NZer1 wrote:Another great read is The Brain that Changes Itself by Norman Doidge, MD
I also highly recommend this book. It gives hope where none was before.
I will read it, thanks NZer1 and 1eye for the rec.
I want to focus on diet and exercise for the next few months, to see if I can achieve any health improvements that way.
Some notes from our recent vacation:
I perceive Cinderella's castle as a much brighter shade of blue now, which changes the look entirely.
I am more comfortable with brighter manmade objects than brighter nature. When the sky, grass, and flowers are brighter than I've ever seen before, it is unsettling. There is no way to think, "They are making brighter cars/clothes/billboards these last six months, bright must be very in," when it's the blueness of the sky that is unnaturally saturated.
At the end of a long theme park day, I had been sweating and the sweat had dried and swimming sounded great. Previously, I wasn't sweating like that, I had no need to go swimming, and what I wanted was for my husband to keep the kids out of the room for two hours so I could lie flat and half-recover. There was none of that this trip. He never got kicked out of the room with three kids when he was tired too. In the evenings, we went swimming or we went to Downtown Disney.
My appetite is better. Previously I'd feel nauseous but force myself to eat because I always felt better after eating (but I couldn't eat too much, or that might make me instantly fatigued and unable to go on). Now, I just eat, I'm hungry, I enjoy it, life is good.
Jeff was excited about the changes in me, "It's the first Disney trip since you've been healed, though I know we can't say healed, but you are healed." Healed is not quite the right word because I still have MS symptoms, but the change is significant.
This was our third trip in which I got a GAC (guest assistance card) at guest services. If we go in a cooler season next time, I don't think I'll need that GAC. This was not true before. Two years ago, on a previous trip, we'd arrived at Magic Kingdom, taken the train to ToonTown, and stood in line for Goofy's Barnstormer. The line is in the sun, it was too hot, and I was in terrible shape by the time I got through that one line. Back on the train to the front of the park, the kids and my husband met characters while I took the time to sob in the bathroom and then went to guest relations to ask for the GAC. A GAC is incredibly useful and not a big deal unless you are like me and taking it as a defeat. (GACs have different stamps, mine always has an arrow on it to use alternate entrances, which can mean being sent through the fast pass line instead of the regular line. It is for people with hidden disabilities. Another thing I didn't know originally at Disney World is that you can go to First Aid, where they have cubicles with cots where you could lie flat in the air conditioning to recover, and then get back to your day. I haven't done this but it sounds nice.)
We did not rent a car but made the mistake of using the Disney buses. The problem is that you are not guaranteed a seat. I learned that I am incapable of standing for the duration of the trip. People are nice and as soon as it showed that I was having difficulty, I was offered a seat. It is hard to watch other people standing with no issues. On our last bus, there was a woman my age and her young daughter who stood even though there were seats available. The wait for the bus was also in direct sun, so I was weakened before I ever got on, and that was also why waiting for the next bus that might have seats available was a good option in the evening but not the morning. We adjusted by walking through our resort to the next resort that has better chances of getting seats (since the buses went there first and then went to our resort already half-full). I gave myself the out that if the bus was full or the line was long meaning we'd have to wait for a second bus in the sun, we could take a taxi. We found ourselves in that situation just once, it cost $20, and it was well worth it.
This is interesting, we had enough frequent flyer miles for five free tickets, but they were on two different airlines. My husband took our youngest on American Airlines, while I took our two elementary-aged children on Southwest airlines. There is no way I would have trusted myself to fly alone with the kids like that prior to my procedure. Even if 90% of the time I'd be somewhat well and functioning, there is that 10% when I could not have trusted myself to be safe and cognitively-together enough to take care of myself, let alone them. The stress of flying with kids could do me in right from the beginning! And if I get that overly fatigued and in MS-pain, it feels like it's doing damage; I do not want to be there. But since the procedure, it hasn't been like that, and I felt like I could take the kids on my own, and in fact was able to do so without problem. Even when we got to the resort the first day, I was able to walk around with them and explore rather than the usual lying down and not being able to recover until not the next morning but the morning after that. (We'd go out and do things the next day, but it wouldn't be until another day into the trip that I'd feel recovered from the travel.)
In the week since we've been back, my husband keeps commenting on how well I'm holding up despite how much I've done and am doing. I caught a cold, too, and that alone would do me in before. Next week I'll finally get a break, and I need it, but if my life can be split into "before" and "after" my CCSVI procedures, I am definitely in the "after" and it is good.