Sensory Overload

Back in my teens and early twenties noise did not bother me. I used to listen to loud music, have the TV on in the background while I studied or wrote it was fine. Now, it makes me crazy and not in the sense that it is just annoying because I am old.

I am in my thirties, I am not sure if it’s related to my MS, Meniere’s or both as people afflicted with either complain of sensory issues. When I am trying to focus on one thing and there is noise or talking or a loud TV, music anything, I get actual nerve pain. This week I was helping my youngest son with his reading homework, he was reading aloud to me as I listened; my oldest son was talking to my husband who then came out and started asking questions. I lost my shit a little, I didn’t realize I was yelling in response until my husband said something, all I knew was that I was trying to focus my attention on one thing and then I was overwhelmed with sound.

For people who don’t have this issue think nails grating on a chalkboard (though that sound doesn’t bother me, probably from nerve damage in my ears), in addition to the feeling of that sound think of something that gives you uncontrollable shivers down your spine and go ahead and throw in some heart racing chest pain inducing feeling. I can’t speak for all people with sensory issues, but that is what it feels like to me. It’s terrible, when it’s happening I just want it to stop, but you cannot control the sound of everything around you if there are other people involved.

My therapist is always telling me to take deep breaths, mostly when stress hits me or my PTSD kicks up. It is a hard thing to remember to do, especially when panic sets in because your body has decided to revolt its surroundings. This thing happens to me way more than I would like, well actually I would like it to never happen so I guess that I would like to be able to control when. If I go out to dinner with my husband, the sound can become too much, out with the kids, or play dates, social events. The problem is that it is not consistent, it’s not every single time there is sound or only when I am doing a certain thing.

If you know someone with sensory issues, take a beat, they may be snappy because their body just attacked them and they can’t handle anything else at the moment. Ask before touching, because I have even had to explain to my kids that “light” touches are actually painful to me as it sets my nerves on fire.

How D.B. Woodside & Buffy are Related to My MS

D.B. Woodside played the principal on Buffy the Vampire Slayer, my favorite TV series (Doctor Who being second). Not only do I own all the seasons of Buffy and Angel, but my BFF and I used to have marathons with pizza when we still lived in the same state. When my husband and I were dating we watched the entire series. Because honestly, if you don’t like Buffy I am not sure we have that much in common. :p

I recently started watching Lucifer, in which D.B. Woodside also acts in, however, I could not place him. It was driving me nuts, and instead of making the most logical step of just IMDB(ing) him and putting it together I actually pulled up IMDB and showed my husband the picture and said, “what was he in?”. To which, my lovely husband replied, “he’s the principal from Buffy” and starts chuckling.

Bah! I should have known that, and then he informed me how funny the progression has been. He told me that for years whenever I saw him I would say “It’s the principal from Buffy!”, then it was “is that the principal from Buffy?” to which he apparently frequently told me no. And NOW, I watched 2 seasons of a show with him and was like “who is this”.

My response to this was of course, now you have something concrete to measure how much my brain is impacted because I keep telling you I am losing memories. I guess my beloved principal from Buffy was the next victim of this disease in my brain.

For me my cognitive decline is the symptom I hate the most, I can nap and sit places for fatigue and balance/walking issues but there is nothing I can do to replace the memories I feel that I am losing at a rapid pace. Forgetting an actor doesn’t seem like that it would be that big of a deal, but as you can see by the photo of Buffy Villains from Comic-con 2017 I am a HUGE fan.

What’s the thing you hate the most about your chronic illness?

When Your Child is Sick for No Apparent Reason

I think as a parent with a chronic illness that can be passed down to your children it always sits somewhere in the back of your mind. For me, as a mother who was not diagnosed until after I had both of my kids I am in a frequent state of concern about my boys.

For the past few months, my youngest who is six, has been more clumsy than usual, complaining of headaches, stomach aches and other vague feelings of being unwell. I always ask about the last time he ate, or pooped, or had water. Try to think if the leg wobbles are from growing pains, or other normal things before I let the slight panic set in.

I know the likelihood of him having MS, especially at six is low. Though I had it when I was 13 they say to me now, because the health issue I had that started during my freshman year of high school has been linked now. After denial for a few weeks and he started asking me if I could make a doctor appointment for him. Normal kids don’t ask to go to the doctor, I told him I would, but that they may need pictures or blood if they weren’t sure what was wrong. He said ok, I knew it was serious because he was both ready and willing to have his blood drawn in order to figure out what was happening.

I’m going to skip over the first attempt at the blood draw at the pediatrician’s (who agreed, tests should be run) and move to our visit to CHildren’s Hospital after days and days of extra hydration before our second attempt for getting his blood. Deep veins are a problem I do not have, but my sweet little boy does. This makes it even more challenging when trying to assist the techs in holding a child who is sobbing from the pain of the band wrapped around their arm.

They eventually got the blood, and the techs were not enjoying the steps it took to finally get the blood from the rolling, deep veins so I will spare every mother the torment I went through sitting there with my youngest, but I will tell you, I hope to never have to go through that again.

The next day, the results were in the portal, having had blood tests done so frequently I know what is and is not normal for my body I was anxious at the results. A few things were flagged as high but I know that children’s blood work is different so I managed to stave of my panic a little longer before I called the doctor on the 3rd day.

Our pediatrician is great, they hadn’t received the results yet but the nurse logged into the portal, got the results and spoke with the doctor before calling me back. Over all, the kid is in good health, the few numbers that were high, in relation to all the other numbers was not a concern. At some point my little boy had EBV (mono) which is super weird if you ask me but apparently 95% of the world’s population has antibodies for this virus. His vitamin D is low, but that is hereditary and I have the same issue. Knowing that low vitamin D is linked to MS you better believe both my boys take supplements now, also advised by their doctor so I know the actual amount that will help them.

The next step is to set an appointment for him to see a Pediatric Orthopedist. Honestly, I am procrastinating this one because I hate the thought of putting this little human through so much medical testing already, but I know as his mother I will do whatever I can and need to in order for him to feel better.