Dishes or Laundry?

Unfortunately, that is a question I ask myself more often than I care to admit. Do I do the dishes, because I haven't any clean ones left, or do I do the laundry, because I've worn my shirts twice each, and I'm dangerously low on clean undies? (TMI?) Either way, after my very rushed shower, there is only enough hot water left for one of these things. There is also only enough upper body strength to do one of these things.

Yesterday, I decided it was time to do the dishes. They were stacked in both the sinks, on top of half of my counter and all over the stove top. So I filled both of the sinks, and started soaking things. There were dishes from my gramma's rhubarb pie that she'd sent me, and no matter how much you soak them, they never want to come clean without a thorough scrubbing. Scrubbing is the worst thing on my shoulders ,because it pits my strength arm against arm, and it dislocated half my fingers, and both my shoulders, and some ribs. Which is all well and good, and to be expected. Until my right shoulder goes *SNAP* and I get the feeling of a hot poker going through my shoulder blade and into my ribs, accompanied by a very strong electric shock feeling. My right hand went numb for a minute, and when the feeling came back, I started scrubbing again. A bit later I was putting a dish into the rinse water, and just shifting my weight that slight bit caused the same sensation through my left hip.

Once the dishes were all clean, and sat out to dry, I took a nice 2-3 hour break and watched a movie, and read a chapter or five of my current book. Then I put away all the dishes. And I even remembered to write myself a grocery list, so we wouldn't be out of toilet paper with me begging my hubby to run to 7-11 to pick some up at 10:00 at night... again.

So tonight, I will try to go grocery shopping. And once that is done, and I get home, and have everything away in its cupboard, I will once again contemplate laundry. Or maybe I'll put it off another day or six... I won't know what kind of energy I'll have until the time comes...

I hope everyone is doing alright.

Hugs and happy thoughts to all of you!

Can we ban the use of invisible sledgehammers?

It feels like instead of twitching, I had someone smash my shoulder to bits with an invisible sledgehammer. I was reduced to tears for 3 hours straight. I doubled up on my pain meds, and was still unable to distract myself from the pain. I was too drugged to read, so I watched tv, and I had an ice pack on my shoulder.

The twitching is getting to the point that the dislocated shoulder/collar bone/larynx/ribs are all driving me nuts.

I choke on myself multiple times a day. It currently feels like I have 2 separate dislocations, as well as a pulled muscle in my shoulder.

I am once again at the point where I feel as though I can no longer hold my job. The 9 hour days, even though they consist of mostly sitting, are too exhausting. I haven't been able to find a comfortable sitting position for weeks, and I am so exhausted by the twitching and the pain, that I am unable to do anything outside of work.  But I'm me, so I'll tough it out as long as possible.

But I could really use a nap... This whole 2-4 hours of sleep every night isn't enough.

So Tired

The title about sums it up.

My poor hubby has had the flu for the last 2 weeks, and I seem to have avoided the worst of it. All I seem to have caught is the inability to sleep, and all the extra aches and pains that usually come with being sick. And a runny nose. And I have no balance and nearly killed myself in the shower this morning.

I'm also cat-sitting. Have been for 2 whole weeks, and Princess's mommy should be back tonight, so I don't have to climb all of the hazardous, mismatched stairs.

In other news, I recently went to the bookstore, and purchased 5 new books, and went home and downloaded 2 additional books for my ebook, as well as one more book which was e-mailed to me. One of the books I bought was from a series, #20, and I have finished it, and am now re-reading 2 or 3 of the books in the series because some of the main characters haven't been in the last few books, and I missed them.

I have been having problems with Blogger. I recently got a new android phone, which forced me to get a new Gmail account, and I can't seem to leave comments. I've been trying to comment on Jess's blog over at Falling Apart at the Seams, to send my thoughts out to her friend who has just received a liver transplant, as well as Jess's pooch who is having medical problems of his own. I've also been trying to comment on Saurou's post at Disjointed regarding an explanation about brain fog and memory holes."I have a hole in my vocabulary the size of... That place... The south-ish one. You know that big place in the south? Ummm... Texas! A hole in my vocabulary the size of Texas."

