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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Learning to Love Yourself

Recently I have gotten myself out of a relationship, and have been faced with new obstacles. Loving myself is one of them. If you can’t love yourself how can you truly love another person?

Self care is so important, loving yourself is necessary.

Where does one begin?

Reach out to friends and family for support, and learn to love spending time with yourself. Some people have difficulty with this because they’re left with their own thoughts. It can be a challenge.

I have a mood disorder (BPD/Bipolar) that effects me greatly. I try to occupy myself with music and things I enjoy (like photo editing) and to put makeup on because it makes me feel beautiful. I wear clothes that make me feel good as well.

Again, SELF CARE.

when you take care of yourself you begin to bloom and love yourself more everyday.

It’s a journey but one you are not alone on. [:

To whoever is reading this right now, I hope you find true happiness within. I am hoping to find happiness within me too.

With love,

-Rebecca Elizabeth (A Punk With MS)

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)

Productivity While Being On Disability

So, a lot of people think that being on disability is “easy” and that it must be “great” to stay home all the time. This however, is far from the truth.

What happens when you run out of things to occupy your mind? Depression. Being at home all the time is more of a burden, you become isolated from the outside world. If you asked me what being on disability is like, it’s truly one of the most lonely and boring experiences ever. Not working causes self esteem issues. It makes you feel worthless and like a waste of space.

How does one get past this obstacle?

Try to be as productive as possible.

Lately I have been crafting, looking at a local MS group I want to join, and I’ve been reading. It’s hard some days but something such as cleaning can make you feel a lot more productive. Be sure to get out of the house more often too; I’ve been working on this myself.

My best friend had a wonderful idea. I now have a planner. In that planner I have a “to do” list which makes my life a lot brighter. If you make a list or write what you did the entire day you’ll see how even the smallest thing on your list makes you feel knowing that you did something.

Productivity is crucial. Don’t let your depression and disability win. Keep fighting, and keep moving. It’s not going to be easy, but it will most definitely be worth it.

-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)

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