One of the barriers I deal with are chronic health issues. I have always hesitated mentioning this in public, because I don't want people to assume I can't do. I want to be able to read my body and decide what I can and can't do. Lately, though, I have been struggling, and struggling does effect my art and my production. Not just blog posts, but also performing, creating stop mo videos....even writing. When you spend all your energy getting to work, making it through the day, then getting home, you just don't always have enough left to create.
I don't see a whole lot online dealing with this....how to keep doing even when your body is rebelling. So I decided to start working through this on this blog. I don't think anyone really reads this anyway, so for the immediate it is a safe space. Eventually if people to read it, I will have to be ok with people knowing the struggle.
After years of struggling with energy, joint pain and other issues, I was finally diagnosed. 3 years ago I got my butt into a rheumatologist, who did all the necessary tests and exams and declared I have Joint Hypermobility Syndrome. Finally, a name to go with this. And finally, issues I have been struggling with since childhood make sense. My mother and doctors liked to tell me it was in my head, I was being lazy, or other dismissive things. I tried hard to get someone on my side, but really didn't succeeed.
So what is Joint Hypermobility Syndrome? Well, Joint Hypermobility in and of itself is easy to figure out. It is also known as being double jointed. It just means that you joints move in ways most people's don't. It sometimes effects all your joints, sometimes it just effects a few. For me, as a kid I was able to stand with my legs straight, bend at the waist and rest my head on the ground. My hands could be pushed back to lay flat against my arm. My thumbs would go all the way back. And without holding them I could leave them back and pull the tip of my thumb forward. This is not uncommon in children. I believe they estimate it effects about 10% of the population. My mom's side of the family didn't seem to have this, but what little time I spent with my cousins on my dad's side, it seemed pretty common among the cousins.
Joint Hypermobility Syndrome is when it goes to an extreme, causeing pain and issues. Regular joint hypermobility can turn into the syndrome if there are regular injuries to certain joints in a hypermobile child. According to my doctor, there is a genetic propensity towards moving tome hypmobility to the syndrome.
As a kid I seemed to injure my joints easily. The first time I tried skiing when I was 12, I tore a ligament in my knee. In normal joints, what I did may have been a light sprain at most. I ended up in a knee brace for 6 weeks. The kind that goes from the upper thigh down to the ankle, and does not allow your knee to bend. There are other signs I was dealing with the syndrome as a kid.
But anyway the regular Joint Hypermobility usually goes away as the kid gets older. Past 25 the joints just naturally start tightening. When it is Joint Hypermobility Syndrome, that does not necessarily help. Especially in joints that are injured, or repeatedly injured. It can effect all joints or only very specific ones.
By the time I went to the rhuematologist, I had face planted several times injuring my wrist and arm, because randomly my ankle joints would decide to stop holding my ankles together. One of the times I was just standing there and ended up on the ground. When I was 21 I stepped in a deep hole and broke my left ankle. Then I kept reinjuring it, tripping on it getting out of my van, or missing a stair. My right ankle kept getting sprained for stupid little things as well. Finally when I was 33 I was on a date and walking on the bike trail, and I missed the edge of the trail and ended up with my right foot half way on the pavement and halfway in the mud next to it, which majorly injured the ligaments and tendons. I was in a stablizing boot for 4 months. By the time I lost my insurance they were discussing surgery to put screws and rods in to keep it together.
As a kid, I had major issues with balance, which is common when the joints aren't holding together correctly. When there is too much stretchy, no amount of muscle tone will be able to hold you up. I had a major issue with heights, which in retrospect I wonder if it was because I didn't know if I was going to lose my balance unexpectedly and fall. As a teenager, my hips started painfully popping out of joint. Without doing xrays (why I have no idea) the doctor decided that it was a remnant of having hip dysplasia as a baby, and sent me to physical therapy to train my muscles to hold my hips sockets together around the mis-shape. It did not help a whole lot. I stopped being able to ride a bike, cause every time I did my hips popped out of joint. For the next 20 years my hips would randomly pop out of joint, and I couldn't get them to pop back in. I would just have to lay down on a flat surface and wait for them to decide it was ok to go home.
The point of all that is to explain which of my joints are effected by this Joint Hypermobility Syndrome. I am also having issues with my toes, as my whole life every time I stubbed one it would pop out of joint. I have had issues with my hands as well. Mainly that is the main joint where the fingers attach to the fleshy part of the hand. I have been slowly losing strength. I can hardly grip some days. And some days they randomly decide to stop holding whatever it is I have in my hand. I will be standing there talking to someone and whatever is in my hand drops. This has been an issue in my music. I can no longer play mandolin, as I don't have the strength to hold down the stiff metal strings. I have switched to ukulele, which is much easier to grip and the nylon strings are more fogiving. I have always had issues with fine motor control. I have tried drawing, but I just don't have the control needed to make the lines do what I want.
There is a lot to Joint Hypermobility Syndrome (JHS). If you really want to learn what it entails, here is a link to a paper a doctor in Washington wrote to help his patients explain it. Not all of it applies, but a lot if it does. If you are curious, my Beighton score is 6 (out of a possible 8, 4 for each side).
JHS effects more than just the joints. It causes pain, yes, but it also causes digestive issues, etc, that are not fun to deal with. When I am having a bad pain day, everything hurts as well as having the additional digestive issues. At this point, there is no longer anyone here in Eugene who can help me with this issue. There was 1 rhuematologist who knows anytthing about it, the one who diagnosed it, and heis no longer here. There are no physical therapists who know how to help me get fit without making the joints worse. At the moment I take it one day at a time. I pay attention to where my body is at, and do when I can, don't when I can't.
Lately it has gotten worse. My left hip is still randomly popping out, but it no longer is days or weeks between. I can be fine when I leave my cubie at work to head to the bathroom, and not be ok half way there. As a result I now carry a cane everywhere. Doesn't take away the pain or make it pop back in, but it does help me take some of the weight off it so I can continue to walk. I have to wear lace up boots whenever I leave the house, because I have the same issues with the ankles. This week they have decided they are going to quit anyway. It feels like someone has inserted rocks into my ankles.
So what I am trying to do now is balance my health issues with my need to preform and create. Right now I don't own a car, and the bus stop is 1/2 a mile form my house. On a bad pain day it takes everything I have to get to work, make it through the whole day, make it home. Some days I get home, drop on the couch and can't move. I am literally going on momentum, and once that is gone there is no more. Usually it takes several hours before I can even get up and get myself dinner. Generally I grab a piece of bread and go to bed.
So with the unpredictability of this condition, how do I keep doing? How do I commit to a performance, when I don't know if I will be able to make it to the venue, much less make it through a performance? Sometimes when it is that bad my brain just shuts down. It is hard to be creative when that happens. How to I keep myself going?
Well, that is pretty much it. How? What do other people do? This week is better than last. I am in pain, but I can move and relatively energetic. But what about next? I need to figure out how to work around this. I do not accept that I have to just quit trying.