Since returning from my vacation, I have only fallen once or twice, and I haven't had to use my cane. But I'm twitching more than I had been when I was falling all the time.

I'm Back!

Okay I got back at the beginning of last week, but I've just been too busy to post anything. This post started off as bullet point, and is therefore a bit scattered, and jumping from topic to topic in no particular order.

Let me start off by saying that driving through the Rocky Mountains in the moonlight is incredible. You can see the snow at the top of the mountains, and the outline, and some very vague sense that there might be trees.

While we were vacationing, my hubby and I, and one of his friends took a nice long walk. We were out for 3-4 hours, and I went without my cane, because driving the 12 hours to Vancouver did a number on my right shoulder. During the walk, I dislocated my left hip about 5 times, and I came to the realisation that uphill is a lot more forgiving on my joints than downhill (and sand is not meant for bendy people to walk in). The next day, I was practically unable to walk, and hubby was hurting  too, so we mostly stayed in, and took our pain meds, and tried to rest. -- Since we got back from the trip, I have been almost walking like a normal person. My limp is very slight, and probably not noticeable to other people. So, walking helps... but you need to give yourself 2-3 days to recover before it feels like it's done anything good.

Now on to my coffee date with my friend in Vancouver. It turns out I thought he was older than he is by a year, and we had nearly 6 years of our lives to catch up on. That made me feel old. I haven't seen him since I graduated, or shortly thereafter, and he is planning on coming back to Alberta for a few days at the end of June to visit family. I think I've convinced him that we need to get the old gang together for drinks one night. I've already got one other friend who's excited about the prospect. I managed to get through the whole nearly 3 hour visit without talking much about my disability; which I'm very happy about, as the last friend I caught up with told me that I've grown bitter about the whole health care thing.

On the trip, I figured out that I can in fact digest things. The only problem is I MUST HAVE COFFEE in order to do so. I didn't have coffee the first couple of days of the trip, and when I finally did, I had to take several trips to the bathroom... So, now at least I know to drink coffee every day, about 2 cups.

I recently had my car to the mechanics for my power steering problems, and at that time they were supposed to do an oil change, and a seasonal inspection. They didn't. I had to spend $120.00 to have my "thick as tar" oil changed, as well as filters, a bolt, a gasket, and a shampoo of the oily bits to get rid of the crud that built up.

There was recently a horrendous fire in Slave Lake, and for nearly a week, I had second cousins who were afraid they had lost everything. They had just built a new house there, and were getting ready to move in, or had started moving into it, so they also had their old house, as well as a business with a lot of expensive equipment. Luckily for them, the fire completely missed both of their houses, and the business, and they will be able to move back in as soon as the electricity and water are functional again. My one second cousin is helping with the rebuilding efforts. They will also be selling their old house, which will help get one more family out of the temporary shelters. These family members have an adult daughter at home with them who has Down Syndrome, so I was very happy to hear that they all got out safely, and that they still have a house to go back to.

I received a letter in the mail today from the Big Hospital in my city, saying that I have an appointment with their movement disorder clinic in August. I'm confused. I had never heard that I had been referred to them, or that there even was a movement disorder clinic in the Big Hospital. When this all started, I was told that the Children's Hospital was the only place with a movement disorder clinic, then I was also sent to a neurologist, and now they're sending me to another movement disorder specialist. I'm glad that they haven't given up on me, but I'm so frustrated by the amount of time I've had to wait.

That's all I can think of for now. I hope everyone is doing okay!

Vacation!

Hello everyone!

I'm on vacation right now in Vancouver!

So I'm probably not going to post again until after I get back. I gave the pretty sushi scarf to my Vancouver friend, as well as a bacon and egg scarf to her hubby. They both loved them.

So... Driving for 12 hours to get here was a bit horrible. The crampiness of the car, the jerks on the highways... one of which followed me with his high beams on for quite a while, because he must have thought I had mine on when I was behind him... Grrr...

