how do you protect your family from your MS?

[Emily74]

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

[hunterd]

Emily, I did not edit anything in this, I just hit the wrong button. Let me try to address your questions, #1 you did exactly the right thing by doing what you could. You braided her hair, looked through her schoolwork with her, and put her to bed. You may not think you are doing enough, but in her eyes you did! I went through exactly this same thing you are going through now when my kids were that age ( my youngest is now 12). The attention you show your daughter may not measure up to what you want, but what is important is what she thinks, if you are not sure just ask her what she wants. As far as the whole wheelchair issue goes, most of the time children will just be happy that you showed any sort of interest in their activities. At that age I used to let my daughter ride on my lap when I was in my wheelchair ( which was 24/7), and that made her feel special because she got to do something none of her friends did, and as she got older and was able to understand situations better, she was able to realize that even though I had to go in a wheelchair, I was at least able to participate ( albeit differently). Those are the things that will make her happy, you taking the time to show interest.

#2 all of your thoughts and issues I have had, as have many others, with or without MS. "Maybe it is easier to suffer than to watch someone suffer. " I think it is definitely easier to do this suffering myself, and I am glad it is not one of my children or my wife even though it is so very hard on them. Have you ever considered joint counseling to help you both address these issues? Marriage is hard enough without adding a chronic illness to it. If you would like we can discuss things further by e-mail, my address is in my profile. I wish you the best of luck.

[aspen]

Husbands are problem solvers. He cannot help you in any way, and this is huge for him. I agree that it is even more emotionally taxing on our husbands. He probably needs desperately to get back to his man-cave (work) where he feels useful.

I do NOT share everything with my husband at this point. I know he can't deal with specifics. I have a couple of friends I can vent to, get ideas from, cry with, etc. This is helping ... he is still frustrated but not responding with anger (not anger at me, but still, you know they are angry -- and I was very over-sensitive for a long time and am trying to work on that too).

If you have dxed ms, can you not get travel help from a local ms society? My understanding is that this is the sort of thing they do. As well, there are support groups, etc. Your hubby needs to get back to work for his sanity (and your income) ... it's time to widen your support network. There are sometimes community services that offer volunteer drivers (I have friends that drive folks to a neighbouring city for chemo appointments -- we live in a rural area too, so if you contact community services I'm sure there is something already established).

My current episode seems to be resolving ... just some leftovers hanging around ... I tried to remember this last time when I couldn't walk well/think/use my right hand that at this point, chances are I will be at least mostly well again ... hope helps :-).

[tracibk]

I agree, go to the open house in your wheelchair . Just explain to her that you will have to use your chair to go so it is not a surprise. She just wants you there. If she seems uncomfortable with it then you could contact the teacher, explain the situation, and try to set up a day after school you could go and see the classroom and her teacher.
Have you mentioned counseling with your husband? Just let him know that you understand that this (ms) is also very stressful for him but yelling/silent treatment is not helping. I wish you the best!! and remember this is a great place to vent and we all understand!

[rdmc]

I do NOT share everything with my husband at this point. I know he can't deal with specifics. I have a couple of friends I can vent to, get ideas from, cry with, etc. This is helping ... he is still frustrated but not responding with anger.

That is really good advice.

Someone gave me some advice, early on, and it was to not make MS the only topic of conversation (and I know Emily, you've been in a bad place recently with MS, and there are those times, when it is all about MS. and it can't be any other way) But as a general rule, we don't talk about MS much, my husband knows when I'm doing bad just from looking at me. And you'll never be able to get another person (other than another MS patient) to truly understand what you're dealing with by trying to explain it. Too much information just makes them frustrated with the disease, and it can be misconstrued as aimed at the MSer.

The other piece of advice was (and this will only apply once you get to a more even keel)...always do as much as you can, whenever you can (as in what you described with your daughter.) This way your spouse, and family know you're trying, and then in times when you can't do it they'll realize you're not doing something because you're not up to it at this time.

