Booting the Mental Devil

Posted on October 16, 2019 by MSAA

By Scott Cremeans

I went through many years of a deep dark depression that enticed me to see just how close I could get to the edge. This game of chicken between the darkness and the light stole my thirties from me and cannot return the years that were taken. This onslaught occurred as the angel and devil on either shoulder taunted me with a ruthless game of truth or dare. Although this atrocity would not stop, the bold brutal battle did not come to the desired conclusion of the dark side. The following is what helped me, and hopefully, others can Continue reading →

Do You Have Irritability with MS?

Posted on January 31, 2018 by MultipleSclerosis.net

Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.

We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.

Pain

Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.

“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”

Fatigue

No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.

“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”

Isolation and Anxiety and Depression

Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.

“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”

Personality Change

The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.

“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”

Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!

Dealing with Symptoms of Depression: Sports Car to a Jalopy

Posted on July 14, 2017 by MSAA

By Lauren Kovacs

This is kind of a touchy sticky subject for many. Depression is often brushed aside like sugar from a donut. We see it on the table and we brush it onto the floor. It might be out of the way for the moment, but you only moved it.

MS has so many issues. For me, I knew when the MS was changing and I could not deal. I was losing control of my own body. I went from a college athlete and very active to a total mess, after 18 years.

I was very angry. I felt lost. Something snatched my body. Smashing plates helped, but then trying to replace the dishes I broke was too hard.

I started seeing a talk therapist and I talked a lot. Just letting me have diarrhea of the mouth helped me cleanse my soul. Trust me, the mudslide was thick.

After about a year of just surfing the talk therapy wave, I was ready to try a tiny bit of medication. I am not one to turn to medication, but daily crying was too much. I was drowning in a mess and that was 100% not me.

I tried one anti-depressant and the heart palpitations and rage were so bad that I refused to try another. Six more months of daily crying was messing with my hydration. In addition, it took too much effort to apply eye make up only to then cry it off. I agreed to try another, reluctantly. I am very stubborn.

This particular one worked. It was just enough to help me attack the day. Before I take it, I notice I have a very defeated attitude. After I take it, I am back in the game. Put me in coach.

Symptoms of depression are complex, like anything with MS. Anything weird warrants a mention to the doctor. Telling mine was not easy. I did not like telling her about my dish smashing, but I know my “what’s the point?” comment helped her understand.

Medication or therapy may help; they may not. I find MS to be very trial and error. What helps me may not help another, but most MS people will try something new. Any “snake oil,” as my husband calls it, might work a bit.

Be open to telling someone your pain. Be open to maybe trying something. I was locked in a battle with depression that I did not have to fight. Take a deep breath and evaluate.

Try and hold onto the MS wave. Your body may need a bit of help. I now have to wear a life vest in my own pool. Yet one more thing MS took was my ability to swim. I was depressed by this fact. Now, it is a challenge. I attack buoy-training head on.

Depression comes and goes with the ebb and flow of MS. Don’t let it go, if something is getting you down. You might need a life vest. It can be embarrassing to need some help, but it is better than drowning.

MS folks live with constant loss. Loss can be depressing. I went from 60 MPH to about 10 MPH. Going from a flashy sports car to a busted up jalopy is frustrating. Mourning the loss of self is sad. It can be tough to find yourself in the mud-sidle. Keep looking.

Wellness: The Importance of the Mind

Posted on October 30, 2015 by MSAA

By: Meagan Freeman

When I was diagnosed with MS in 2009, I never would have imagined that my greatest challenge would be overcoming my own demotivation and fatigue. My struggle over the past six years has involved many physical challenges, but I have found that my mind can truly pose the greatest threat to my own wellness.

I have never been diagnosed with depression, but I do cope with extreme fatigue, and the symptoms can be very similar. It is often confusing for patients to determine whether they suffer from a psychological, MS related depression, or rather the well-known phenomenon of MS fatigue, known as lassitude.

I have made many lifestyle changes since my diagnosis, including adopting a plant-based diet rich in fruits and vegetables, exercising regularly, and challenging my cognitive skills with writing and academics. According to my most recent blood pressure readings (I also have hypertension,) and my cholesterol panel, I am incredibly healthy from a cardiovascular standpoint. However, the one issue that remains my greatest obstacle is fatigue. As I sit on the couch, my life often swirls around me at the speed of light.

I sit, and my family moves around the house, carrying on with a normal day. Children play, my husband bustles around cleaning, picking up toys. Friends come and go, family members chatter on the phone. Children are getting ready for school, a trip to the park, or horseback riding lessons. All the while, I sit.

