Explaining Multiple Sclerosis to Children

If you’ve been reading my blog for a bit then you know I have two sons, 13 and 7. I was officially diagnosed with MS when when they were 8 and 2 but I had been experiencing issues for so much longer.

How do you go about talking to your kids about MS, the future and changes that may happen? There’s no protocol to follow about informing your children about this disease. You want to prepare them but not scare them. You need them to know certain things (depending on what your own MS looks like) but also not make it look bleak.

For me, I have always told my kids up front what is what, I realized later that slowly easing into it would have probably been better. I like to have all of the information and possible outcomes and I assume everyone else does too. I didn’t think that through though because at the time I was in a whirlwind of information, my new reality and trying to figure out what course I was going to take. I was in crisis management mode.

My oldest was worried, he is less so now thankfully, and as my youngest grew I bought books on MS written for kids. It helped, there were words and pictures in front of them discussing the science of it and what it looks like for different people.

I am NOT being paid for this information, I just want other people with MS to know what I have found helpful.

  1. Sometimes, M.S. is yucky by Kimberly Harrold, this book is short and goes over the basics with illustrations that children can understand. In the back of the book there is a section for adults to read through prior to reading it to a child so they can know kind of what to expect from kids and questions and the best way to discuss it. (This book could be read to younger children, maybe even 3 years and kids you might feel will be overwhelmed with information. The illustrations in this book is a mom and child, medical people and does have a mom in a wheelchair)
  2. My Mommy Has Multiple Sclerosis (Gail’s Story) by Rebecca Clary, this book’s illustrations are animals, the mom is a giraffe and an elephant doctor. This book also discusses symptoms that may come and go and what it looks like. The author is a mom who has M.S. and in the back there is a kid friendly glossary.
  3. The Electrifying Story of Multiple Sclerosis by Vanita Oelschlager, this book is for older kids as it goes more in depth of the science and loads of different symptoms that are not addressed in the previous two. I would say 9 would be a good age for this book but my 7 year old has read it on his own and I previously read it to him, but he’s like me and likes all the information possible and asks lots of questions. This book is detailed but also simple enough that your average reader can understand. I am not even sure if this book was aimed at children, but my kids liked it for the details. I plan on using this book when I discuss invisible illnesses with my youngest cub scout den.
  4. MS Children’s Book by Zac Raasch, this book discusses MS as though it’s a monster. (MonSter), I know this is a way that some people address their MS and this would be good for those people. The book is easy to read and goes over the basics in a child friendly way.

All four of these books are good, my children found them helpful. I would say if the child is over 9 or 10 though just go to the third book as the other three may seem to young for them.

Have you found anything to be helpful when discussing this with kids? I am always open to new ideas.

 

The Negative Impacts of Keto

In my research, I do research especially for changes I plan on making or medications I will be taking, I look for the weird and less likely things that may happen. I look for these less common side effects because I am usually the weird person who gets them, it’s happened to me on several medications where the things that happened were “rare” side effects.

So before thinking about trying Keto for my brain and body and multiple health issues I wanted to find out what weird and wonky things may happen if I did.

“Keto Flu” this is the most common thing to happen to a person who changes their eating habits to a low carb, high fat diet. The severity depends on how much of the processed foods, simple carbs and simple sugar you were consuming in before changing. Awesome, this one will definitely suck because I love soda, ice cream, potatoes and bread… sigh.

It’s called the flu because that is what it feels like, fatigue, dizziness, headaches, stomach pain, brain fog, muscle soreness, confusion and trouble sleeping. Hmmm, maybe it won’t be so bad because I have all of these things most days already. This happens to your body when you stop giving it easy to burn simple carbs and sugar, because now it has to work so much harder. Symptoms usually start the first or second day and can last up to a month.

From this article it states “As soon as insulin levels drop, sodium is released from the body, taking water along with it. This can cause up to 10 pounds of water weight to be lost during the first 5 days of the ketogenic diet.” It is important to remember to take in salt while on this diet so you don’t get dizzy and pass out (trust me on this one because I did a regular low carb diet in 2014 and blacked out at a movie theater and fell down a bunch of stairs).

