Tag Archives: Autoimmune disorder

Personal Update

So, life has been a lot better since my last MS Ocrevus dose. I had severe fatigue for weeks afterwards but now I just have my everyday normal fatigue. I can function on a bit more of a reasonable level and even though I’m tired most of the time I find coffee and stimulating activities (Youtube, Netflix, Gaming, Hulu) to be quite helpful. I hate napping nowadays so that’s something I tend to try and avoid it if possible.

I have a roomate/best friend that is into a lot of great shows. We recently binged MTV’s “Catfish” together which always makes me laugh. I’m unsure if it’s faked part of the time because I wonder how in the world they find these individuals. Regardless, it’s entertaining.

Recently I’ve been reading a book called “My Sister The Serial Killer” by Oyinkan Braithwaite. The plot involves a woman who has a sister that kills her boyfriends. She works at a healthcare facility and knows how to clean up after her kills. I usually read non-fiction but this book is a good change.

My MS seems to be currently stabilized which is exciting, my next MRI will hopefully go well with no new lesions. I’m blessed everyday I wake up and don’t take good days for granted. Every day is a new beginning filled with endless obstacles and possibilities. Some days are more painful than others but at the end of the day I’m glad to be who I am. You should be glad to be the person that you are too.

-Rebecca Elizabeth (A Punk With MS)

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Season Changes.

MS and the heat have been quite the unfriendly combo to my body. When the humidity gets high I usually hermit out in the comfort of my air-conditioned living room. Fall being soon is quite the relief to me (as it is probably to some of my fellow msers too)

 

For those who don’t know, people with MS are usually hot/cold sensitive and lack temperature regulation in their bodies. If a room is too hot or too cold be sure to let your MS friend know so they won’t overheat or freeze. For me personally I really can’t tell when a room is too hot/cold or if it’s just me. I even have difficulty when it comes to shower temperature. I have to emphasize: not everyone with MS has this symptom but a lot of us do.

Between Therapy, self care, and doing my best not to go completely insane I’ve had my hands full.

Despite of our hardships with weather; I decided to make a list of the little things that are enjoyable especially during a day when the temperature is too extreme for you to go anywhere.

Netflix/YouTube (I’m huge on Rhett and Link lately. I also have a huge documentary kick going on)

Coffee. Nectar of the gods.

Watching the leaves turn color (I live in beautiful New England so this is highly enjoyable)

Sitting on the couch while listening to an audiobook

Craft. Make jewelry, crochet, or pick up a different hands-on activity.

Take a nap. Who doesn’t love naps?

Have a horror movie marathon with snacks.

Write poetry or draw something you’ve been thinking about a lot.

Start a journal.

Bake homemade bread or pastries.

I hope these ideas help. Please be sure to rest and take care of yourselves especially through the upcoming weather changes. Your body will ache and maybe go haywire for a bit but everything will be okay ❤ When winter strikes be sure to come back and read this list. Staying inside to to avoid hot/cold sensitivity is the absolute worst. It can get really boring.

-Rebecca Elizabeth (A Punk With MS)