“I hate your MS Mommy”

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Well winter came much earlier than we wanted in Saskatchewan.  It snowed here so much we beat a snowfall record that was last made 100 years ago.  Today is another snowy day so I thought it was a good day to get caught up on my blog. 

Lately my children have noticed with the weather getting cooler outside how my pain gets worse with my nerves especially in my legs.  I had to search for my long johns the other day as I find keeping my legs warmer and layered up helps this nerve pain a bit.  I am also taking many hot Epsom salt baths to help with the leg spasms.  When it’s a cold day like today is I also don’t like to venture outside if I don’t absolutely have to.  Sometimes this means that we might have to miss an activity or an event the kids want to go to.  I know they understand if I have to cancel or reschedule if I am not feeling well that day but it doesn’t mean I don’t feel guilty about it every single time.   

When these types of situations happen I try to talk to my kids about their feelings because I don’t want them to keep their frustrations in.  My son has said to me before “Mommy I hate your MS”.  Which I reply “I hate it too”.  I think it’s important when our children are older and understand this topic to talk about it with them on how they are feeling.  If my children ever got to the point I felt they were holding back from me I would look into them being able to talk to another family member(with me not physically there) or the schools also usually have guidance councillors.  There are child Phycologists they could also talk to who specialize in children whose parents have an illness that your family doctor can refer them to.  It’s hard to know sometimes when we need to give our children the space or distance to process something or when we need to encourage them to talk to us.  I think not only with a Mom with MS this can be challenging but any mom with any illness or chronic pain issue would come across this challenge. I have tried developing the roots already and I know this takes time so my children can be open with me no matter what they need to talk to me about. Even if that turns out to be something I don’t want to hear.  

If any other moms out there have any good tips on how you handle these situations when your family plans have to change due to your MS flaring up feel free to comment below my Blog I would love to hear from you.

Stay warm this October wherever you are,

Michelle

 

Where Do Kids Go When Mom Needs MRI?

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For any of you who don’t know, this is an MRI machine…it is basically a giant loud box that we slide into after we lay on that padded part and our head is gently (but firmly) clamped down so that we can’t move it. Sometimes we get an IV attached too for various reasons involving contrast and probably other reasons I don’t know off the top of my head. Once all that has happened, the whole part we are laying on slides into that hole, a kind of dark cave withing the machine, where we stay for as long as they require to get the images they need. We spend anywhere from about 20 minutes to more than an hour in there holding as still as we possibly can.

My kids, are finally at an age I have times that they are in school, and so I can schedule MRI’s to happen at those times. It was not always like that though, for example when I was a single mom and my daughter was a baby, I did not have time like that. Except for the times when I was working and she was in daycare, of course I couldn’t really go get an MRI then because I had to be at work!

I am curious to know what everyone else has figured out. For me, I mostly didn’t get MRI’s when I had young kids, sometimes I did but I recall it being pretty stressful to get someone to watch my little one(s) while I spent time in the tube. I am very fortunate to have supportive family via marriage, though I know that is never a guarantee.

Do you have family support? Daycare? Babysitters? Has it worked for you? Did you try to get help from any MS related organizations?

Thank you for taking the time to let me know!! You can also send me a message if you want to share privately, you can comment and ask that it not be published and I will reach out to you. If you are member on the private site you can also login and comment there if you prefer as well.

My buddy, my pal, my friend.

As a parent, you work had to protect your children and give them a childhood free from the challenges and responsibilities that come from adulthood until it becomes time -preferably when they turn 18 and leave the home. But for me, I never thought the tables would turn before I reached my 35th birthday with the diagnosis of my MS.
My life story may be long and complicated, but the real hero of my story has been my daughter, Becky. I never realized how important she would become to me, not only as a 20160229_193909friend but as a caregiver to me and her brothers. As a child she witnessed me being abused by my ex husband, she saw me struggle as a single mom that was homeless with 2 young children while trying to get back on my feet. Then I received my diagnosis 2 years ago, and she was the one who came to the rescue to help me when I had a husband who was dealing with his own demons. She cooks, cleans, manages to keep straight A’s and prepare for high school next year while keeping up with her 3 brothers -2 have ADHD and require constant supervision. From the very beginning I chose to be honest and open about my diagnoses. She went with me to pharmaceutical dinners, I provided her books from the NMSS that were geared towards teenagers to help her understand what I was going through and how it would affect her. She has had the hard task of explaining to her friends why she can’t hang out with them sometimes or why she has more responsibilities then they do. Never once has she complained how hard her life is. I have moments of guilt with her doing so much for me, but I love her and give her more freedoms as reward for her hard work. I’ve had a long talk with my daughter about her life and learned the hard truth that my life has been MS first and family second. My own daughter felt unable to tell me how she felt and be selfish with her life because mom has always come first.
MS is part of my life but it doesn’t have to be a us priority. We need to never forget that our children are “living” with MS too. They may be hiding their true feelings because they think we are too tired and don’t have time to listen to them. Take time to have mommy and me time. Do something special for your younger caregiver to show that they are loved and appreciated. <3

