All posts by apunkwithms

Blogger, MSer, Mainer, Freethinker.

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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MS; Fight or Flight?

When something traumatic happens, every human being in existence has a fight or flight response. To learn more about the psychological definition you can click here

This could be for extreme circumstances but in this instance, I’m talking about MS. In regards to my own MS, the personal response I have is to fight. To run away could mean deterioration of my health and my well being.  Not everyone has this particular response which brings me to an extreme sadness to think about. I wish there was a way to reach out to every single person who is in that emotional position. MS is not the end of the world. I learned this from my mother, who has had an MS diagnosis since I was 5 years old. Not being raised with that mindset could have made me a completely different person, and for that I am grateful. I was exposed to the reality of it. My mother didn’t ever “hide” it from me. Some parents may not agree with this type of parenting but for me, it saved my life and my future.

If you feel like running from your diagnosis it could mean that your future will be that much tougher. Take care of yourself, know that the treatments that are available will improve your quality of life. I know doctors appointments are a pain (we have so many!) but the end result will be worth it, I promise.

With Love,

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Rebecca Elizabeth (A Punk With MS)

 

 

 

 

MS and Mental Health: An Unspoken Bridge

There’s a common misconception that Mental Health effects just the brain, not other parts of the body. Did you know that Multiple Sclerosis can be aggravated by mental health issues?

How does this happen? Stress. 

Stress causes an inflammatory response in MS patients and should always be taken seriously. When someone is having a mental health episode their body immediately is heightened with stress whether they have anxiety, depression, PTSD, or any other diagnosis. This can cause flare-ups and even possibly an MS relapse.

What can we do to help ourselves stay on track? When someone with MS is being treated with medication for a mental health diagnosis it’s important to have open communication between their psychiatrist and neurologist. Steroids and MS meds can throw off someone’s emotional state of mind so it’s good to be monitored by both healthcare providers especially if they are on a new MS medication. This will reassure the patient that their body and their mind are both being taken care of properly.

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A lot of healthcare providers are simply unaware that this is such a struggle for many of us. The way I’ve worded it to my psychiatrist is that when my body is in distress it stresses out my mind, and when my mind is in distress it stresses out my body. It’s an endless cycle that can be definitely frustrating. It makes our bodies ache, and can make it difficult for us to go through our day to day routines.

The battle between the body and the mind is a long and tough battle but knowing what to be aware of is always a way to keep yourself safe. Please be sure to reach out to someone if you are ever struggling.

-Becca Elizabeth (A Punk With MS)

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)

 

 

 

 

Hope.

Multiple Sclerosis is terrifying. It’s lack of control. You may wonder how to gain control of your life back. The first step is taking a deep breath and realizing that no matter how rough things get you still have a purpose in life. The depression from this struggle can be at an all-time high sometimes. Don’t let it beat you. Don’t let it win.

Be brave for your children and your significant other. If you have neither than be brave for your pets! In all honesty, the most important person that you need to be brave for is yourself. You can overcome this and you can get through this. Focus on a new project, enjoy the summer breeze, look around you and remind yourself of the beauties of being alive.

Our bodies are attacking itself but that doesn’t mean that we need to stop living. Realize your limits and reach for the stars. Don’t think that you aren’t capable of something great.

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Here’s a task. Every day I want you to find something beautiful around you. Look at it. Indulge in it. Allow it to turn your vision into something less dark. You can do this.

 

With Love,

-Rebecca Elizabeth ( A Punk With MS)

The Long Road

I haven’t updated this blog in a while. Life has been pretty hectic (between mental health/physical health appointments, personal issues, and personal obligations it’s been quite overbearing.) My mental health issues have also flared up, and it’s been a huge struggle. Alas, I have a wonderful online community here and wanted to give my appreciation to all of you, because you have helped me as much as I’ve helped you. We are all a team of wonderful human beings going through similar things. I will be mindful of updating this blog more, because I do not want to throw all of the work I’ve put into this blog away. I am only human of course, and have been lacking the motivation to write, but I plan to use this as an outlet again as soon as possible. If there are any topics you would like to see me write about, feel free to email me at apunkwithms@gmail.com. Thank you all for being so supportive and for following me.

With love always,

-Rebecca Elizabeth  (A Punk With MS)

Forgiving and Letting Go Of The Past?

You’re sitting in a chair relaxing on your front porch watching the sunset when suddenly a feeling of sadness arises. It causes you to feel guilty, useless, and empty. Why are you so sad when you are looking at something so beautiful? The answer? Your mind. Memories.

Why are thoughts so powerful? They can make us laugh, make us cry, and put us in the most positive mental space or negative mental space we’ve ever been in.

There sadly isn’t an easy answer. 

Numerous studies are done on human psychology all over the world, and we aren’t even halfway to learning about the human brain. There is so much information we have yet to find.

My point is, the past can be difficult sometimes. Traumatic events re-wire your brain in a way it wasn’t wired before. 

A lot of damage is done after so many events which can make it difficult to recover after a mental breakdown. 

Letting go is hard. So is forgiving. 

For you I have five words: One day at a time.

-Rebecca Elizabeth (A Punk With MS)