Vacation, and Recovery...

I went on vacation for a week. All the way to Vancouver. And it was AWESOME!

Firstly, on the drive there, we'd stop the car every hour or so to get out and stretch, so we wouldn't be too stiff when we got there. About halfway there, I stretched my hips and back to the point where for the first time in FIFTEEN YEARS I was able to touch my toes. I know that's one of the nine possible points on the Beighton scale, and I used to be able to do it easily, but after years of "pain avoidance" and tight muscles, I lost the flexibility in my lower back. Apparently 5 minutes of stretching repeated throughout the day is all I needed to touch my toes... Yay me!

Next, there was the concert. Also AWESOME!!! I saw Rammstein! And they blew up EVERYTHING. Seriously, fire, fire everywhere, and I'm glad our seats were as far back as they were, or else I don't think I could have handled the heat.

After that, there was walking. Lots of walking. I walked until I got a blister, then I walked some more, and kept walking until my hip suddenly decided it'd had enough... Then it was bed rest for the next day and a half, and walking with my cane on the one trip we had to take.

After that, we went to Osoyoos, and attempted a swim in the lake... Which was stupid, because it's way too early in the season, and the water is incredibly frigid... But our hotel had a pool, and we took full advantage of it. Which brings up an odd point... During everyday activities, my left shoulder is mostly useless, and my right shoulder is mostly fine. In water, my right shoulder is almost useless, and my left is mostly fine... I found it odd... Swimming around, and it's the pain in my right shoulder which makes me stop.

Through all of this, I found that being at sea level, with all the extra oxygen makes it so much easier for me to breathe while I'm exerting myself (and when I'm not). I didn't have any problems catching my breath walking up hills, or over long distances, like I usually do. And something else about Vancouver, whether it's the weather, or being at sea level, or the humidity, my pain levels were so low. Practically non-existent. And when things did hurt, they healed a lot faster too. The hip pain from over-exertion took a day and a half to heal, and I've had similar injuries before which have taken weeks to even start to feel better.

Now on to the recovery portion... Made it back to Calgary in one piece, but I fell asleep in the car, and really tweaked my neck. It's been six full days of agonizing neck pain, with really stiff muscles. And my left shoulder is seriously annoying the crap out of me right now. Oh, and inexplicably, my twitching and falling have made a comeback.

And the best part? We're moving over the next couple of weeks.

Awareness Month

May is EDS awareness month.

I would like to make you all aware of some hard truths about EDS.

EDS causes its sufferers to be in pain. But that doesn't say much, does it? If you stub your toe on a coffee table, you are in pain. This is nothing like that. The pain caused by EDS is comparable to getting hit by a car. Every day. For the majority of your life.

The pain of EDS is also comparable to what was experienced by those unfortunate enough to have been chained to a medieval torture device, the Rack.

The pain of EDS is often misdiagnosed as Fibromyalgia (FM/FMS) - which is all-over muscle and connective tissue pain. In many places, FMS is a recognized disability, whereas EDS is usually not.

The pain of EDS, for some, is so great, and so poorly managed, that they feel their only choice is to end their life.

I know of one person who has committed suicide as a direct result of the pain caused by EDS. She was diagnosed, and her pain was being "treated" by doctors.

I have been suicidal myself, due to the pain from dislocated joints, overworked muscles, worn out joints, and the endless fatigue caused by the pain. The pain I am in caused me to become depressed to the point where I honestly couldn't care if I lived or died. I didn't see myself as having a life worth living, if I was to be in that much pain, every day, for the rest of my life. Thankfully, I met a nice person who had worked through similar issues, and he was able to talk me down (literally) from my ledge.

I read a letter today, written by a lady with EDS. In it, she expressed her lack of caring. She isn't to the point where she will actively take her own life (I hope), but she is passively allowing herself to die. She can no longer swallow liquids, so she will dehydrate to the point of death in a few days. Do you know why? The ER doc she saw didn't prescribe her pain meds. Medication she has been dependant on for years to have even the slightest semblance of a normal life. Medications which could kill you if stopped abruptly.

If we had more awareness, this could have been avoided. If we had more awareness, we would have more compassion.

If we had more awareness, we wouldn't need to suffer this life-sucking pain, or be called drug-seekers, just because we need more  medication for our chronic, unrelenting pain, than other people of a similar age/weight/sex would need for their "stubbed toe" pain.

So please, PLEASE, spread some awareness, so those that come after may be treated better than we have been.

Hugs, and I hope you all are as well as you can be.