I went to a Scottish fair on Saturday. It’s an annual fair every October, and we’ve gone every year for the past 7 years or something like that. I love it. I’m not Scottish (as far as I know), but I’m Irish, and there’s a lot of overlap in both the cultures. I love bagpipes, and there’s a family band called Celtic Spring who are there every year, it’s fun to see them.
We were there for about 5 hours. It was a lot of walking and standing and sitting on the ground instead of having a chair. When we did manage to get chairs, it’s not like they were comfortable. I had a backpack with things I needed throughout the day. It made my back hurt pretty bad, but what am I supposed to do? Either not have my things, or run back to the car which was at the opposite end of the lot because all the HPs were taken. It always seems to be a choice between evils. Shot or hung?
I don’t mean to bitch. I had a great time, and it was well worth the pain I was in. But man, it was bad. Looking back on the other years I’ve attended the Fair, this was the worst year for pain. In previous years I’d get sore feet from walking and maybe a headache eventually or a sore back or something. But this time around I had a headache from the time I arrived, and it never went away. My back was knotted up and it caused an awful burning pain. My legs were on fire after a while too. My feet were good for most of it, because I had good shoes, but the last hour or so they started to hurt too.
It’s interesting to be able to use the fair as a gauge for my pain the last few years, since it’s something I seem to remember so well. My pain has gotten worse every year, and like I said, this year was the worst I remember. It’s just weird because I’m on Plaquenil, methotrexate, and I had that dose of IV steroids at the doctor last Tuesday, and according to my Lupus doctor, I’m not supposed to be hurting really at all. That’s where I think the chiari comes in to play. I wonder if I’ve got nerve damage from the syrinx that is making my extremities hurt. I was experiencing a lot of weakness in my legs when we got home. It seemed like my legs wanted to give out when I walked up the stairs at home.
I just feel like my Neurologist (chiari doctor) is candy-coating everything right now. Things are bad. The MRI doesn’t look bad, everything going on is ‘small’. But from what other patients say, size is not a factor in your symptoms. I know I’m a high-risk patient when it comes to any surgery, but I keep reading things that describe this particular surgery as “minimally invasive”. I want him to understand how painful it is on a daily basis, but I don’t want to go in there and seem like I’m just bitching or something. It’s serious business. It’s like I have to come up with a strategy to explain to doctors how bad it really is without sounding like a hypochondriac. Then I start to doubt myself. Is it really that bad?
Yes, Jill. It is.