Tag Archives: multiplesclerosis

Life Update

So, I’ve been quite absent in my blog posts. Life has been pretty crazy and I’ve been trying to get myself situated. My Ocrevus (MS Med) is actually working. I’m still in remission!

After a best friend breakup I moved back home and have been saving money for a new place. I’ve came to realize that in the worst of times family is always there for you. I don’t take that for granted because some people don’t have a support system. This is why I have became a support system for many people around the world on the internet.

I have been crafting a ton lately. I recently crocheted myself a beautiful purple shawl. It helps keep the mind occupied and is quite fun too. I found some stamps at a local thrift store and my mother found a loom for me to knit on. I’ve made one hat on it so far.

One other thing I’ve been up to is penpaling. I find that the old fashioned “snail mail ” is more personal and you can get to know someone through physical writing. It’s a new hobby but I enjoy collecting stickers and all kinds of fun things to send them! I recommend this hobby to anyone. They have Facebook pen pal groups you can join (this is what started my penpal journey in the first place) a lot of the people are super welcoming. I’m in multiple groups!

Hobbies always help me through tough times. I bet it would for you too! What are your hobbies? I’m sorry this blog post isn’t super lengthy. I hope you all have been doing well, I will let you all go for now but I’ll do my best to write more soon. ūüíď

-Rebecca Elizabeth (A Punk With MS)

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Fighting Fatigue?

Fatigue is a symptom of MS. The fatigue a lot of us deal with is usually chronic. It doesnt simply go away. But how do you manage such a symptom? How does one accomplish things on a normal level being tired all the time?

The answer? You can’t 100 percent. You can exercise more, eat better, get the rest your body needs but you’ll still probably remain tired on some sort of level. I’m not saying everyone with MS will be fatigued forever because there are people who are just fine in that department. If you’re one of those people than that’s awesome because fatigue is serious symptom that effects quality of life.

My advice? Take short naps if you can, and make sure your stress levels are as low as possible. This will help you manage your fatigue easier.

Keep your sleep schedule consistent so you know how often you are getting tired throughout the day. Be sure to discuss your concerns with your neuro or primary care provider.

If you dont want to sleep, find a task you enjoy and zone out doing it for a while!

I hope these suggestions help, and I hope you can get your fatigue to a minimum! Don’t give up!

-Rebecca Elizabeth (A Punk With MS)

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)

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)

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)