Okay...Long story, but I have SPMS. I've become a bit of a hermit in the past two years, as things have been getting worse and worse. But last weekend, there was a local gathering with music, and my Hubby really wanted me to go with him. I haddn't seen a lot of these people in a long time, so I said okay.For the most part,it was okay. A long day, and into the night, but I got a lot of hugs,even from people that I didn't know to well. The, "I understand and care" sort of hug. I haddn't told to many people really, but word got around. There were some who questioned me, as if I needed to have a note from my doctor to prove it, but I tried not to let them get to me. More that one person gave me the "You just need more sun" deal, because thats whats out in the news now, and as we are in Alaska, they figure its "the" thing. And now we get to the scary part....
I remember one of Dean's essays, about how she knew how good a time she'd had at a party by how bad the reaction was the next few days...I was home by Midnight, and even though I slept well, I was really out of it the next day. It was a sunny day, and about 50 or so degrees. (Alaska remember...this is warm for us in May !) My Hubby was tired too, but he'd been drinking, I haddn't. Any way, we went to sit in the sun for a bit. Joking about how its all I needed, and then I'd be cured...I lay down on the grass.
After just about 10 or 15 minutes, I all of a sudden felt REALLY hot...I call it a flash point...TOO hot. I had my legs up, feet on the ground, I managed to put my right arm over my face, but it was still too hot. I guess I moaned or something, because my Husband said, "Gee its hot..are you hot ? I think I'll go inside..." I didn't respond...because I couldn't ! I tried to get up, and I COULDN'T MOVE ! He came over to me, and asked what was wrong,and I just stared at him.I guess that was enough to let him know I was in trouble...he was able to help me up, and once up, I was able to hobble in to the house. I was okay once I cooled off, though it happened again later in the day when I was on the bed. Cool then too, not to hot. I was able to roll over after a bit, and get up then. It hasn't happened since, but I get scared wondering what would have happened if he haddn't been there ! My usuall symtoms has been worse all week, and I got a wicked head cold to boot. (Just got my period too, but I won't go into that..Kick me while I'm down why don't you...) My Doc says I just over stressed my system. Well duh ! But that doesn't help.
I'll think again about a night out...and if any one mentions the sun being the "Cure" to me again, I'm going to beat them with my stick !
Thanks for letting me share....No one can understand how scary this was except you guys...
I remember one of Dean's essays, about how she knew how good a time she'd had at a party by how bad the reaction was the next few days...I was home by Midnight, and even though I slept well, I was really out of it the next day. It was a sunny day, and about 50 or so degrees. (Alaska remember...this is warm for us in May !) My Hubby was tired too, but he'd been drinking, I haddn't. Any way, we went to sit in the sun for a bit. Joking about how its all I needed, and then I'd be cured...I lay down on the grass.
After just about 10 or 15 minutes, I all of a sudden felt REALLY hot...I call it a flash point...TOO hot. I had my legs up, feet on the ground, I managed to put my right arm over my face, but it was still too hot. I guess I moaned or something, because my Husband said, "Gee its hot..are you hot ? I think I'll go inside..." I didn't respond...because I couldn't ! I tried to get up, and I COULDN'T MOVE ! He came over to me, and asked what was wrong,and I just stared at him.I guess that was enough to let him know I was in trouble...he was able to help me up, and once up, I was able to hobble in to the house. I was okay once I cooled off, though it happened again later in the day when I was on the bed. Cool then too, not to hot. I was able to roll over after a bit, and get up then. It hasn't happened since, but I get scared wondering what would have happened if he haddn't been there ! My usuall symtoms has been worse all week, and I got a wicked head cold to boot. (Just got my period too, but I won't go into that..Kick me while I'm down why don't you...) My Doc says I just over stressed my system. Well duh ! But that doesn't help.
I'll think again about a night out...and if any one mentions the sun being the "Cure" to me again, I'm going to beat them with my stick !
Thanks for letting me share....No one can understand how scary this was except you guys...
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