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October 4, 2011

I wasn’t going to do another update today since I have a fair amount of studying to do for a test tomorrow morning, but something happened this afternoon that felt both horrible and wonderful.

I had gone back to my parents house after school and was talking to my mom before we left to go to my place. She asked if I had finished reading “that book” yet. “That book” is “Awkward Bitch: My Life With MS” by Marlo Donato Parmelee. I told her no, I hadn’t finished it yet because I had too much reading to do for school. She told me “hurry up and finish it already, I want to read it!”

She’s not in denial any more. She’s finally making peace with me being ill. It’s still hard of course for both of us sometimes. I jokingly said I was going to weigh my bookbag when I got home to see just how heavy it is today. She told me that I should get a rolling bag instead that I can pull around because “you may not be able to carry that bag for much longer…” She trailed off and muttered “if it comes to that….”. That was hard to hear. I know it’s reality, and if it comes to the point where I’m too weak to carry the bag on my back then I’ll be fine with using a rolling bag instead. Plenty of people that are perfectly healthy use them so it’s not odd or anything. I accept that things could get worse, stay the same, or maybe even improve. Accepting that things can get worse though is not easy to do. It has taken me a long time to get close to it, she’s just starting to accept it. I’m really happy that she’s seeing things for how they are and not how she wishes they would be now, and I’m glad that she wants to educate herself on not only the facts but how it feels, but I’m devastated that she has to do that at all. No parent should ever have to deal with the possibility of their adult child not being able to care for themselves any more.

On the way home she asked how my eyes were doing and for the first time I tried to explain to her just exactly how everything looks to me right now. The fact that it’s been rainy here lately helped since it’s kind of like looking through a foggy, raindrop covered wind shield. Being able to really talk to her about it and try to explain things in ways so she can relate to how it feels is helpful for both of us. Mind you it also hurts both of us, since then it’s acknowledging the problem. This whole mess was kind of driving a wedge between us emotionally, so I think now that we’ve both come to terms with things that will go back to normal or even be better than before.

Feeling kinda weird right now, both mentally because of the whole thing with my mom (though it’s a fairly positive feeling….kind of like the first time you look at a picture of someone you love that died and smile instead of cry). My left leg is numb up to the knee and most of the left side of my left hand and forearm are numb. I’m having random spasms and tingling in my right foot and thigh. My legs feel tense and sore, like I ran a marathon then sat cross-legged for too long. Also been getting that weird thing where patches of my skin feel soaking wet though they are dry (that’s happening in my legs, lower back, and left side of my stomach). Eye pain is a bit much right now since I just spent a good chunk of time finishing that book (and I sobbed like a baby at the end, so good, wonderful book, highly recommend it to anyone that has MS, knows someone that has MS, or anyone that has or knows someone with any disability….scratch that I make that EVERYONE. Everyone should read it. Yes. Definitely). So I’m going to go have some me time. Sink into a nice lukewarm bubble bath, give myself a pedicure, then get cracking on my homework (all with my gel mask on, of course. That thing helps so much with the pain in my eyes).

Oh, I called the optometrist today. Lucky me, I have my exam set for tomorrow evening after classes. The secretary was super cute and really sweet (even wished me a happy belated birthday when I gave her my information), she really brightened up my day (I was feeling a little down because minutes before I had overheard some other healthcare field students talking about an MS patient that cried for half an hour after getting their adult diaper changed). I’m pretty excited for the eye exam. I’ve worn glasses since I was about 12 years old so getting my eyes checked is routine and normal for me. I’m going to tell the optometrist what I think is causing the problems, and check to see if I’m becoming more nearsighted on top of any inflammation going on. If there is inflammation, I will see if I can get in at the MS clinic at the end of the month and talk to Dr. Kickass about some prescriptions for symptom control. Then, I get to pick out some new glasses! Buying new glasses for me is like buying shoes for most women. I love it. It know exactly what style I want, I can’t wait to find just the right pair. A friend may be coming with me, but now not because I’m scared about the exam, but to help me find the right pair. I can’t wait 😀


From → Journal

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