First off I have been reading all of your wonderful comments and though I haven’t gotten around to writing back I just want to say thank you and I really, really do appreciate the kindness and support. I try to respond individually to every comment but sometimes it takes me a little while to get to them. I’m also a bit of a perfectionist; I try ridiculously hard to say the exact right thing when I do respond. I feel like I owe everyone at least that much in comparison to what you’ve all given me.
I’m super tired right now, I haven’t slept in the last 24 hours, though, I did sleep the entire day the day before that. I got my fist dose of how much the beta blockers really are going to slow me down in regards to exercise. If they keep it up I think that I’ll be trying a different one or switching to the calcium channel blockers. I rode my bike to the nearby grocery store – something that I can normally do in my sleep – because my parents were out of town with the car, I had to get off 3/4s of the way there and walk it! That’s how exhausted I was and it was so embarrassing. I was so exerted that I nearly threw up multiple times and my entire body was shaking so that I couldn’t properly deal with my money in any sort of timely fashion. Of course I also got the “would you like to donate so and so much $ to the children’s hospital” which I always try to say yes to but then I had to sign my name, which took me way longer than it should.
I had considered calling a taxi or a family member to take me home but my pride got in the way of that. I ended up walking my bike the entire way home aside from the downhill areas. I’m still surprised about just how extreme the change in my resistance was. When I checked my pulse it was only at 117 – which might not be good, those of us with MFS are not supposed to get our hr past 100 when on beta blockers, but I hadn’t planned to – the point being that before I had gone on them I would get my heart rate up to 180 before I felt that exhausted (with the questionable approval of my cardiologist). I also forgot my asthma inhaler which was insanely stupid. Beta blockers can make asthma worse, but so far mine seems to be mild enough to take it. I just hadn’t expected to be exerting myself hardly at all and so I hadn’t properly thought ahead.
I’m having a hard time seeing today. This happens occasionally and it’s hard to explain. My eyes just don’t seem to focus as well and everything seems a bit blurry. It’s especially noticeable when drawing or typing. I often wonder if it’s connected to my headaches at all. I’ve been trying to pay attention and see if it precedes a migraine. I’m going a tad stir crazy. I love having the freedom to drive myself around but it seems like there’s always something keeping me from being able to whether it be a headache, too much pain in general, no sleep or having taken my pain pills – I won’t drive in any of those circumstances because I don’t think that I can do it as safely. Now the days are getting shorter and I still don’t drive at night because of my eyes. I generally don’t mind being at home but I’m starting to get anxious to get out of the house.
My mood’s been low. My best friend since grade 8 moved away to go to college and the day after my parents left to go visit my brother so I was alone in the house with my thoughts. Watching the world spin without me is a bit depressing. I had also wanted to go visit my brother but felt too badly pain-wise to do so. As for my best friend leaving, I’ve been trying not to think about it but I’m going to miss her. I’ve never dealt with change well and she’s one of the only people in the world that didn’t desert me when the pain started and I had to leave school. I’m really, sincerely proud of her but if I’m being truly honest; I’m also jealous. And not the kind of I’m miserable so I want you to be too jealousy. Just the I wish that my life was more like your’s kind. Health really is wealth.