We're empty nesters now, so it's easier, but even when our son was home there were things that I usually did (chores around the house) but if
they weren't done, I wouldn't ask someone to do them, they'd either see it needed to be done and do it, or not do it, if it didn't seem important to them...and I had to get to the point where I didn't care if a particular chore was done...so I wouldn't nag. It was definitely a learning experience, but it became, over the years, a very graceful (seems like a good word because it feels like dancing, each knowing what the other is going to do) to deal with the disease w/out having to talk about it.

When I think of marriage, family, and MS (well any disease really) I picture a juggler, juggling bowling pins. It has to be practiced to get it right, and sometimes in the practicing we may drop a pin, or get whacked in the head with one...but you just keep practicing to get the balance right. (the discouraging part is when MS decides to add another bowling pin to your juggling act, just when you've gotten used to juggling the pins you already have.)

Hang in there...and keep coming to the board to unload.

[heliotrope]

I would agree with the previous statement about the open house. Definitely give the teacher a call/email and express your concerns. I would be surprised if he/she can't find a way to address a few of them, especially in regards to the students.

[Marco]

Hi Emily. You are the very reason MSWorld exists, “patients helping patients.” Your questions will certainly help others in similar questions. Hopefully, the responses you receive will be as insightful as your questions are thoughtful.

how do you protect your family from your MS?

A different question may be “How do you protect your family from life?” The answer is you prepare them for it. This is why schools have fire drills (and duck & cover drills for us oldies) to prepare just in case a fire happens. I think too often parents try to insulate their children from any disappointment or sadness and they are unprepared to face it in their own life. Think about college students that don’t know how to grocery shop, do their own laundry or manage their finances. I believe it is far better to help them understand the correct response to as many situations as possible including “bad” things. We just need to package the situation where they can handle it and not overwhelm them. (Example: you wouldn’t expect a 6 year old to cook a Thanksgiving meal, but they can certainly help with the place settings or escorting adults to their seat.)

Maybe tonight you could take her to get an “ice cream” and use your wheelchair. That would give her an opportunity to ask questions and also have her associate it with a positive event (ice cream, pizza, toys r us trip, or whatever). You may explain that your legs are “tired” and the wheelchair allows you to get ice cream even with tired legs. If your daughter is anything like you she’ll rise to the occasion. (side note: it’s your job to embarrass her … keep all those nutty photos of her to show at her bridal party)

Her teacher should also be your advocate ensuring she isn’t teased or can help her answer any questions her classmates may have. The school should definitely be a resource for knowledge and assistance. They should prepare you with information (the best exit and the closest bathroom) to make your evening more pleasant.

It’s really ok that you could not give her a bath. You might consider transitioning to her doing the bathing and you doing the supervising to conserve your energy. Maybe you could also ask Ellie to show you her spelling test again when you aren’t in such a haze. Maybe she could read you a bedtime story from her new book to “help you sleep.”

My husband is losing tolerance for my emotions and also all the hard work this is to try and get care.

I am glad you are addressing the pain situation with your doctor. You really have to stay ahead of the pain cycle or it can spin out of control. You may need to change medications to find something with more benefits and lower side effects. You may need to take a smaller dose during the day to help control it and a larger dose at night to hopefully eliminate it. In certain situations, I might lower my pain medication to take the edge off without making me loopy.

It’s hard watching someone you love in pain or in a losing struggle. I often believe my wife has the harder job having to watch me without being able to “fix” me. There are times when she’s hit her limit and I might need to hold something over to the next day.

You and your husband are not the first in this situation and you certainly are not alone. The MS Society has family resources that may help. MSWorld has scheduled chats for caregivers that may help. The value of a good family counselor cannot be understated. You may find a resource at a local church or MS support group in your area. You might even invite a family member or friend to spend a few days with you to provide help and support. This is a time in your life where you should be asking others for help. Some people may not be receptive to helping you ... this could also be disappointing so use discretion when asking.

