When Your Appearance Matters to Your Child

My typical outfit for the last 11 years has been jeans, a t-shirt and something to cover my head due to alopecia, typically a bandanna of sorts or something like what cancer patients wear when they do chemo. I shave my head so that the significant loss of hair due to alopecia doesn’t break me every time I look in the mirror.

When I drop off my kids and pick them up I am in my usual attire, that’s what I am comfortable in, when you work in IT and they let you wear it every day you get used to it. Depending on how I am feeling I may wear a “nicer” top when going to events at the school (parent/teacher conference, back to school night).

I volunteered at my second graders school for one hour this week. It consisted of sitting on a stool next to a filing system where the kids school work goes and then putting those papers in the corresponding folders. Easy enough for my wonky brain and broken body, though I must admit that doing that for an hour, as simple of a task it may be, actually wore me out. I felt more foggy and fatigued than usual but my kid was so excited I was there.

That being said, and knowing that I already draw attention with a service dog, I put on a more business casual top for that day and my son picked out what was going on my head. He did not approve of the plain black scarf I was going to wear tightly around my scalp with a knot that made it look like a bun at the back.

He is keenly aware of appearance at the ripe age of 7. Most recently he likes to check himself out in a full length mirror attached to a cabinet in the living room where we keep the snow gear. He wears light weight jackets around his waist like an accessory, and makes careful selections about his shirt each day. I expect this from my 13 year-old, I wasn’t prepared for it from my 7 year old.

The oldest made a comment the morning I went to volunteer asking  me where I was going because I was more dressed up than usual. While I would like to think people should just accept us how we are, fashion choices and all, I know that is not the world we live in. It saddens me to think that what I may be wearing will have an impact on how classmates treat my son, it doesn’t make sense and yet that is the world we apparently live in.

Until the world changes, I will continue to let my kids advise me on attire when I am attending something with them or at their school because I love them and don’t want their life to be any more complicated than it is having a mom with MS, Meneire’s disease and a service dog.

Mental Health – In The Beginning

This week, as I wean off one anti-depressant so I can start another I find myself thinking about mental health more.

This is a hard subject for me, which if you’ve read my other posts that are full of personal information, you’re probably wondering why.

This will be my next series of posts, there is far too much to tackle to fit it all into one blog post.

I’ll start by sharing that one of my close friends completed suicide the summer before my freshman year of high school. It made know sense to me, we talked nearly every day on the phone that summer. He was in the ICU for some time before finally passing. While his pain was gone, my pain and confusion was just ramping up.

That summer I had also been passing out and having seizures which required a lot of tested and many medical appointments. So here I am, a 13 year old girl, dealing with a death and possibility of a pace maker in the same summer before entering my fist year of high school. One of these things is stressful enough, I’m sure you can imagine the toll three of them plus pubescent hormones had.

I remember one day at school was too much for me. I started hyperventilating, I cannot remember if I actually passed out but I do know that EMTs came to my school and I was lying of the ground in front of my locker with an defibrillator device attached to my chest.

That is when we had to tell everyone that if I pass out there were specific steps to take to bring me back and not to call 911. Embarrassed and traumatized from this mortifying event I found a place to lay every time I got dizzy or anxious after that.

Next post I’ll discuss stigma with mental health.

Summer Heat and Multiple Sclerosis

Summer time brings to mind beaches, swimming, vacations, outdoor activities with your children. For those with MS, it means that but it also means cooling vests, air conditioning and if your MS gets aggravated by the heat, increased symptoms. This effect was first noticed in 1824 when Charles Prosper Ollivier d’Angers put a patient in a hot bath and noticed worsening symptoms. Wilhelm Uhthoff noted that this not only occurs with patients in a hot bath but also with increased core body temp due to exercise and activity.

“Demyelination produces alterations in saltatory conduction, slowed conduction velocity, and a predisposition to conduction block. An estimated 60–80% of MS patients experience temporary worsening of clinical signs and neurological symptoms with heat exposure.”  In addition, lesions can occur in parts of the brain that manages temperature regulation.

A report on hypothermia in MS lists different MS patients who died due high temp levels and the inability to regulate their temperature. A temp of 32 degrees Celsius (89.6 Fahrenheit) caused the death of a female MS patient in her early 60s  in 2018. I feel this is not discussed as often as it probably should be. At minimum I think the doctors should be advising their patients of possible issues rather than finding out on their own. There are people newly diagnosed that don’t do research because they believe their doctors will tell them what they need to know.

“Fatigue during thermal stress is common in MS and results in decreased motor function and increased symptomatology likely due to impairments in central conduction.”

How this shows up for me means no hot coffee, hot beverages increase my core body temp so even in the winter I drink iced coffee and iced tea. My house is set to 74 degrees Fahrenheit during the warmer and hot months. When the ambient temp reaches 75 all of the nerves in my body react, electricity pulses through every nerve causing a ridiculous level of pain.

Things that can help cool you down after exposure to heat or increased core temp are frozen treats, ice cubes, ice packs on your body, cooling vests, very cold drinks, and cool showers are some that work for me. I choose to spend the hotter parts of the day and season in side where I can regulate my body temp because sometimes it is days before my body recovers from over heating.

I have tried several types of cooling vests, all are meant to be worn close to your skin under your clothes. The cotton vest which the style is most like a regular vest in style is fine when you put it on but once it is no longer icy it is just very heavy and bulky. I tried another that used columns of ice packs in a lighter weight style vest, but it was still bulky under clothes. The most recent one I purchased is made of the wicking type material used in sports clothes so it is light weight and does not add a bulky layer of fabric when you are trying to cool down. It is a little longer than a sports bra and uses columns of ice in pockets; this allows you to add as much or as little columns and you need and can be replaced fairly easily. It fits ok under a sundress so while it will still be noticeable it looks more like a bra than a weird accessory and replacement columns are small enough to fit in a lunch box sized cooler if you are going to be out for the day.

Sources:

wcmea_newsletter_fall_2010

Hypothermia in MS

https://www.physiology.org/doi/full/10.1152/japplphysiol.00460.2010

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980380/

https://www.stuff.co.nz/national/100921402/christchurch-woman-with-multiple-sclerosis-dies-of-overheating

https://www.webmd.com/multiple-sclerosis/news/20150527/ms-may-raise-odds-for-earlier-death-study-finds#1

7 Strategies for Coping With MS Heat Sensitivity