I did do everything there, going there 3-4 times a week and having to physially deal with getting each child in the right place is just not realistic right now. Twelve weeks doing that would probably make a huge difference to my physical condition, which for the past three months or so seems to be what has been the biggest factor in life management, it wouldn't fix me, but hopefully it could at least get me to a place where physically managing life is a possibility.

It feels wrong to be complaining about this, when comparing now to four years ago, when I could barely walk and couldn't even use crutches to help because my hands and shoulders wouldn't cooperate. Pain and function now are so much better than then. Back then, the children didn't make much difference, my difficulties were so significant that removing the children from the scenario would have still left me unable to care for myself, not being able to carry your baby is almost an irrelevant details if you can't actually walk to start off with!

Now, it feels like if you were to take the children away, then physically I could cope and I'd be free to take the time to improve and hopefully maintain, I'd be miserable without them, but there is no way anyone would consider my physical condition to be a disability, whereas 4 years ago, I was disabled, trying to care for two children made it harder, but remove them and I'd have still needed a wheelchair, adaptations in the house, etc.

I don't think I'm expressing myself well, I suppose it's like a sports person, you can have an injury that stops your career and takes time to rehab to live a relatively normal life, or you can have an injury that not only ends your career, but makes normal life challenging too. I'm in the first category, but instead of stopping my career, I'm muddling my way through it, doing very badly because my career is my children and thankfully they don't go away but because my body isn't keeping up with what's required of it I'm placing demands on others to fill in the gap, yet also it looks like (and feels like) I'm neglecting them. If I push myself harder, I don't just suffer more, which hard though that is, it is possible (anything is possible with God!), but it isn't just pain or exhaustion, it becomes muscle failure and being unsafe. Sometimes I can't get up off the floor, not because it's painful, I just can't, I can usually trying something else, or grab on to something, I don't worry about it, I don't have fear, but it happens, same with many other things. Plus, pain is distracting, what I have right now is nothing like childbirth, but even someone who copes very well with childbirth can't do that and drive a car at the same time.

I don't want to get into a mentality of trying to fix my body and thinking life will be hunky dory, but right now my body is teetering on the edge of making life unsafe or putting demands upon my husband that there aren't enough hours in the day for him to meet.

Tuesday, February 9, 2010


I've suddenly found myself with a cot next to my bed, not really what I expected. We tried moving Grace into the spare room at Christmas time as she was making noises that were keeping me awake. Andrew was bed hopping in the aim of someone waking up before she really had to scream, she was still in her cosleeper and the last couple of weeks we've been really pushing the limit as to whether that was safe, so last night, out came the cot - which meant we had to decide where to put it.

Long term, it will probably go in with the other kids, our house layout works best with their bedroom being only for sleeping (we don't even store current clothes in there), so we can stack a few more kids in there, but she's waking too much to risk that just yet. There isn't space for it in the spare room whilst also preserving access to other things, plus Andrew views the spare room experiment as a failure, so it's back to our bedroom.

Last night was fine, it's oddly positioned, but by keeping the drop side down I can sit up and lift her in and out without injurying bits of me. Daytime naps might not work so well, our windows are south facing and on a sunny day a lot of light gets around the shutters, which are also annoyingly difficult to close, so we've long since adapted to sleeping with them open. Not that daytime naps were working fantastically well anyway!

It seems close to impossible to truly baby proof any section of the house, but that doesn't really seem to matter - if she won't let you go out of her sight, then she's never out of ours! Which buys us a little more time, it's mostly the other kids' toys that are the issue, but bins also seem to be a fascination.

Friday, February 5, 2010

The spoon theory

I read The Spoon Theory a few years ago, it makes sense, but I also didn't want to accept that my life at that time was an exercise in spoon theory and not one where I was making good decisions about what to use my spoons on.

Does anyone really live life with an infinite supply of spoons? Maybe they do, but the last time I felt like that must have been as a teenager. There have been periods of time since then where I've had a lot of spoons. The past couple of months it seems like I've deteriorated pretty quickly into very few spoons, so few that I've not really had any spare until the past week or so to actually think about where and when they went missing, it seems to me that swine flu was a major contributer, exhaustion and fatigue seem to have been out of control since then, particularly as sleep no longer seems to refresh.

Pain is up and down, my hip had a very unhappy January, but other than the 1st, February seems to be better and right now fatigue is massively more restricting than pain or stiffness, which I think just indicates quite how big a problem fatigue has become, considering that even very basic things like holding a cup of tea are painful.

I loved this comment from the spoon theory page, not just that some people have tablespoons and others have ladles, but that those of us that have tablespoons get grief for our best not being good enough. The whole thing is so hard to explain that I feel like few if any people understand my life in a world of smaller or reduced spoons and it doesn't help that I feel embarassed to say it. My depression will heal and I hope and pray that there will be times when the spoons are less limited. Narcolepsy is like Parkinson's, it gets worse, most sources say there are about 40 years of deterioration before some kind of stability. EDS just is, but there will probably be more unusual injuries and rehabs along with joint replacements, but what won't change is how many basic tasks take many times the usual amount of energy because my muscles don't just have to do the task, but also have to guard all the joints potentially displaced by the process. I just picked Grace up, not a big deal on the major muscle groups, she's only 15lb, but that was 15lb that also needed to be prevented from bending my fingers and wrists back to the point of pain or dropping her. Anyway, here's that quote...

When I saw the title Spoon Theory, I thought of an exercise from when I was training to be a volunteer counselor for survivors of sexual violence. The group of trainees was divided into two teams. Each team got a utensil and as many beans as they wanted. The idea was a relay to see who could get the most beans into a bucket at the other side of the room. The other team got a ladle, I got a tablespoon. Then as I'm trying to balance as many dried beans as possible on a tablespoon the trainer starts telling me what a bad job I'm doing compared to the woman with the ladle. But she does not acknowledge that I've got a spoon and the other team has a ladle.

This was an important moment for me because it felt exactly how many people treated me after I developed severe migraines and eventually an unrelated mental illness. When I spoke about this after the exercise the trainer told me this is what oppression feels like.

I love your spoon theory because it gets to the heart of what a disability requires, and I love my spoon story because it shows what it feels like to live in a world that often does not acknowledge our effort.