This is the day that the Lord has made, I will rejoice and be glad in it.
So today I am not feeling well as the gnawing pain in my abdominal area and back has not gone away. But, I am optimistic at least.
I don’t know if I’ve blogged about it, but last week has been crazy. I’ve had constant nausea, some days completely throwing up everything (loosing weight while I’ve been at it) been at the ER, given narcotics for the pain, and anti-nausea meds (meant for cancer/chemo patients), have been stuck in bed getting extra rest- yet I still feel exhausted and weak. It sounds so strange, but some days it literally feels like I’m dying. Especially when it’s hard to breathe and every activity makes you feel like you are going to collapse onto the floor. (And by activity I mean simple things like standing/walking)Yet to the outside world, YOU, if you were to glance at me, for the most part, you would probably think there’s nothing wrong with me. Or wonder why a youngin like myself walks with a cane. It’s only my one close friend that seems to notice the same things I do. I can tell when I’m pale or if my skin changes color, and apparently she can too. I remember last week I was sick but we went out to see a movie because we figured sitting wouldn’t be much effort. And I really don’t like ditching plans because of being sick all the time. Anyways when we got out of the theatre she looked at me and said, “Wow, you’re really yellow!” or something of that effect. The rest of the time she noticed I was being very cautious with my words trying not to studder/slur my words. I mentioned all that to say, it’s really nice to know that someone out there has seen me during my flares. She has been with me at the hospital, has slept over at my house on “seizure alert” and tells me quickly to sit down if she can tell that I look faint. She is a blessing. Normally, I just find it frustrating when people say, “You don’t look sick” so when she tells me I do look sick. In a weird way, it’s validating. And I feel a little less ostracized by society.
FYI: A lot of people with severe medical conditions don’t look sick, and get hurt when people look at them and act like they are just lazy and need to get off of their butt. It is no way to respond to someone who is already going through enough physical torment.
Anyway, today I had to use my cane while walking/standing in church. My balance has been off the past few weeks and having a cane has helped me stay stable a bit, it also helps me with my leg muscles that have been noticeably weaker lately, specifically on my right side. (I fell again last week because my legs gave out on me. This time I didn’t hit my head or anything though…PHEW).
At church though, If I don’t have my cane, I have to make sure I hold onto the pews in front of me with both hands, just in case.
But today cane in hand, when I stood up, I felt like I was going to drop to the floor. I was kind of scared. I tried to sing, but couldn’t get much out because I felt short on air. I wanted to panic but stayed standing. (Why? Because I’m a fool, that’s why.). When I was listening to the sermon, my stomach muscles were twitching the whole time, and it was distracting. I’ve also been having other jerking sensations all over my body. I’ve had the muscle fasciculations for about 3 months straight now and it has not stopped. Usually I get them in my legs the most, my feet, lips, eyes, and stomach.
Right now I feel so fatigued that I just want to curl up with my heating pad and hibernate forever. I don’t have the energy to walk down the stairs, barely had the energy to make it through church. You would think that sleeping would give me more energy. This isn’t so.
I’m hopeful that one day I might have another diagnosis for the things going on in my body. A month ago I thought all hope was lost. Had practically given up, and I felt that seeing more specialists was useless. Because they always gave me the same tests and they always came back fine. But FINALLY, something was wonky. So praise the Lord for that! Yey. 🙂