Today I’m feeling miserable and in pain and in need of a serious vent, and hey, I have a platform that I can use, and I use it to educate about my life with EDS, so this seemed the perfect place to vent.
Yesterday I was walking to an appointment and I tripped over some tire spikes in the road, and nearly landed flat on my face. Luckily, I caught myself, and instead landed on my knee and both wrists. I was able to get up afterwards, nothing was broken, but the pain just has gotten worse since then.
By the time I went to bed last night, my knee was screaming, my pelvis was clearly out of place because the jolt to my knee radiated up my leg and shoved my pelvis hard, both wrists hurt, both elbows hurt, both shoulders hurt, and my nerves in my arms were misfiring sending electric jolts and uncomfortable sensations down my arm. Oh, and my ankle was hurting too.
The “funnest” part about this was that my knee and shoulder had just stopped hurting so much after an injury from hydrotherapy 2 months ago, and now I get to start that cycle again.
And I had just been at physical therapy two days ago, and had another appointment scheduled for another 5 days from then, which wasn’t enough with my body like it is.
So today, after taking a 25 minute boiling shower to try to soothe my screaming muscles, I drove to physical therapy, where my physical therapist moved my pelvis back into place (and it was out enough that she needed to try three times to put it back into place because it wasn’t cooperating). She then checked my arms and shoulders to see that nothing was subluxed, and then worked on my spine which was jolted from the fall and was therefore putting pressure on my nerves.
Driving was painful both because of my knee and because lifting my arms to steering wheel height was painful.
I got home and crashed for 3 hours from pain because the pain, the shock, the I don’t know what took a huge toll on me.
And now, even when I’m not doing anything, I am aching. My neck and head especially (guess I got whiplash too) and I can’t lift my arms at all. Fortunately I can bend my elbows to lift my hands to the computer but not my upper arms at all.
Anyhow, this is just the precurser. Because yesterday, when I got home after my injury, I wrote a vent about what life is like with EDS, and that even though I talk about it a lot, there’s a lot of emotional baggage behind it too. I wanted to share it here.
Physical pain is horrible; any chronic pain can be incredibly debilitating and I am not taking away from that struggle from people who deal with that.
But there are some struggles that are unique to people with EDS.
When I’m in pain, a good percentage of the time, it is because my pelvis moves out of place, or my vertebrae move out of place. My joints don’t work as they should, and when my bones move out of place, it causes my whole body to get messed up. Muscles spasm because they’re being pushed on by bones that shouldn’t be there. Their spasming ends up pulling other joints out of place, which makes more muscles spasm.
So for me, when something goes out of place, it is not just a painful muscle. It is something seriously wrong causing further damage, and the longer it stays out of place, the more damage it causes. Rest doesn’t fix it. There is only one way for me to fix the situation, and that is paying a ton of money to a professional to push my bones back into place.
I’ve literally spent over $15,000 over the past five years because things have been “out of place,” and that’s the only way to deal with it.
My bones going out of place easily is something that literally affects my whole life. It affects how I walk. It affects how I get around. It affects even the tiniest little movements.
I can’t mop the floor because the twisting motion pushes my bones out of place. I can’t push a shopping cart without worrying that if it’s a little too heavy or the wheels don’t move right one time, it’ll pull my pelvis out of place. I can’t sit on a bus or train seat without needing to be extra careful to sit exactly so, so that nothing is pressing into my bottom because that is enough to push my joints out of place. I took the bus today, and my legs were somewhat to the side, and it caused me a lot of anxiety because just sitting like that is enough to mess my body up. I needed to buy an expensive car and spend a ton of money on it monthly to run it—for gas, to fix it—because I literally get injured on public transportation which causes my bones to move out of place.
I’ve given up on so many things that I wish I could do in life because my bones won’t stay in one place. I can’t ice skate. I can’t ski. I can’t go on so many different amusement park rides. I can’t build things with my hands. I can’t do catering even though I loved it so much. And the foraging classes I love teaching- it is the reason that I don’t teach too many classes these days, because of the toll it takes on my body.
And again, the anxiety. The anxiety that when I fall, I don’t know if I’m going to be permanently damaged or just how much the damage will be. When I slip on a bit of water, that is enough to injure me—even if I don’t fall, just my leg slipping two inches can sublux my pelvis. When I take a step wrong, what will be wrong this time? When I am on public transportation or even a taxi or any car that’s not my own, there’s this constant undercurrent of what might possibly happen if I don’t hold my body exactly right.
Just today, I was walking and tripped over something sticking out of the ground and landed with a jolt on my knee and two hands. That jolt on my knee pushed my pelvis out of place, and now my lower back and side are already rebelling. And my knee is hurting me to move it, after it just started hurting less after three months of rest after the last injury. And my shoulder is hurting me again, after it finally started feeling better. And as I was falling down, in those few split seconds as the ground was rushing towards me, I was terrified about what issues I’d be dealing with now as a result of my fall.
The uncertainty, the fear of permanent damage from something as small as a misstep—it’s mentally and emotionally exhausting.
And it’s not just my bones going out of place that is the issue.
My bones going out of place is part of the bigger picture of EDS, the syndrome that screws over my life in so many ways.
EDS is the reason that I don’t heal well.
It is the reason that I fell down ice skating five years ago, and my muscles there have never stopped spasming.
It is the reason that I have permanent degradation of my sacroiliac joint.
It is the reason that when I hit my knee when swimming three months ago, it still hurts me to bend my knee now.
It is the reason that my eyesight keeps getting worse and worse, and they don’t know how to stop it.
It is the reason for my constant stomach issues.
It is the reason my skin rips.
It is the reason I get dizzy so much and am constantly exhausted.
It’s the reason I am constantly falling and hitting into things, injuring myself further—because my proprioception is messed up, as is my balance.
It is the reason my pregnancies were hellacious and caused me lots of trauma.
And this is just the tiniest little bit. It is the reason my mouth hurts, my jaw hurts, my ears hurt, etc.
And I passed it on to my kids too. So it’s not just my suffering. It’s the reason my daughter Rose often cries in extreme pain. It’s the reason why my son Ike broke so many bones. And it’s the knowledge that my kids will likely have varying levels of disability as they grow up.
All this… it’s hard to explain to people each time I explain my EDS issues to them. “My joints don’t work and hold my bones in place” is just the teeniest tiniest little sliver of what my life is actually like. And most people don’t have the patience to hear more. But I just felt the need to share this part of my life. The emotional toll.