It is a feeling like no other, this inability to get up and take part in my life. This experience of being an observer, rather than an active participant. My mind wants desperately to get up, to join in and be there instead of here. My mind urges me, “Get up! You can do it! Let’s go! Don’t miss out!” But my body doesn’t listen. My life feels like a movie at certain moments. It is as if I am sitting in a theater seat, watching images on a screen. The only difference is, the scenes passing by in front of me are my life. Laughing, running, spinning, jumping children fly past me, friends call, invitations are declined. And my internal voices do battle. The mind vs. the body: The epic saga continues.

How do we cope with MS fatigue? Are there any good answers? Often, we ask ourselves whether we are just being lazy, or could we be clinically depressed? The answer is typically, neither! 80% of MS patients suffer from fatigue, and it isn’t your average, everyday exhaustion. It is specific to MS, and incredibly debilitating.

What can we do to manage this fatigue? First and foremost, see your provider. Make sure you aren’t missing a treatable reason for your fatigue, such as a thyroid disorder, sleep apnea, or anemia. Once those causes are ruled out, our options (as always) are quite limited. Physical therapy might be helpful. Sleep regulation is incredibly important, and should be addressed first. Stress reduction and relaxation techniques may be helpful. Avoiding extreme heat is a must, as heat may dramatically worsen fatigue. In addition, several medications are approved for fatigue management with MS.

Most importantly, make sure you are taking care of yourself in all the classic ways. Adequate hydration, nutrition, and rest are essential parts of your daily routine as an MS patient. Avoiding excessive caffeine and alcohol, avoiding smoking, and getting as much activity as possible are all effective ways to manage MS fatigue. Though it may seem counter-intuitive, getting some degree of physical activity can actually increase your energy, even if it is the last thing on Earth you feel like doing. Getting up and off that couch and taking in some sunlight can elevate your mood.

Consider inviting friends to visit you at your home, if you don’t have the strength to go visit them. Being completely honest is essential. Let your friends and family know the degree of your struggle with fatigue, and give them the opportunity to understand. It is important not to isolate and withdraw from friends and family due to fatigue. We often jump to the conclusion that “no one gets it. No one will ever understand.” Maybe they will if you give them a chance. Educating our family and friends about our illness is our responsibility, as patients. We should offer as much advice and information as possible to those in our circle. They will likely be happy to help if they can!

My own fatigue continues to be an ongoing battle, but with my Neurologist’s help, I am learning to manage my symptoms more effectively. I believe the most important thing to remember is that we are not alone. Many of our symptoms are entirely treatable, but we can never hope to see improvement until we reach out and ask for help.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Having MS: Alone For the Holidays

Posted on November 25, 2013 by MSAA

By Gayle Lewis, Ph.D.

It seems inevitable that, come the holiday season, which for some starts not just with an actual acknowledged date of “celebration,” but with the first signs of winter’s cold, it’s not the feelings of cheer and joy and brotherly love that abound, but rather feelings of sadness, loneliness and feeling very much alone and isolated. Why? After all, Thanksgiving, Christmas, Hanukah, New Year’s are times of social gatherings, shared rituals and reminiscences. How come we all can’t just hop on board and feel festive and full of holiday spirit? And how come someone who has MS might just be feeling those aforementioned lows more deeply and profoundly than someone who is not struggling with MS’s chronicity?

Multiple sclerosis, whether it’s the more invisible kind or the more obvious symptomatic, renders the sufferer to feel “different” ALL THE TIME. And not necessarily different in the “I am special” way. “Different” in this case often means, “I don’t belong,” “I don’t fit,” “No one gets me or understands me.” And holidays, being a time for gatherings, friends and family, when you already feel like you don’t belong, it can feel more intensely uncomfortable being a joiner because it’s what is expected during holiday season. In addition, the common Norman Rockwell–like characterization of the holidays can seem unreal to people whose families don’t fit the traditional-nuclear-family mold due to circumstances beyond their control, and having MS can exacerbate some of the complications there already in trying to fit into the mold.

It’s been my experience that many family members of people diagnosed with MS have not made an effort to understand their family member’s disease due to fear, disinterest, or distance that existed even prior to the time of diagnosis, and/or the patient actively deciding NOT to tell that he/she has MS. In the latter situation (which happens quite often), whatever holiday loneliness or feeling as if they do not fit, it is due to active participation of the patient with MS. To be sure, I am not blaming the patient for not sharing about their disease. There are often family histories and dynamics that inform that decision…and inform ANYONE’s feelings about the holidays, whether joyful or lonely. But MS IS a lonely disease, even if you tell someone about it, because most patients, at least the ones with whom I work, feel like no one gets it. And how could someone with MS not feel especially alone during the holidays at a time when you already feel like you don’t belong, as per usual anyway?

*Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU’s Langone Medical Center, and Staff Psychologist at Juilliard’s Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the EDCAS program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com

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