Ribbon of Hope
Doesn’t MS just have the prettiest ribbon of any disease? I’ll have to contact the MSSA to acquire one for myself, in support of myself, lol. BTW, I nicked the ribbon off daddyleer’s journal. He is caregiver to his wife, who has MS, and chronicles their life with wit and warmth.
I found a new blog today that I will definitely be following. Excellant MS-blog. Pay Vicki a visit, at http://vvbms.blogspot.com
Turns out this exacerbation/ lack of energy thing I get every day is actually a documented form of fatigue. It’s the manifestation of fatigue in people with mobility issues. One minute I’m going along fine, acting all normal, the next it just washes over me like I’m wading through syrup. As soon as I cross that line of using more than my energy limit I have to sit or lie down for at least half an hour to an hour, sometimes more. This applies if I get too hot as well. It is very frustrating, but I’ve sort of made peace with it now. I know after I get back from the gym and have had a bath (to wash the chlorine swimming-pool water off myself) then I need to do something that doesn’t require standing or walking. This is usually a good time to work on the computer, answer e-mails do research, whatever. After an hour or two of this, I’m usually good to go. I guess it’s just something that needs to be managed in my life. I’m like a cellphone with a very short battery-life. I need to be recharged on a regular basis 😉
The thing I’ve realised about MS is that one has to be super-vigilant. It has taken me 6 years to ‘get’ this. I seriously underestimated this invisible foe. One has to do whatever it takes to arrest disease progression. Each new dimension of disability has to be fought, tooth and nail. I am extremely fortunate in that I have finally found my magical-MS-elixir that is doing this for me. Thank you Lord for leading me to the Fingolimod trials. 7 months and no relapse or progression. If anything, I have recovered a bit of lost function.
Also, 7 months without IV cortisone. My poor skin is finally recovering from the onslaught. It was so red and angry-looking at one stage, but it’s looking normal again. Still a slight rash on my back, but not too bad. I can’t wait to celebrate one year relapse-free! What a personal milestone that will be.
My back is feeling SO much better. The more I hold in my abs when I walk, the more stable my back is becoming. No more of that clickety-clack act that it was doing. I feel a bit stupid. People have been telling me for years my posture sucks (not in so many words, lol) and that I better exercise my stomach muscles. But I didn’t want to hear. I hear it loud and clear now though ;-p
I bought another pair of Crocs. Well, the fake ones. Frocs? Or maybe Quocs. (Quasi-crocs.)
These are black and closed on the top. They look more dressy, and less like beack sandals. I bought them for my upcoming high-school reuion on 17th November. Yeah, 10 years out of school. Yikes. Anyway, I’m going to wear my dressy black pants, that hang partially over the crocs (I mean quocs). I quite like the effect. Dress-code is semi-formal, so it should be fine. Best of all, quocs are really nice and stable to walk in, and I won’t have to look like the class-clown, which I most certainly will if I attempt the high-heels thing. No thanks.
And if anyone offers me a drink, I’ll say, “I think I’ve had enough, don’t you?” *wink*
Interesting point. I haven’t had alcohol in about four or five years. No big deal, I never cared for it at all. But I wonder what effect it would have on me if I were to indulge. Maybe it would balance things out? Still, not an experiment I’m about to try at the reunion.