Hi everyone,
I have been posting a lot because I have been having a lot of trouble the last few months, and I thank you with all my heart for your support.
I started this thread because I wanted to ask about family issues, namely: how do you protect your family from your MS?
I have two questions 1) I want to go to my daughter's first-grade Open House on Thursday but I will need a wheelchair and I will be on pain medication, and Ellie has never seen me like that, and I am afraid of scaring and/or embarrassing her. 2) My husband is starting to say things like he can't handle it any more, sometimes in a really angry way.
I have been very lucky. I have had relapsing-remitting MS for 8 years. I've only had one big relapse since my daughter was born and she wasn't old enough to understand it completely. It also wasn't nearly as bad or as long as this one.
I am in a lot of pain and my pain meds are not working well enough. I also discovered today that I needed to use a wheelchair to get to my MRI. I have been weak and wobbly and staying in the house the last couple of weeks, but I didn't know I would need a wheelchair when it came time to actually walk somewhere.
1. My little girl's Open House
I have a little girl, Ellie. She is 6 years old and she started first grade when I was in the middle of this relapse. I got back from my MRI this afternoon after the wheelchair discovery and I was in a lot of pain, so I took a Percocet and a Clonzepam. I was still in a lot of pain, and in a haze from the meds, but I got to sit with Ellie on the couch and go over her first grade paperwork.
She was so excited to show me--13 out of 12 on her spelling test because she got the bonus word—and her new library book, and I saw it all through this haze.
I was too weak to give her her bath but I braided her hair and read her stories and then she and I lay in her bed with her nightlight on and talked. She told me she was mad because she was on a “yellow team” for a “memory game” and they’d lost the game because of a boy named—I’ll call him Lionel. She said, “Lionel is so stupid,” and I said, “oh dear,” and she put her hand over my mouth and said, “I know, it’s not nice to call someone stupid.”
And then she said, “Mom, promise me at my Open House you won’t say I called Lionel stupid.” She has her first grade Open House Thursday night. And tears started pouring down my cheeks—I couldn’t control it.
Because when I got out of the hospital and saw my neurologist I thought I would be better by Sept. 19th—it’s been two weeks. I didn’t think I’d be in perfect shape or anything, but I could not have imagined how bad things could get.
Anyway, it was dark and she didn’t know I was crying, and I said all my usual words I’ve said since she was a baby, ending with, “thank you for being my daughter.”
2. My husband is losing tolerance for my emotions and also all the hard work this is to try and get care.
Once Ellie was all tucked in, I went and found my husband and just sobbed and I said, “she still thinks of me as a mom who can go to her Open House.” And I told him that if I was going to go I was going to need a wheelchair. It’ll be crowded and bright and lots of parents and kids and I’ll need to be on pain meds, which make my balance bad anyway, and with how weak I was today, I just don’t see how I can’t manage with my cane to navigate it.
I am also afraid on the pain meds that I will scare people because of my half closed eyes and slow speech. And I’m afraid maybe the kids will make fun of her.
I just kept crying and my husband told me I had to get it together and he just couldn’t handle any more tonight.
Earlier today I was on the phone with my neurologist's nurse trying to explain that I needed help--I was trying to get another appointment and more/better pain medication, because I haven't been able to sleep more than 3 hours at a time at night and it's starting to wear me down. My neuro's nurse said it all depended on my MRI, and we won't find out the results tomorrow.
I told my husband and I said even if the t-spine MRI comes up clear (I have two active lesions in my temporal lobe, but these don't match my clinical exam, so my neurologist doesn't want to prescribe steroids) we need to come up with a plan to get someone to do something--I can't be in this much pain indefinitely. And he yelled at me and said I kept getting ahead of myself and let's just wait until this MRI, and then in the car he barely spoke to me, and it's a long drive.
My husband and I have both had to go on leave from our jobs because of this relapse, and it's been a real ordeal to try to get good medical care, and I know he's under a terrible amount of stress. But I still need his help, and I need him not to yell at me and/or not to not speak to me and just scowl and drive silently.
But do I have a right to need that?
And my selfish side wants to say, I counted and tomorrow it will be 50 days since I've been sick, 30 since I've been in constant pain and unable to sleep a full night, 2 weeks since I left the hospital thinking I would get better--and then not getting better--and HE is scowling and yelling and saying he can't handle it?
Maybe it is easier to suffer than to watch someone suffer. This may be true. Maybe I am so taken up with the pain that it protects me from feeling things fully.
But I don't know what to do. I want to be there for my little girl. I want to go to her Open House, but I don't want to do it if it's going to be a shock for her. And I don't want to be too hard on my husband; I want to make it easier on him if I can--I am sad that I got angry at him, too, though he doesn't know it. But what is happening is what is happening, and I don't know how to be stronger than I am already being.
I have thought a couple times--he didn't know what he was signing up for. I had my first big relapse when we were dating--that's when I was diagnosed, and then my second big one after we had Ellie, but it wasn't nearly as bad as this one. In the meantime, I felt the pain of MS--the day to day troubles--the fatigue, and the spasticity, and the slowing of cognition, and the blurred vision and tremors, etc., under stress or when I was underslept, but I functioned well--I guess what I'm saying is I was not a burden. I worked full-time and was physically active and was mostly the primary parent to Ellie, and that is what he has grown to expect, and now suddenly none of that is true.
And I hate it, but it is happening, and now I don't know who to be, or who I should be, or what is best for my family.
If you have any advice or stories to share, thank you!