Happy New Year to my fellow MS Moms

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The New Year gives us a chance to reflect on the past year and be thankful for what we do have in my lives.  When you have a chronic illness like we do everyday we wake up and feel well enough to get through the day is a blessing isn’t it? We often might find ourselves making goals for the new year that are unattainable thus disappointing ourselves if they don’t turn out. I like to be realistic and set one goal because I found this is more doable. This year I am sticking to my goal of being more active as I can (or that my MS will let me of course) but I am a big believer that “if you don’t use it you will loose it”. So for one with mobility issues such as myself this means I am walking with my aids as much as I can to keep my legs moving. Others might only have the option of using their arms more now and that’s ok as long as you do something right? One of my  Dr’s who is practiced in Functional Medicine once told me avoid being sedentary. You could grab a water bottle and do some curls for about a minute every hour.  Some other activities may include walking, stretching, or trying a mindful workout. This means 10 minutes of quiet time to your self without distractions. I know this is a challenge in my house because with young children when do we actually get quiet time?  But really trying to make quiet time for even for 10-15 minutes a day for you can do wonders.

No matter what stage of illness we are in, whether we’ve just been diagnosed or we have lived with Monster for decades, there are adjustments we can make to increase the joy in our lives and to live more fully:)

 

Until next month take care of yourselves,

Michelle

Are any of us really ready for this?

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No one can prepare you for the difficult and/or awkward questions that your children may have about your MS.  I have had the MS diagnosis before I had children so they have grown up with this and not known me any other way but many of you have been diagnosed after and both scenarios have their own sets of challenges. I was still afraid for this day to come and dreaded the tough questions but it already has already happened in my household.

My children have asked

  • “Mommy will you die?”
  • “Mommy will you always have MS?”
  • “How did you get MS Mommy?”
My best advice is to be honest but to keep the facts age appropriate when you are talking to your children.  My children are young so I didn’t want to scare them. I was worried about telling them too much or not saying enough. I just trusted my gut instinct when doing this because no one knows my children better than me right? I did some researching on the internet for some helpful advice so I was prepared beforehand but as best prepared as you try when it comes to children and asking questions expect the unexpected. Are any of us really ready for this?
I just typed this topic into the search engine and pages of websites came up but here are a few example
Top three traps to avoid I would suggest are
  1. Avoid using medical terms they will have no clue what they are and it just confuses them
  2. That MS is NOT contagious and they can not get it by kissing or hugging you
  3. There are researchers all over the world that are searching for a cure everyday
Whenever I have had to explain anything important to my children I try to end whatever conversation we are having with a positive one so that they are not scared or worried when we are done talking. I reassure them that we take our lives one day at a time and enjoy it as best we can. We don’t waste our time or energy worrying about “what ifs” in the future. I sympathize with you if you are going through this right now because when it comes to our babies we want to shelter them from anything scary.
Do those of you who have been in this situation before have any advice for our Moms with MS family? Please feel free to make comments under my blog I would really like to know how others have handled this.
Regards,
Michelle

Talking to Kids about Multiple Sclerosis


As moms who are diagnosed with Multiple Sclerosis this is something that we all deal with. There are of course variances in how and what we share of course too because we are all different. Some tips are published by various Multiple Sclerosis (MS) Organizations as well and will be linked to in this post. Here are some stories and resources compiled from moms on and off our site:

When my daughter asked me what MS was around age 4 I explained to her mommy has little squiggles in her brain that make her do funny things sometimes. She asked if they hurt, I said no and I could tell how much more at ease she was from then on when I was struggling.
Heather

Another mom spoke of a program offered once where there was an informational session called MS Journey that had therapists and activities to talk to the kids about it in one room, and the caregivers/spouses/partners were in another room. There was a lot of advice and tips for talking to kids given and the adults were able to voice their fears and frustrations. Wouldn’t it be wonderful if this were offered regularly for all of us families dealing with MS?

Some places have some camps for kids too, if you are interested in this contact your local chapters of NMSS, MSAA, and MSF for information.

Pharmaceutical companies have some advice too, for example on MSLifeLines (Pfizer).

Here is one book that is available, written by a mom, Stefanie Lazai to help other moms talk to their kids. You can go to Benjamin and see the book online, and either listen to it, or read it aloud to your child.

Some other books available online as .pdf’s or to order:
Mommy’s Story (from MSAA)
Daddy’s Story (from MSAA)

For older kids they can read about MS and other conditions on this site:
http://kidshealth.org/kid/grownup/conditions/ms.html

Personally I don’t like utilizing these resources, mostly because I have very few symptoms and when I do they don’t usually last very long. I don’t want my children to worry. If anything does come up, I explain to my kids (who are pretty young) that my body is simply not working right, and that hopefully I will feel better the next day. – Kristin

Another great resource is from DoingWheelies.com by Jenn about Tips for Talking to Kids about Disabilities. It is not specific to MS but it is very very relevant for all of us to talk to our kids about this because whether they see it at home or not, it can help them understand.

National Multiple Sclerosis Society has this page set up for families as well: Family Matters.

Please share any tips or resources you have to share in the comments!

MyMommyHasMS