Tuesday, May 18, 2010

Horrible Pills, and Awesome Shoes!

Okay, so I've been on Clonazepam for a week and a half, and I'm currently half way to the dose I'm working up to. So far, I'm extra sleepy. As in, I just had a week off work, and I spent on average 12-14 hours in bed every night. Not so good for the joints.

I've also been falling a lot. Once, I was trying to get to the kitchen to make myself a glass of iced tea, and I fell at least 6 times in a row. Another time, I fell so many times, I gave up on walking, and just crawled. The falling is weird though. Sometimes it feels like a balance issue, or a blood pressure issue, sometimes it feels like a dislocation issue, and sometimes without warning, I'm significantly less vertical than a moment before, with no discernible cause.

A while ago I stumbled on a website for some awesome shoes, and I finally kicked myself in the pants, and bought them. I don't generally spend money on non-essentials for myself (yarn is exempt from this, because I make things for other people with it) and I already spent about $150 on new shoes and expensive insoles at the beginning of winter. Back to the point. I bought myself some Vibram Five Finger shoes. They are the best feeling shoes I've ever had. They allow me to feel more when I'm walking, so it's improving my balance, and co-ordination a bit. They also force you to walk like you would barefoot, which is good. That's how we were born... It's how we evolved... BAREFOOT. So yeah, that's me for now.

Oh, I also bought a back roads map of Alberta, because I am determined to go hiking this summer. DETERMINED. I will take braces, and ice packs, and heat stickies, and Benadryl, and bandages, and everything else I could possibly imagine needing. And I will carry it in a properly fitted backpack with hip straps to supplement the shoulder straps. And I WILL do it. (Right now I'm mentally sticking my tongue out at EDS... Mocking it the way it's mocked me my whole life)


Achelois said...

Hello My virtual friend,

Good grief I hope the falling and associated stuff is not awful side effects of the clonazepam! I am not very good at putting up with severe side effects of meds! So admire that you continue.

Only fellow EDSer's understand the mixed blessing of hours of sleep. I so get what you are saying on that front.

The shoe's look good. I have tiny tiny feet (size one half UK size) which precludes me from many helpful shoes. Unfortunately because my feet have lived for 45 years now they are so not child shaped let alone the impact EDS has on them. Even though I am not underweight anymore my ankles are so tiny shoes are problematical at the best of times. So despite the fact that I know jealousy is a completely negative and futile emotion I must admit to a little envy on the shoe news. Pleased obviously for you though.

I couldn't help but laugh at your wonderful determination for your plans to go walking. Tenacity it seems goes hand in hand with EDS.

Take care and look after yourself.

elise said...

Sleeeeeep.... My favorite activity, unfortunately. Actually, I quite like my dreams - vivid as movies sometimes. And then there is the pain... migraine from sleeping too long, joint aches from being horizontal, feet/fingers/shoulder/jaw/whatever slipping out of place, muscle spasms... Yeah, sleeping is such a mixed bag with EDS.

Klonopin can really knock you out. I'm glad you are taking time from work - though your body kind of mandated that.

Falling - have you heard of drop attacks? I can't recall if they ruled out epilepsy? My college roomie was diagnosed with epilepsy when she went through a phase of simply crumpling to the floor with no other apparent cause.

Oh, I miss camping and climbing. I used to run up and down the smaller mountains in New Hampshire growing up. I camped until ~6 years ago too. Camping is more related to hubby (he's never been) and lack of equipment (past boyfriends always had the gear). Alberta must be soooo pretty! I don't care for the California Sierra much.

I think I'd not be allowed in the house if I came home wearing those shoes!!! I know others who've worn them and swear by them, but my loving hubby would never been seen with me in public wearing them. Not worth the battle on that score, but if they help you out, I'm all for it! What color did you get? I like the aubergine mary janes. (It's good to treat yourself - not selfish in moderation.)

You've been on my mind a lot lately and I hope you are doing well aside from the EDS. Life good with your handsome man? Still going out with your friends? Et cetera?

Warm hugs.

BubbleGirl said...

Don't give up on good shoes... just try on the weirder ones like me!
I don't know if you looked past the page I linked to, but these shoes are available to be shipped anywhere in the world, and they are in UK sizes (maybe there's a retailer near you? Go try some on!). A bit strange when you first try them on, but it feels so nice to be able to move your toes independantly.
As far as the hiking goes, I've been telling myself "I can't" for so long, I need to TRY so I know if I'm lying to myself. That's why I WILL go hiking, even if it injures me, just to prove me wrong.
I've asked my hubby if he would be interested/able to go hiking with me (his hip still isn't doing too well) and he agreed the exercise would be good for the both of us.

The new medication and time off work were a coincidence. So was the fact that Hubby and I didn't make any plans to go anywhere.
I have heard of drop attacks, but I have no idea what is causing these; as I said at different times it feels like 4 completely unrelated things. They started a week before I was hospitalized, stopped for the few days I had truncal ataxia/generalized dystonia, and started up again once I was off the Pramipexole. I'll have to bring it up to the movement disorder lady, or the neurologist when I see him in September.
I used to go camping with my dad every summer. we wnt on long hikes, did mountain climbing, explored caves, went on long bike rides and rollerblading. Until I was about 16 or 17, when my body started getting worse, fast. I'm glad my dad never had to see me in the shape I'm in now, but it would have been a lot easier to push myself if I still had him to help me through it.
My hubby and I are doing pretty well, and he totally wants a pair of these shoes (mine are the grey/camo ones). There haven't been many opportunities to go out with friends lately, and with these pills I'm lucky if I make it through the necessary parts of my day with ANY energy left over. Lately, I've been reading, watching movies, or crocheting in my spare time.

And as always ladies, thank you for your comments, support, advice and friendship.