I went to bed early last night. Really early. Around 830 PM. There I was, in bed, legs elevated... awake till 10 PM. I didn't think I'd get to sleep. My legs were swollen (as per usual) and I was really tired (as in, drugged) but about ten minutes after my legs were elevated the itching started. It started in my calves and went up my legs to my lower back and my skin itched so bad I thought I was going insane. Of course, scratching didn't help. Stretching my legs didn't help. Nothing helped. I finally dozed off sometime after 10 PM. (I know this because "Golden Girls" was on TV).
At 4 AM, the disabled guy got out of bed to go to the bathroom and I woke up. I started to roll over and couldn't move. The pain was so fucking bad that I couldn't move. I tried rolling the other way, thinking if went where more bed-space was, it would hurt less. It didn't. It hurt so bad that I couldn't stop the tears. I cried. The pain was all over. It was everywhere, but most of it radiated from my right arm and shoulder. (at the moment, it's not so bad, around a 5 on that 1 to 10 pain scale). I felt as if my muscles were trying to rip themselves from my body. Burning, shredding pain. I managed to get turned over and then dozed in and out of sleep till I got up at 5 AM. At 5 AM, it took me twice as long to get up and get my clothes on (giant T-shirt, loose yoga pants; I sleep naked, sorry for that mental image).
I've been up an hour as I type this and my muscles ache as if I've got a horrible flu. But I don't have the flu. This is fucking fibromyalgia and it fucking sucks. This is the worst day I've had in weeks. Hell, maybe months. Yesterday was bad, but in the drag-me-to-the-floor sense. Unless this Gabapentin kicks in hard, then today will be worse than yesterday.
I told the disabled guy (who got up right when I started typing this) that I woke up at 4 AM and cried from the pain. I couldn't move. He said, "I've felt like that before."
I replied, "It isn't the same."
He said, as if I hadn't spoken, "But I kept going anyway, moved and got up."
Well, so did I, Goddammit. You see me sitting in this fucking chair? How the fuck do you think I got down the stairs? So I repeated, "It isn't the same. This is different. You were sore from working out. I'm sore because I'm alive." He sort of made a shrug as he put on his hat (he was heading outside to shovel the couple inches of snow we got overnight).
So I added, "I know pain, Goddammit! I gave birth to an eleven pound baby. I had my leg bones sawed off and replaced with metal. I know what fucking pain is. Do you realize how badly I had to hurt to be brought to tears? Tears!"
Of course, he didn't care. He doesn't understand or he doesn't care. But what a way to wake up.
If I don't move at all- if I sit absolutely still... the pain is about 4/5 and my skin itches in little electrical-ish jolts. But of course, I can't be absolutely still. I have to breathe.
Hugs to you, Patty. I don't have fibro, but can relate somewhat to the pain, although mine is usually in the joints not all over, and the itching. I've never heard it described that way, but that's exactly how it feels!
ReplyDeleteTake extra good care of yourself today.
Patti- it's so distressing to me that your husband doesn't seem to care. What is his problem; why does he deny this?
ReplyDeleteMenzie, he had a stroke fifteen years ago (he was 28). Along with being paralyzed on his right side, he has brain damage and communication disorders. He doesn't express his emotions properly and sometimes he doesn't express them at all.
ReplyDeleteAnd it sounds like I'm defending him when I say this stuff, but I'm not, its just fact. He's got varying degrees of aphasia and apraxia (there are several types of both and he's got signs of several types). Everything seems to be in the state of "if I can't see it, I don't understand it" to him.
I ranted the other day to him about it (because I was tired and didn't want to go to the store when its so much easier for HIM to go to the store) and I said something like: "This is real, you know! A doctor diagnosed it, I take pills for it, there are those stupid commercials on TV... REAL!" so he knows its real and he gets it, but he doesn't know how to deal with it.
Even if he would just barf up a simple "it'll be okay" or "I'm sorry you hurt so bad", I don't think it'd suck so much but he can't even do that. When he does, its only under duress and it comes out snotty and angry.
I just asked him if he believes its real and he said he does. So I asked why he doesn't care and he said, "I care, but I can't do anything." (which is when said he could at least say "it'll be okay" and that caused him to respond in the baby-talk he uses for the dogs "it'll beeeee okaaaaay" at me, so I told him to go away- he was going out to his shop anyway).
So, technically, its not his fault, but its been fifteen damn years and I'm tired of having to be the strong one all the time.
Oh, honey...I KNOW how you feel, both the physical and the emotional pain. My ex used to get angry with me, because he felt helpless, I guess...if they can't fix it, they don't want to know about it. All I wanted was a hug, but he was incapable. The one time I cried in front of him, he left. Left the house. I wish I could be there to stroke your hair and then whisper dirty jokes in your ear to make you laugh. Fibromyalgia has been an ever-morphing thing for me. Sometimes I am philosophical about it: sometimes I weep in sheer frustration, for all that I can no longer do. As a person who cannot safely take narcotics, it helps me to know that they are not always magic...not sure if it helps you to know that you have helped me today, but I suspect you're the kind of person who would care about that.
ReplyDeleteI am so sorry for your pain. M's sister has the same condition and my heart aches for her (and everyone else that has it). Its a horrible condition. Wish I could help out in some sort of way.
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