You absolutely have a right to have needs and to need him. He also has a right to have needs and to need you. It’s a partnership and you both are trying to survive in your own way. My wife and I had to learn to make requests the other could understand. She may say, “can I please say something and you just listen?” I have asked, “Is this something you want me to try and help you fix or you just want me to listen?” This stopped a lot of needless pain and angst in our relationship. It shocked me that she would bring a “problem” to me and she didn’t want a “fix” … I still don’t understand it, but I am closer to accepting that is her need.

Most men are not prepared to deal with a continual onslaught of emotions because that is foreign to us. I’m sure your husband would love to go to a tool box and pull out the “fix wife” hammer, but that tool simply doesn’t exist (nor does a “fix husband sledge hammer”). You will need to learn to negotiate each other’s needs in a new way. Remember you BOTH are in the grief cycle, in need of love and help, but there is no one on earth better for you than him and vice versa.

When I first got married my wife would regularly ask me “are you mad at me?” This was almost always when we drove because I was silent. I never was mad at her, I just didn’t have a pressing need to talk. When stressed I also have a tendency to become quiet as do many men.

There is a difference between being quiet and “stonewalling” which sounds more like what he is doing. I’m sorry. Stonewalling is a horrible mechanism that many men use … I am guilty of it myself. It really sounds like he is overwhelmed and could use a good counselor or friend to serve as an outlet. I have a lay minister from a church I do not attend spend 1 hour with me each week. He picks me up and we share a meal or drink and he is part of my support team.

I again want to thank you for sharing part of your life with us. In responding to you, I just fell in love with my wife all over again. She’s my treasure from heaven, just as you should be to your husband. I hope you can communicate with him and focus on your common grounds instead of your current differences.

[Windwalker]

Childrens attitude toward disabled...

I will comment on this issue. To the extent possible with a child so young, explain that sometimes you get sick and that makes you need a wheelchair.

Teach the child that there is nothing "bad" about needing a wheelchair. It helps people who are sick...like you are. We must raise our children to not be embarrassed by our disability. In my case, the challenge was much harder with a 13 year old girl. I still teach it. It's known that it's the behavior I expect...to not be ashamed or embarrassed but to be caring.

There is already a huge stigma towards the disabled in our society. The children of the disabled should be leading examples of how to treat the disabled.

Concerning the adverse effects of the med's, take less for the time being than an amount that would make you slur and look "out of it". I have been in a W/C 3 years and also have constant pain and discomfort...I come from a place of understanding.

[onlyairfare]

I'd offer a different viewpoint.

If it is stressing you out this much, don't go to the open house. Your husband can go and "represent" the family while you stay home and rest, and take as much pain meds as you need to be somewhat better than miserable, instead of worrying about what others will think..

Your daughter will not be the only one with one parent present. There are many single parents. There are many parents who work evening or night shift and can't go because they are at work. There are even kids who have parents who don't care enough to attend. Ellie knows you are not one of those uncaring parents.

As for your husband, well that is something very specific between you two. Though we married "for better or for worse, in sickness and in health," I tend not to say much to my husband about my MS issues. But we have been married a long time and I have had MS a long time; he tends to know when something is up with my MS whether I say anything or not. Also, I am not significantly disabled by my MS and we no longer have young children at home, so I am rarely in need of a lot of care.

The concept of "Do you need me to fix something or do you need me to just listen?" seems like a good one. Two completely different needs. Don't let your wires get crossed on that point.

[gbash]

I agree with onlyairfare in that you don't have to attend the open house. You can have your husband and daughter take video of all that's being shown, and then have your daughter show you the video later while she provides the commentary. In that way, you can possibly take better care of yourself during this trying time and still be able to interact with your daughter about school.

[KitOP]

Hi Emily,
It looks like you have gotten some really good advice from our members.

I would like to offer this information to perhaps help your daughter, even at her young age, understand that Mommy doesn't always feel well.

