As a wife and mother, I spend a lot of time reminding people of things.
"Don't forget your backpack."
"Remember to feed the dogs."
"Don't forget we have karate tonight."
"Can you please put your keys where you can remember where they are?"
Some might call these reminders closer to nagging, but in our case it's the way we can actually get things done. The problem is, I am not as good at reminding myself of things. I know this is normal. What may not be normal, though, is how easily my disease takes over and causes me to forget things that I should have no problem remembering.
More importantly, when things are going well for me it's easy me to forget how quickly my health can go bad. The past few weeks I've had a strong reminder of how important it is for me to be careful with my disease.
It started with just a little too much activity. I did too much bending to plug in equipment. I did a little too much fast walking, rushing to get things fixed for a meeting already in progress. I had a little too much worry, spending a lot of time concerned about things I couldn't really control.
Then I had my medicine.
My medicine is a miracle drug for me. I believe strongly that I would not be as mobile and active as I am, even with my limitations, were I not able to take this medicine. It is a pretty strong drug, though, and must be carefully monitored. With the monitoring, the IV infusion takes about 3 hours. I usually miss about an hour and a half of work each month for the medicine. Although I make it up by working late throughout the month, and just getting my projects done in general, I am still out of the building when teachers and students are not. I typically try to have the infusions on Friday afternoons, since that's a time during the week that tends to have the fewest things missed if I am out of the building.
This month, though, I opted to have my infusion on a Monday. We were out of school for a holiday, and I thought it would be good to avoid missing any work and take advantage of the day away from school.
No one reminded me of how much this drug affects me.
Since I typically have the infusion on Friday afternoons, I rest over the weekend. Resting on Saturday or Sunday afternoons is a part of our adaptation to having multiple sclerosis; in our family this is a normal, necessary part of life. So even though I know that after having my meds I'm more tired than usual, I usually think of the day of the infusion as a day I need to rest--about 4 hours after it's over, actually.
While this is true, and my body shuts down to deal with the medicine about 4 hours after the infusion, I've been reminded that two days after I have my medicine I am forced to rest. This is not just a case of being tired. Multiple sclerosis laughs at "tired." It laughs at "exhausted," even. The term used most frequently is "fatigued"--as in MS fatigue, which is one of the potentially debilitating affects of the disease.
After my medicine, my body took MS fatigue to a new level. The boys got to stay home, because Mommy couldn't get out of bed (Tyler was also dealing with the after-effects of a migraine and Shawn was feeling poorly, so staying home was actually a good thing for them, but when I'm being honest they stayed home because I had to). Mommy couldn't move. Mommy absolutely, no-questions-asked, do-not-pass-go-do-not-collect-$200 had to rest. With the drugs doing their thing, my body told me it was out of order while the repairs were taking place. Because I had tried to force it without that rest, they had more work to do, and I had a harder time recovering.
As the day drew to a close, I returned to normal. The fatigue lessened, and I was able to get out of bed. We didn't make it to choir, but were able to get back into routine the next day. By the weekend, I was feeling great again.
I've rescheduled my next medicine, though. We may be off on a Monday the week of my February medicine, but I'm not taking any chances; I'll have my medicine on a Friday afternoon.
Hopefully, I've gotten all the reminder I need to rest 4 hours after and again 2 days after my miracle drug. If not, I'm open to being nagged/reminded in the future.
Have you ever had a time where you were strongly reminded of something the hard way?
"Don't forget your backpack."
"Remember to feed the dogs."
"Don't forget we have karate tonight."
"Can you please put your keys where you can remember where they are?"
Some might call these reminders closer to nagging, but in our case it's the way we can actually get things done. The problem is, I am not as good at reminding myself of things. I know this is normal. What may not be normal, though, is how easily my disease takes over and causes me to forget things that I should have no problem remembering.
More importantly, when things are going well for me it's easy me to forget how quickly my health can go bad. The past few weeks I've had a strong reminder of how important it is for me to be careful with my disease.
It started with just a little too much activity. I did too much bending to plug in equipment. I did a little too much fast walking, rushing to get things fixed for a meeting already in progress. I had a little too much worry, spending a lot of time concerned about things I couldn't really control.
Then I had my medicine.
My medicine is a miracle drug for me. I believe strongly that I would not be as mobile and active as I am, even with my limitations, were I not able to take this medicine. It is a pretty strong drug, though, and must be carefully monitored. With the monitoring, the IV infusion takes about 3 hours. I usually miss about an hour and a half of work each month for the medicine. Although I make it up by working late throughout the month, and just getting my projects done in general, I am still out of the building when teachers and students are not. I typically try to have the infusions on Friday afternoons, since that's a time during the week that tends to have the fewest things missed if I am out of the building.
This month, though, I opted to have my infusion on a Monday. We were out of school for a holiday, and I thought it would be good to avoid missing any work and take advantage of the day away from school.
No one reminded me of how much this drug affects me.
Since I typically have the infusion on Friday afternoons, I rest over the weekend. Resting on Saturday or Sunday afternoons is a part of our adaptation to having multiple sclerosis; in our family this is a normal, necessary part of life. So even though I know that after having my meds I'm more tired than usual, I usually think of the day of the infusion as a day I need to rest--about 4 hours after it's over, actually.
While this is true, and my body shuts down to deal with the medicine about 4 hours after the infusion, I've been reminded that two days after I have my medicine I am forced to rest. This is not just a case of being tired. Multiple sclerosis laughs at "tired." It laughs at "exhausted," even. The term used most frequently is "fatigued"--as in MS fatigue, which is one of the potentially debilitating affects of the disease.
After my medicine, my body took MS fatigue to a new level. The boys got to stay home, because Mommy couldn't get out of bed (Tyler was also dealing with the after-effects of a migraine and Shawn was feeling poorly, so staying home was actually a good thing for them, but when I'm being honest they stayed home because I had to). Mommy couldn't move. Mommy absolutely, no-questions-asked, do-not-pass-go-do-not-collect-$200 had to rest. With the drugs doing their thing, my body told me it was out of order while the repairs were taking place. Because I had tried to force it without that rest, they had more work to do, and I had a harder time recovering.
As the day drew to a close, I returned to normal. The fatigue lessened, and I was able to get out of bed. We didn't make it to choir, but were able to get back into routine the next day. By the weekend, I was feeling great again.
I've rescheduled my next medicine, though. We may be off on a Monday the week of my February medicine, but I'm not taking any chances; I'll have my medicine on a Friday afternoon.
Hopefully, I've gotten all the reminder I need to rest 4 hours after and again 2 days after my miracle drug. If not, I'm open to being nagged/reminded in the future.
Have you ever had a time where you were strongly reminded of something the hard way?
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