Lately I seem to be completely absorbed in this stupid "syndrome" I have. It seems to have taken over my life. I hate to just go on and on about it, but it is my blog, so I guess I should write about what's going on in my head.
Last week I had four really, really bad days right in a row. By the time it was over, I was ready to be committed and to be perfectly honest, if I had to continue to live in that condition, I'm not so sure I would want to continue to live. By the end of the fourth day, brain surgery was beginning to sound like a viable alternative. I'm not going to go into graphic details, mainly because I don't want to relive that nightmare. Suffice to say, I pray I NEVER have to go through four consecutive days like that again.
I have found a lot of support, some great new friends, and a wealth of information at www.butyoudontlooksick.com. Many of the people there have Lupus or fibromyalgia or migraines or some other type of chronic pain. However, a surprisingly large number of people in this world are dizzy, and for a wide and varying number of reasons. The site is actually a meeting point for those of us who suffer from "invisible" illnesses. We aren't maimed or mutilated or deformed in any visible way, so it might appear to the casual observer that we are perfectly normal. Nothing could be further from the truth. I needed this site and these people. I need to get a grip on what is really going on with me. I needed a way to try to make others understand that some days I just don't have enough spoons (if you don't understand the reference to spoons, see Spoon Theory).
Monday and Tuesday of this week I was fantastic. I couldn't have been closer to normal if I was actually normal. I felt good. I had plenty of spoons to start and more than a few left over at the end of each day. I was in a terrific mood and actually stayed up and had real conversations with Bud when he came home from work each day. I didn't post a damn thing, but I was enjoying feeling good so much I just couldn't think of anything to write. And, as we know, all good things must come to an end. Today is gray and cloudy. A major low pressure system will be passing through this afternoon, bringing rain and wind, but since it is relatively cool I'm hoping no thunderstorms. I have started on a headache, but it isn't too bad yet. This is supposed to be over by tomorrow afternoon, so some pain meds and sleep will get me through it (I hope).
I haven't really been feeling sorry for myself, but I have felt a bit like I've been stranded at sea since I "got" this SCDS mess. I originally went searching for a support group specifically for SCDS, but since it is such a rare condition the only site had been closed down. Now I feel as if someone has thrown me a lifeline. I'm no longer alone out here. As a matter of fact, it's an armada.
Last week I had four really, really bad days right in a row. By the time it was over, I was ready to be committed and to be perfectly honest, if I had to continue to live in that condition, I'm not so sure I would want to continue to live. By the end of the fourth day, brain surgery was beginning to sound like a viable alternative. I'm not going to go into graphic details, mainly because I don't want to relive that nightmare. Suffice to say, I pray I NEVER have to go through four consecutive days like that again.
I have found a lot of support, some great new friends, and a wealth of information at www.butyoudontlooksick.com. Many of the people there have Lupus or fibromyalgia or migraines or some other type of chronic pain. However, a surprisingly large number of people in this world are dizzy, and for a wide and varying number of reasons. The site is actually a meeting point for those of us who suffer from "invisible" illnesses. We aren't maimed or mutilated or deformed in any visible way, so it might appear to the casual observer that we are perfectly normal. Nothing could be further from the truth. I needed this site and these people. I need to get a grip on what is really going on with me. I needed a way to try to make others understand that some days I just don't have enough spoons (if you don't understand the reference to spoons, see Spoon Theory).
Monday and Tuesday of this week I was fantastic. I couldn't have been closer to normal if I was actually normal. I felt good. I had plenty of spoons to start and more than a few left over at the end of each day. I was in a terrific mood and actually stayed up and had real conversations with Bud when he came home from work each day. I didn't post a damn thing, but I was enjoying feeling good so much I just couldn't think of anything to write. And, as we know, all good things must come to an end. Today is gray and cloudy. A major low pressure system will be passing through this afternoon, bringing rain and wind, but since it is relatively cool I'm hoping no thunderstorms. I have started on a headache, but it isn't too bad yet. This is supposed to be over by tomorrow afternoon, so some pain meds and sleep will get me through it (I hope).
I haven't really been feeling sorry for myself, but I have felt a bit like I've been stranded at sea since I "got" this SCDS mess. I originally went searching for a support group specifically for SCDS, but since it is such a rare condition the only site had been closed down. Now I feel as if someone has thrown me a lifeline. I'm no longer alone out here. As a matter of fact, it's an armada.
I think it great that you found this site even if it is on the computer the people are real. Support groups are great and I'm glad you kinda sorta found one. Enjoy meeting your new friends and I am glad you shared the spoons theory story- It was great.
ReplyDeleteWendy