Emily
I have been posting a lot because I have been having a lot of trouble the last few months, and I thank you with all my heart for your support.
I started this thread because I wanted to ask about family issues, namely: how do you protect your family from your MS?
I have two questions 1) I want to go to my daughter's first-grade Open House on Thursday but I will need a wheelchair and I will be on pain medication, and Ellie has never seen me like that, and I am afraid of scaring and/or embarrassing her. 2) My husband is starting to say things like he can't handle it any more, sometimes in a really angry way.
I have been very lucky. I have had relapsing-remitting MS for 8 years. I've only had one big relapse since my daughter was born and she wasn't old enough to understand it completely. It also wasn't nearly as bad or as long as this one.
I am in a lot of pain and my pain meds are not working well enough. I also discovered today that I needed to use a wheelchair to get to my MRI. I have been weak and wobbly and staying in the house the last couple of weeks, but I didn't know I would need a wheelchair when it came time to actually walk somewhere.
1. My little girl's Open House
I have a little girl, Ellie. She is 6 years old and she started first grade when I was in the middle of this relapse. I got back from my MRI this afternoon after the wheelchair discovery and I was in a lot of pain, so I took a Percocet and a Clonzepam. I was still in a lot of pain, and in a haze from the meds, but I got to sit with Ellie on the couch and go over her first grade paperwork.
She was so excited to show me--13 out of 12 on her spelling test because she got the bonus word—and her new library book, and I saw it all through this haze.
I was too weak to give her her bath but I braided her hair and read her stories and then she and I lay in her bed with her nightlight on and talked. She told me she was mad because she was on a “yellow team” for a “memory game” and they’d lost the game because of a boy named—I’ll call him Lionel. She said, “Lionel is so stupid,” and I said, “oh dear,” and she put her hand over my mouth and said, “I know, it’s not nice to call someone stupid.”
And then she said, “Mom, promise me at my Open House you won’t say I called Lionel stupid.” She has her first grade Open House Thursday night. And tears started pouring down my cheeks—I couldn’t control it.
Because when I got out of the hospital and saw my neurologist I thought I would be better by Sept. 19th—it’s been two weeks. I didn’t think I’d be in perfect shape or anything, but I could not have imagined how bad things could get.
Anyway, it was dark and she didn’t know I was crying, and I said all my usual words I’ve said since she was a baby, ending with, “thank you for being my daughter.”
2. My husband is losing tolerance for my emotions and also all the hard work this is to try and get care.
Once Ellie was all tucked in, I went and found my husband and just sobbed and I said, “she still thinks of me as a mom who can go to her Open House.” And I told him that if I was going to go I was going to need a wheelchair. It’ll be crowded and bright and lots of parents and kids and I’ll need to be on pain meds, which make my balance bad anyway, and with how weak I was today, I just don’t see how I can’t manage with my cane to navigate it.
I am also afraid on the pain meds that I will scare people because of my half closed eyes and slow speech. And I’m afraid maybe the kids will make fun of her.
I just kept crying and my husband told me I had to get it together and he just couldn’t handle any more tonight.
Earlier today I was on the phone with my neurologist's nurse trying to explain that I needed help--I was trying to get another appointment and more/better pain medication, because I haven't been able to sleep more than 3 hours at a time at night and it's starting to wear me down. My neuro's nurse said it all depended on my MRI, and we won't find out the results tomorrow.
I told my husband and I said even if the t-spine MRI comes up clear (I have two active lesions in my temporal lobe, but these don't match my clinical exam, so my neurologist doesn't want to prescribe steroids) we need to come up with a plan to get someone to do something--I can't be in this much pain indefinitely. And he yelled at me and said I kept getting ahead of myself and let's just wait until this MRI, and then in the car he barely spoke to me, and it's a long drive.
My husband and I have both had to go on leave from our jobs because of this relapse, and it's been a real ordeal to try to get good medical care, and I know he's under a terrible amount of stress. But I still need his help, and I need him not to yell at me and/or not to not speak to me and just scowl and drive silently.
But do I have a right to need that?
And my selfish side wants to say, I counted and tomorrow it will be 50 days since I've been sick, 30 since I've been in constant pain and unable to sleep a full night, 2 weeks since I left the hospital thinking I would get better--and then not getting better--and HE is scowling and yelling and saying he can't handle it?
Maybe it is easier to suffer than to watch someone suffer. This may be true. Maybe I am so taken up with the pain that it protects me from feeling things fully.
But I don't know what to do. I want to be there for my little girl. I want to go to her Open House, but I don't want to do it if it's going to be a shock for her. And I don't want to be too hard on my husband; I want to make it easier on him if I can--I am sad that I got angry at him, too, though he doesn't know it. But what is happening is what is happening, and I don't know how to be stronger than I am already being.
I have thought a couple times--he didn't know what he was signing up for. I had my first big relapse when we were dating--that's when I was diagnosed, and then my second big one after we had Ellie, but it wasn't nearly as bad as this one. In the meantime, I felt the pain of MS--the day to day troubles--the fatigue, and the spasticity, and the slowing of cognition, and the blurred vision and tremors, etc., under stress or when I was underslept, but I functioned well--I guess what I'm saying is I was not a burden. I worked full-time and was physically active and was mostly the primary parent to Ellie, and that is what he has grown to expect, and now suddenly none of that is true.
And I hate it, but it is happening, and now I don't know who to be, or who I should be, or what is best for my family.
If you have any advice or stories to share, thank you!
Emily
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