Tag Archives: Multiple Sclerosis

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)

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The Void. Update.

It’s been a while since I have posted here.

Lately I’ve been struggling with loud thoughts, feelings of severe emptiness, and feelings of extreme love and attachment. All which are BPD symptoms. I always feel empty on some sort of level.

I’ve been out of a long-term relationship since late December last year. I was thoroughly convinced my partner had pure intentions until I got screamed at daily. I was also shoved. Than? I chose to leave him for good. The abuse was escalating and I didn’t want to be there when it escalated more. I stayed there almost a month until I found housing, I listened to his abusive words, screaming, and evil rants daily.

I could cry to him about my feelings and he would usually blankly stare at me like he didn’t care. He also liked to use my mental illness against me whenever I was upset and even guilted me when I wanted to spend more time with my family. I didn’t know what reality was from all the mental abuse, he gaslighted me often. No matter what I did, or how many things I did for him, I was never able to please him enough. I felt like I was just crazy. I got the help I needed a year into our relationship when my mental health wasn’t up to par and he refused to get professional therapy when I brought it up for him. A psychiatrist is good, but with unhealthy behaviors talking this out with someone is beneficial. I told him this.

I didn’t understand. If I got the help I needed for us, why wouldn’t he do the same? On my way out the door, he THAN said he would go to therapy, but the damage had already been done. It was too late. I will always look fondly on the good parts of him that did exist. I’m not saying he never cared about me ever because he did at times.

Losing him was the beginning of all that I knew of my identity being ripped away from me.

I wanted to believe he was the love of my life. Oh boy, was I wrong. I idolized him for so long that it took forever before I saw him as a negative factor in my life.

This is the first downfall my BPD has had in my recent mental decline.

Second Downfall:

My ex-best friend whom I blocked on social media, messaged me the other day on her craft Instagram page. She was telling me how much of a shitty person I am when I told her straight up when I was going to hang out with one of our ex-lovers. I was honest and didn’t hide my feelings. We both had feelings for him and dated him before we knew each other.  That was the right thing to do. Lying is not me. She thought her claws dug deep into me when she told me that my recent ex hit her up. I mean, I’ve found an amazing guy who was someone I had previously dated in college. He’s good to me. He appreciates me. He is genuine. Our relationship is always being built in a constructive and loving manner.

Plus, if she likes being called crazy and gaslighted constantly, my ex is perfect for her.

What dug deep was her saying that I did things behind her back. I almost screenshotted and sent our old convo to call her bluff, but I let it go.  I did see her as a best friend, to this day she would say this isn’t true. It was. I had hoped that she would understand my feelings but she didn’t.

I mean, she’s back with that ex-lover we argued over who mutually wanted to see me at one point. They’ve been on and off for years anyway. No hard feelings on this end. I’m happy that they are happy. It hurts that she despises me this much, but that’s her issue at this point.

 

If you both are reading this finding humor out of it, I pity you for finding humor in someone else’s pain and wish you both the best in life.

Third Downfall:

My boyfriend died and got resuscitated last month, it was terrifying seeing him on life support. I stood by his side and looked after him the week after this incident. He is lucky to be alive. The doctors thought he wouldn’t survive, but sometimes I think about it and feel like I’m going to almost lose him again. It physically hurts to think about it, I literally get scared. Thank God I have a therapy appointment next month. I haven’t brought the incident up in detail to anyone in a long time. It was too difficult to re-live. It’s not an easy thing for anyone to witness. It’s all I could picture for weeks.

Fourth downfall:

I had a best friend who recently passed away from a heroin overdose. His wife who is also my friend found him in his apartment. They think he OD’d on purpose given the amount that was left there. I never have done the stuff, never want to either.

The day before the funeral:

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I separated from him when he was too unhealthy for my mental health three years ago. The last time I saw him was last year. We were inseperaable for a long time before our falling out. I have a lot of guilt. I went to his funeral yesterday, it was one of the most difficult days of my life. He was an amazing person who fought his demons until he couldn’t anymore. His mental and physical issues caused a lot of pain for him, so if anything I remind myself that he’s at peace. To be honest, I don’t blame him for how he felt. He had physical health issues on top of mental health issues. It’s bad enough having a body that won’t listen but a mind that torments you on top of that? It’s a dangerous cocktail. I’ve made it this far somehow, I’m doing my best to keep moving forward.

 

I’ve been able to picture his face and voice clear as day the past week. This loss has been traumatic for me to say the least. I can literally just hear his voice randomly. I got to cry with his wife and mom yesterday which helped a lot.

 

Fifth Downfall:

I’m on a new MS medication called Ocrevus. My MS is a huge trigger for me because I witnessed my mom struggle with her MS for years. She also has been on infusions. Steroid infusions are my biggest memory. I watched her get steroid infusions with an at home nurse my whole life off and on. When a trigger is your own body it increases symptoms. You can’t escape yourself. The side effects make me feel like shit. I’m tired all the time too. I finished the second half my first dose last week.

I feel abandonment by my recent past relationship, I feel abandoned that my best friend died and left me (logically I know it wasn’t meant to hurt anyone), I feel abandoned by my ex-best friend, who sees me as a monster. I feel like one half the time anyway. Ha.

