Wednesday, May 26, 2010


Keeping up with my theme of "I'm not going to tell myself I can't" I went rollerblading yesterday.

I haven't done this since 2008.

The bike path is in horrendous disrepair, and there is construction. Construction means detours. Detours designed for people on foot, or on bikes. Detours most definitely NOT constructed with ROLLERBLADES in mind. I had to at one point choose between gravel and grass, and at another point I had to cross a VERY busy street, and go down a different VERY busy street, on the street itself, the wrong direction for half a block before there was a paved pathway to get back onto. (Thank goodness there weren't any cars turning right)

The round trip is 18km. I used to be able to get to the halfway point on rollerblades in 24 minutes. That was my record at least. Yesterday, it took me an hour and 45 minutes to get to the halfway point, and just over an hour to get back. Almost 3 hours for the round trip. But I made the whole trip. Only a couple dislocations... My hip went out for a few seconds, but went back in very easily, and my wrists and fingers were having problems saying "in" in my wrist guards. I didn't fall even once, and that's pretty good for me.

The weirdest thing though, is my hips and knees held up pretty well through the whole ordeal, and it's my shoulders that are bothering me today.

Only one incident of allergy-induced asthma attack, and that was as I was in my car, DRIVING home, when I passed someone mowing their lawn. It took me about an hour before I could breathe normally again.

Today, with my truncal/core instability issues (the "twisty" that hospitalized me, which is still present, but to a FAR lesser degree), it felt like I dislocated something in my spine. It went *SNAP!!!* then it went *click* and it hurt like crap, and I almost cried.

As far as the twitching goes, I seem to be doing less of it during the day, and more of it at night, but it's not as bad as it was. I'm almost at my full dose the clonazepam. I will be having a follow-up appointment which should be taking place in about 3 1/2 to 4 more weeks with the movement disorder lady, and a follow-up with my rheumatologist in the middle of June.


MLee said...

Good for you. t took me many years to get over being scare to do anything. I got to the point that it was more important to really live life than to just breath. So there is no more can't in my life either.

Achelois said...

Wow I am impressed at the roller blading efforts. Has it occured to you to help your bendy body out by gradually building up to the whole by starting off in bite sized achievable distances over time then accomplishing the whole, fit without injury. Just a thought. I would imagine your shoulders hurt because roller blade involves arm swinging!

I hope the spine issue today wasn't the result of throwing yourself in at the deep end yesterday!

Its good about the twitching abating during the day, I wonder what opinion they will have at the forthcoming appointment about night time. Good luck with that.

@ MLee you make a good point - I attended a pain clinic long course, where a woman started every conversation with 'I can't....' after eight weeks I finally lost it a little and said have you ever thought that you could even if you have to be patient and try different strategies. The clinical psychologist said she had been absolutely dying for someone to break and 'say it'! Whilst I do agree one thing I definitely can't do anymore is pick up a kettle of boiling water, its just too dangerous. I am sure I could manage the Great Wall of China if you gave me a few years.

Glad things are looking up for you KG. Really really pleased.

BubbleGirl said...

As far as the "I can't," I think it usually starts with "you can't" and you hear it so many times that you internalize it and believe it.

With my determination to climb a mountain this summer, i figured I should at least start working out my legs somehow. I figured I'd do my normal course, and eventually just shave time off of it. Once it's too easy, I'll add more distance. But I have to over-push myself, or else I can't pi$$ myself off enough to get motivated. I think some of the shoulder pain is from carrying my shoes and extra gatorade in a backpack, which I haven't worn in about 2-3 years.

The spine-twisty thing has been going on since right before I was hospitalised. It seems to be completely unrelated to exertion. It's sometimes REALLY twisty, and sometimes my pre-almost-diagnosis-twisty, which I didn't think about, because I thought it was "normal".

As always, thank you for your comments! They are always apprecited.

Unlucky? said...

Hi BubbleGirl,

I am so happy to find your website. I am being evaluated for EDS and the doctor is trying to figure out if people with EDS have myoclonic epilepsy as well.

Right now the rheumatologist said it's between EDS and Joint-hypermobility-syndrome and they are trying to piece together if the epilepsy+severe-hypermobility are part of EDS or two different conditions that I'm unlucky enough to have.

Any thoughts, websites, suggestions?

Im on Keppra for the myoclonic epilepsy and lots of bandages and muscle-building strenth exercises for the hypermobility. ROFL.

BubbleGirl said...

For more information about the possible connection of EDS, and JME you should really ask Achelois, as she knows more about it than I do. I don't know which sites she may have found that could be helpful to you.

I am glad you found my website, and I hope I have been some help to you!

MLee said...

Sorry to tell you that you have two different conditions. myoclonic epilepsy and EDS are not related. The only reason I know this is because my sister is a genetics doc.

Unlucky? said...

Hi BubbleGirl and MLee,
Thanks for the reply. Sorry it took so long to come back. I guess I am unlcuky then eh? Well, part of life! Wish you had a different answer though, but thanks for trying! I have been doing some muscle strengthening exercises with a Theraband, and man it hurts. But if it helps in the long run, I am all for it. Just have to remember not to overstretch my joints!