Tag Archives: 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)

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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 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)

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)

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