When I’m alone I feel undescribably empty. I feel such intense sadness lately that I feel like my existence is worthless. I get random spurts of euphoria which is how my mania has been. Either I want to die or feel the best I have in years. I wish I didn’t have such black and white thinking.  I can’t wait to feel emotionally close to everyone around me again. I usually mask that empty feeling with a shit ton of weed or sleep. Sometimes both. I drink also but try not to that much due to it becoming an issue in my past. The pain can feel so intense.

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Well, that’s all I’m writing here… for now.

Feel free to comment, I love hearing from you all.

 

Have you struggled with chronic emptiness with your BPD? If so how did you deal with it? How do you deal with your intense emotions?

Feel free to share ways that help. It could help someone who reads this too.

 

Xoxo

-Rebecca Elizabeth ( A Punk With MS)

 

Medical Cannabis: My Journey

I have been smoking marijuana since I was 15 years old.  Never in a million years did I ever think that I would use it medicinally. I simply enjoyed getting high and forgetting about my days. As a teenager I was rebellious, carefree, and thought I knew the world like the back of my hand (as most teenagers do). I would sneak out, indulge in public drinking, and go for burn rides with friends.

Now, let’s fast forward to two years ago. The exact date was February 4th, 2015.  It was one of the rudest awakenings that I ever got in my entire life. I was going through numerous medical tests for months. The issue I faced originally was numbness/weakness on the right side of my body. I also had consistent vision changes/dizziness. After the tests it was confirmed by my neurologist that I had a diagnosis of Multiple Sclerosis. This honestly wasn’t a surprise because my mother and deceased uncle both have/had  Multiple Sclerosis. (My neurologist is also my mother’s neurologist). I cried. Hearing this news was definitely difficult. I couldn’t cope with my life for a VERY long time. 

I have witnessed my mother struggle with this terrible disease my whole life. I also have witnessed my uncle struggle in a wheelchair around the time that he died. Those memories are still engraved in my mind to this very day.

For those who don’t know, Multiple Sclerosis is when your own immune system attacks your body (the brain and spinal cord). This causes lesions and a lot of muscle spasms and nerve pain. I have weakness in my right side, numbness, tingling, nerve pain, migraines, muscle spasms, and restless legs. 

My first MS medication was Rebif. This was an injection I took three times weekly. The side effects were brutal. I felt like I had the flu EVERY SINGLE DAY. The only thing that eased the body aches and pains was marijuana. Ibuprofen and muscle relaxers only helped so much. 

This chapter in my life is what began my use with medicinal marijuana. I didn’t use it to get high, I used it to find relief.

 I also suffer from PTSD. Marijuana helps lessens my flashbacks.

 You could say that marijuana not only helps me physically but helps me mentally and spiritually too. It makes my body and mind feel “normal” when I used to spend years feeling nothing but aches and pains. 

I’m on an oral pill called Tecfidera for my MS currently. It causes gastro issues and a lot of flushing. Because of Tecfidera I am now two months in remission. I still fight MS symptoms daily. I also use marijuana daily and do not plan to stop anytime soon. Medicated edibles, CBD oil, cannabis oil, smoking, and vaping are all great ways to get relief.

It gave me my life back. Thank you for reading.

-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)

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

 

 

 

Marijuana and the Stigma that Surrounds it

Okay, so we hear all kinds of things about marijuana in our everyday lives (especially lately with legalization across the nation). Parents across the USA fear for their teens and fear  the possibility of their younger children somehow getting a hold of the plant.  Major media outlets such as CBS news have gotten on the reefer madness hysteria bandwagon  about a rare syndrome that has been around since the beginning of time for marijuana users. The syndrome is easily halted by stopping marijuana use and even taking a hot shower.  All that this type of media exposure is doing is putting nothing but fear into people about marijuana’s legalization movement when the plant itself helps people more than harms them. I can’t think of any situation where marijuana is harmful to someone.  The DEA even recently put CBD on the same list as other Schedule 1 drugs (which includes heroin and marijuana) CBD is from the marijuana plant but does not get you high, it relieves pain. Will the federal government ever accept the fact that a plant from the earth isn’t as harmful as alcohol or opiates?

There may still be a war against the federal legalization of marijuana but many people agree on one thing; other parts of the world have legalized it and now it’s time that the U.S.A. followed.

For an example, I’m a 25 almost 26 year old woman with Multiple Sclerosis.If you have no idea what Multiple Sclerosis is, click here. Marijuana doesn’t just help my muscle spasms and nerve pain, it has also stopped a lot of my P.T.S.D. symptoms.  It slows down my racing thoughts and  gives me a chance to think before acting irrationally.  This miracle plant has gotten me off muscle relaxants and has given me a chance at a better life.

I live in the state of Maine and I am blessed to have a medical marijuana card, but our Governor Paul Lepage is determined to try his best to halt recreational use another year against the will of Maine voters. This means if it doesn’t get legalized recreationally, i’ll have to pay a lot of money to renew my medical marijuana card this year and pay more for something at the dispensary that I could otherwise legally grow myself for less cost.

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Marijuana doesn’t only help with MS, it helps with many symptoms of Parkinson’s Disease,  Cancer, Lupus, Lyme Disease, and everyday chronic pain. There are many other conditions it helps, but to list them all would take a century.

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If you know anyone who is misinformed on the benefits of marijuana, step up and speak out. This is a way that you can inform them (or even possibly change their mind on the topic).  With a lot of hope and advocating as much as possible on the topic, we can get one more step towards legalization.

-Rebecca Elizabeth A Punk with MS