Tag Archives: community

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)

 

 

 

 

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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)

 

 

 

 

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)

The Old Me, A Memoir

I miss the days where I didn’t have to pay attention to what I ate, or how hard I pushed myself.

I miss the times where I bathed in the sun with not a care in the world. Nowadays when I’m in the heat too long, I overheat and feel ill.

I miss not having so many doctor’s appointments and having a completely open schedule to do as I please during the days I didn’t have to work.

I miss working a lot.

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I miss the days when my body would not attack itself, the days without dealing with one migraine after another, and the days without having to take so many pills.

Today I say goodbye to the old me, and focus on today the best that I can. I will forever miss the old me, but a part of her will always remain. You can say goodbye to the old you too, it doesn’t mean that you have to completely forget her/him. Take care of yourself and try to accept your current situation  (as tough as it may be.) Dwelling on who you used to be all the time can reopen old wounds and cause you even more unnecessary pain. You can do it, I believe in you.

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– Rebecca Elizabeth (A Punk With MS)

To The Ones Who Never Feel Good Enough

This post is dedicated to the ones who always feel like they have to hold the weight of the world on their shoulders.

You are an incredible human being that puts light into the world wherever you go.

You are a shining soul, that helps others when they feel like they have fallen into an infinite darkness.

You have held others together, even when you didn’t feel put together yourself.

You are the selflessness that a lot of the world lacks.

You are truly more wonderful than you’ll ever see or know.

I can say this because I am also one of these people.

I wonder if one day  I’ll ever feel “good enough” even though I know I’m a good person.

There are days when you’ll want to give up or even feel weak, but you need to keep moving.

You need to remain strong, you’ve made it this far. Rest and recharge if you need to. You are only one person. One person can make a difference, but in order to care for others, you need to care for yourself.

The world needs your kindness, don’t let it make you dark.

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– Rebecca Elizabeth A Punk With MS

 

 

 

 

One Lovely Blog Nomination

I have been nominated for the ‘one lovely blog award’ by my friend Hannah! Check out her blog at https://baldblogging.wordpress.com/one-lovely-blog

Rules

  • Thank the person that nominated you and leave a link to their blog
  • Post about the award
  • Share seven facts about yourself
  • Nominate at most 15 people
  • Tell your nominees the good news

Seven facts about me

  1. I have a pet Colombian Dwarf hamster named “Spoopy” We got her on Halloween!
  2. I love makeup and hope to be better at applying it in the future
  3. I love creepy and weird things that most people would find too odd for them to enjoy
  4. I have an obsession with the anime “Sword Art Online” currently
  5. My favorite band is Good Charlotte (Since age 11). I met them in November last year
  6. I have a lot of tattoos, I can’t give you an exact number but I love every one of them
  7. I enjoy chai tea, it’s my favorite kind other than jasmine pearl green tea

https://dinosaursdonkeysandms.com/  https://rumpydog.com/ https://embracingauthenticityblog.wordpress.com/ https://theoilyguru.org/ spoonserendipity.blogspot.com stonedmsunicorn.blogspot.com https://brainlesionandme.com/  http://www.veryanxiousmommy.com/ https://musettemary.wordpress.com/ https://artistbybeauty.blog/ https://zebrawitch.com/ http://www.unlockedpain.com/blog/  https://hchom.com/ https://healthynappynerdymommy.com/ http://www.asocalmom.com/ are my nominees! ❤ I love all of your blogs so much!

-Rebecca Elizabeth  A Punk With MS

Multiple Sclerosis; Coping With Challenges

Multiple Sclerosis (MS) is a chronic illness that causes your body to attack its own central nervous system. This leads to myelin damage and misfiring of the nerves. Myelin is the layer that covers and protects the nerves. During relapses (or attacks)  Your body attacks the myelin in the brain, optic nerves, and even the spinal cord. These attacks cause numbness, tingling, weakness, fatigue, nerve pain, and even possibly the loss of mobility later in life. (this is for some MS patients not all.) Permanent damage can cause a lot of obstacles for patients who are trying to live as normal as possible.

The list of Multiple Sclerosis symptoms are long, but being able to cope with the everyday changes, challenges, and obstacles is one of the most important things.

 

1. Find A Support System In The MS Community

The MS community is one that is widespread and always readily available. Before the wonderful world of the internet, patients had to read up information from the small number of books locally available and got any other information on the disease directly from their neurologists. There wasn’t as much research done on MS back then, and it was hard to find others who understood the disease. This lead to more patients feeling alone, isolated, and extremely depressed.

Nowadays at the click of a button, you can find friends who also have MS and even endless topics about the disease. The world is at your fingertips (literally) so go out there, make some friends, and educate yourself as much as you possibly can. Being a part of the community will make your hardships and challenges much easier because you can relate to others who understand.  I use M.S. Connect and MS Pals on Facebook. These are great groups for support.

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2. Know It Isn’t The End

You may be newly diagnosed or may have been dealing with this disease for years. Regardless of the situation, days get tough and yes it can be very frightening. Remind yourself that the medical field is advancing daily. For example; scientists just found out that our blood molecules can possibly define what type of MS we have and what treatments will help us.  This is a huge breakthrough in MS research. We haven’t found a cure yet, but we can’t give up hope.

 

3. Pick Up A Hobby

Hobbies are a great way to pass the time, especially for those who are on disability. If you do happen to work still, a new activity or hobby could help lessen your depression. For me personally, I write, I draw, I even play guitar sometimes. When I don’t have the energy for that, I read or I watch my favorite T.V. show. The distraction helps me get through my harder days, and being productive in writing makes me feel like I am doing something that benefits others since I no longer work. You can find something that will help you too. Check out Creative MS Expressions, a community on Facebook where others with MS share their art and creativity. Mary Pettigrew (The founder of MS Pals) Runs this group and is a huge MS advocate in the community.

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4. Get Involved

If you feel like you want to help make a difference or just need to get out of the house, The Multiple Sclerosis Society has many different events where you can meet others and fundraise for the fight against Multiple Sclerosis. If you want to see when an event is happening near you, be sure to click the link! There are also other opportunities they offer that include advocating and volunteering.

5. Take Care Of Your Body

Having MS means being aware of what you put into your body, and making sure you exercise. This will make you stronger over time and can help combat fatigue. Healthy eating (such as reducing inflammatory foods) and taking vitamins are some simple yet very effective ways that can help you through this MS journey.

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I hope that this article helps you overcome your current MS challenges and obstacles. Remember that you are not alone and that there are many people who are here standing/sitting right beside you throughout this battle.

-Rebecca Elizabeth A Punk With MS