I'm looking forward to seeing a friend of mine from highschool this week, I haven't seen him in at least a few years, probably closer to 5 years. I'm looking forward to catching up, but I'm a bit scared of him seeing how disabled I've gotten. That's the worst part of catching up with friends... When I was in high school I was gimpy... always limping around, and clumsy, and occasionally using crutches because of the frequent sprained ankles, but I could still run on occasion, and I rollerbladed frequently, and I could still ride a bike and go hiking... Now I'm slow, and more limpy, and usually walking moderate-long distances with the aid of my cane.

Oh well, coffee with an old friend is always fun times!

And last night, I amazingly found my way back to our hotel with very little help. So my sense of direction is a bit better than I thought. The pedestrians and buses here are nuts though. Changing lanes with barely enough room, pedestrians crossing against the light, walking between the cars, getting stuck in the middle of the road between the opposing directions of traffic.

Oh, and the first place we parked for a few minutes, there were no signs saying you had to pay for parking... anywhere, and there was no visible place to pay for parking, and we got a ticket. $40. Grrr...

Oh well.

Everybody be safe!

And keep spreading awareness!

Hugs,
me

May!

As you all probably know by now, May is EDS awareness month. Instead of writing a whole big thing, I'm going to link a wonderful lady who has already gone through the painstaking process of linking, and mentioning, and such.

As a side note, I have also been posting EDS awareness to my Facebook account, and I suggest you do the same. You never know whose life you could change.

Another side note, I made a sushi scarf for a friend I'll be seeing on vacation next week. I'm currently working on a bacon and egg one for her hubby. The patterns for these are not available online, but in a book by Twinkie Chan. She also has a blog, just google her name plus "crochet" and you'll find all of her pretty creations.

Apparently May is side note month as well... Another side note... I have a brand new spiffy e-mail address! You can now contact me at:

Bubble_Girl_EDS (at) hotmail (dot) ca

The only reason I wrote the "at" and "dot" is to dissuade spammers, cuz they suck.

Hoping for HUGS and understanding for all my fellow Bendies!

Mobility

Yesterday afternoon was busy for me. I had to go to the bank, and stop at Chapters to pick up a crochet pattern book, then go to a Wal-Mart and a Zellers to get the yarn I needed for a pattern. All of these stores are pretty close together, and on a good day the entire trip should have taken me 45 minutes to an hour.

But...

As I was gathering my things to leave work, I fell. With my desk on my left side, I fell to my right a bit, dislocating my right knee, and crashing painfully into my chair. The chair caused me to twist some, and I dislocated my right shoulder and hip on impact. My left hip is still not healing, or feeling any better from weeks ago, when I must have done something to it, so I've been limping, favoring my left hip for a very long time.

I had to use my cane. This is usually not a big problem, as my right shoulder is still kinda good, and can take the added stress of cane use most days. But my left shoulder will never be able to take the added strain, so even after dislocating my right shoulder, I still needed to use it for my cane. And even after dislocating my right hip and knee, I had to use the cane for my left hip, so I at least wouldn't be limping onto my right leg (If I'd used it for my right leg, I'd have gotten about 5 steps before I turned into a puddle of jello). The little bit of lessened strain on my legs meant I was in about even pain in both sides. Between caning with my right hand, and carrying with my left, both of my shoulders were killing me after about 5 minutes of walking. I also find that when I'm using my cane, I use my core muscles a lot more for balance, and stability, and it causes my ribs to slide in and out almost constantly.

By the time I had the book, I was ready to go home and chop off all my limbs. But I'm stubborn, so I continued on. When I got to the yarn aisle at Wal-Mart I was wishing I'd grabbed the last electric scooter they had for my trip, but I have too much of that self-destructive pride in my blood... By the time I was through Zellers' yarn aisle, I barely felt steady enough to go down the escalator.

This pretty much confirms for me that I will be needing a scooter of my own much sooner than I can emotionally prepare for it. If I can't even walk with a cane while carrying a small book and 3 balls of yarn, I am quite certain I will not be able to push myself in a wheelchair. So that leaves a power chair or a scooter.

The entire trip kept me out for 3 hours, and my concerned hubby texted me asking where I was.

Only good thing is that everywhere I went people were kind enough to open doors for me, and not to stare at me, or comment on my age.