This is a little booklet from MSAA, I have actually seen this and sent it to someone. I thought it was great. You can order a copy or download it as a PDF file from MSAA. Here is the link:
http://mymsaa.org/publications/mommys-story/

I wish you the very best Emily. And you know that you have a family of friends here at MSWorld that are ready, willing, and able to listen and to support you.

[regi girl]

Dear Emily, I'm not going to add to the already wonderful advice everyone has given you, but I will move you 13 years forward to the future.

My youngest son is a great baseball player and is going to college on a baseball scholarship. He also played football and basketball and was very good at those too. I have not been in a wheelchair, but I am on a cane most of the time. I was also a single mom.

After most games I did not have the strength to stand myself up, but my beautiful son would come over after the game and help me up, his coach never scolded him for not going directly to the dugout with the other players. Many times my son left his friends to take my other arm and help me out of the gymnasium or the football field. He was never ashamed of his mother and her cane.

I stood on the football field alone with my cane on Senior night while he presented me with a rose.

I was there for his scholarship signing.

I was there when he caught the winning pass at the state football playoffs.

But I was not there for every game. I was not there for some of his greatest plays, the other parents had to tell me about it. I was not there for a couple of state playoff games. I was not able to go with the team to Disney World like the other parents. I wasn't able to take pictures of him and his date at his senior prom because I was in bed, too sick to get up. I will not be able to be at all his college games. I will not ever be able to do everything, but that's ok because raising this wonderful young man who is so thoughtful and has empathy for others and always checks on his "Momma" is a great reward.

My wonderful son has just started his second year of college and has decided to go to Medical School so he can help people to run again because he remembers when he was little how much I loved to run before I was sick. He feels he'll be a better doctor because he's "lived" the disease. Yes I cried my eyes out.

What you do for your daughter will be far more important to her than what you are not able to do. Trust me, you will teach her far more valuable lessons and life skills then other parents.

I have not always handled this disease bravely and positively but it doesn't matter how you cross the finish line as long as you finish.

My heart is with you, I've been through a lot of heartbreak with this disease, this is the place to come to when everything is just too overwhelming, everyone here understands.

Just remember "This too shall pass."

[bree2013]

Thinking of you...

Emily, you received some good advice from quite a few people. If you can, please let us know what you decided to do.

I'm sorry for the tension that exists between you and your husband. As others have said, men want to fix things -- make it all better. When they can't, it's very discouraging for them; plus the fact he sees you -- especially these past few months, in extreme pain and frustration with all you've been dealing with.

Regi Girl - As I said, your post also brought me to tears (and I'm at the library right now ). The image of your son walking over to help you up ... acknowlege you ... WOW, powerful! He wants to be a doctor -- we need more doctors with such compassion.

Thinking of both of you (and many others) dealing with the struggles of MS and raising young families -- it reminds me how fortunate I am that my MS is just raising it's ugly head and my kids are almost grown.

I also want to thank those who take the time to post. Personally I have learned so much from many of you. From words of encouragement to straight-to-the-facts information, I find this site extremely valuable.

Bree

[aspen]

Reg-girl ... this is such a beautiful post. You've made me cry :-). What a beautiful relationship you have with your son.

You both are blessed.

[KatieAgain]

I will comment on this issue. To the extent possible with a child so young, explain that sometimes you get sick and that makes you need a wheelchair.

Teach the child that there is nothing "bad" about needing a wheelchair. It helps people who are sick...like you are. We must raise our children to not be embarrassed by our disability. In my case, the challenge was much harder with a 13 year old girl. I still teach it. It's known that it's the behavior I expect...to not be ashamed or embarrassed but to be caring.

There is already a huge stigma towards the disabled in our society. The children of the disabled should be leading examples of how to treat the disabled.

Concerning the adverse effects of the med's, take less for the time being than an amount that would make you slur and look "out of it". I have been in a W/C 3 years and also have constant pain and discomfort...I come from a place of understanding.

This is a great statement Windwalker...really great.