“Keto Rash” itching and rash, when it happens it is symmetrical. It is caused by the reduction of carbohydrates and is caused by ketones in the sweat. The easiest and fastest way to resolve this is by bumpong your carb intake up to 50mg (supposedly you still have benefit, perhaps just a touch slower). The other suggestions include comfortable clothing and shower after you are done sweating since the theory is that being on such low carbs causes ketone body acetone in the sweat.

“Keto Breath” can happen during the keto flu or really any time. It is not just from being in ketosis, any low carb diet can cause this. Not everyone will get this, I have noticed dry mouth more than anything and I am drinking more than 120 ounces of water a day so I keep sugar free gum in my purse.

When you increase your protein intake it creates more ammonia to be excreted from your body, this can also cause changes to your breath.  Solutions can be drinking more water, change the balance of your protein intake and adjust the amount of carbs you consume.

“Hair Loss” this one is rough for me since I already have alopecia, but apparently after being on keto for a couple of months you can experience more hair loss than usual. This will happen in the people who lose a significant amount of weight and will grow back once your body adapts to the new way of eating. Check out this link for some good science information because she has done all the research and I really like the information on her blog.

 

 

 

https://www.ruled.me/keto-flu-remedy/

https://www.dietdoctor.com/keto-rash-people-itch-low-carb

The solution to keto breath – an annoying low carb side effect

https://www.verywellfit.com/is-your-low-carb-diet-giving-you-bad-breath-2242075

https://ketodietapp.com/Blog/lchf/why-am-i-losing-hair-on-a-keto-diet

 

The Difference Between Friend, Good Friend and Great Friend

I never thought of friendships as having levels. I have friends, two best friends (based on length of friendship and history) and acquaintances.

When searching online, there are only differences between “friends” and “best friends”. Based on what I read, I disagree with those. It discusses honesty, having your back, supporting you among other things, it also says if your best friends you talk every day. While I consider my husband one of my two best friends, and I do talk to him every day, my other best friend I do not talk to every day but I have known her for more than 20 years and I know that it will always be an easy conversation filled with love and support.

If you are my friend, I will do what I can when I can to support you and be there for you when you need me. To me, friendship is being honest, caring, helping and perhaps even doing things that make you happy even though there may be physical and mental consequences for me after because of my Multiple Sclerosis.

There is no difference in the type of friend I am going to be to you, I will be your friend, the only way I know how. There will not be any difference between a friend of a year and a friend of 5 years, there will be no difference. You will not get a regular friend one day and 6 months later a good friend and perhaps two years later a great friend.

I am not religious but there is one thing I follow, and they learn it in girl scouts too; treat people how you want to be treated. It’s simple, if you want your friends to be there for you, you start by being there for them. I am here for my friends, I will support and assist you whenever I can. It could be as simple as taking your kid to school for you because you have scheduling issues or being in your wedding.

No relationship can last if one person is constantly giving and not getting anything back. I do not mean material items, I don’t mean same level of helping either. If you need me to grab your kids from school because you are having a bad day that doesn’t mean you have to do the same thing for me. It could mean that when I want to talk or get an opinion you are there for me, being a friend.

It’s odd, I was told I was a “great friend” by a couple of people recently because I was in my dear friend’s wedding even though there were consequences for me after. Yes, I had to drive, yes, I had to talk to a lot of people, yes, I stood in the heat, yes she is my friend. That’s what friends do. I made adjustments to how much time I spent with people, I skipped the events the day before so I could be there for her. You know what, she appreciated it and she’s only going to have one wedding. Someone didn’t go to my wedding for a reason less than it having fairly significant impact on their person, when I look at my wedding photos I remember THAT, and they regretted it later.

So while my brain is tired, my body aches even two days later, I cleared my week following the wedding to properly rest to regain the limited mobility and brain power I had before. That does not make me a great friend, that makes me the kind of friend I think others should be. It didn’t even occur to me to not be there for her, it was more of trying to determine how much I could be there for her.

So here’s your heads up, if you are friends with me, you are going to get the whole me. There’s no difference in time, if I count you among the few friends I have I will be there for you whenever possible and however I can be. I hope you will be there for me too.

Do you think there are differences? Should there be?