Physical and Mental Wellness

By Lauren Kovacs

Ok fine!

I admit that denial of MS and its friends mental and physical stress is a battle. They go together and share equal importance. One affects the other. I had unknowingly adopted both.

Years of mental struggle and talk-therapy led me to medication eventually. I am not one to rely on pills. I try several options, before I let pills win. Anti-depressants are, for me, a must now.

I take a teeny-tiny dose, but it helps. It gets Continue reading

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Sometimes Living with Multiple Sclerosis Can Get Overwhelming

By Penelope Conway

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis.

Many people don’t like talking about how much a person’s life changes with an MS diagnosis or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Sure, someone living with a mild case of MS or who has a stable progression may think I’m crazy to even bring the topic up, but just because people aren’t talking about it or are choosing to hide their struggle, doesn’t mean it’s not real.

The reason depression happens is because our symptoms continually progress (meaning they keep getting worse), making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day, and as time passes they only worsen.

Personally, I have experienced changes to my body and feel them with such intensity that it’s hard to even put my disease progression into words. I can actually feel the numbness, pain and difficulties creeping up my legs, arms and my entire body as the day goes on. One day it was just my big toe that I couldn’t feel and the next it was my entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up, chaotic emotions. All I ever wanted was to fit in and have that carefree life that MS stole from me. Is it any wonder that depression happens? I mean, who wouldn’t get depressed knowing that their body was destructing from the inside, out?

There are times when it’s easy to face the challenges in a day, but sometimes it’s a battle between sanity and trying to hold on to hope for a better tomorrow. It’s when hope begins to fade and all that’s left is pain and confusion, that’s when the tears start to flow and depression rears it’s ugly head.

You may see me smiling, hear my laughter and admire my strength, but in actuality those things are covering the pain that doesn’t often get talked about…both emotional and physical pain. My smiles are real, but so are my tears. I have found that if I allow myself time to cry, the weight of everything I carry gets lighter. It’s much like a pressure reliever. I cry, vent, then take a deep breath, dry my tears and face the day. Just that little bit helps.

I also take an anti-depressant because I found myself crying all the time, even when there was nothing to cry about. I would cry over the silliest things too like forgetting a word or dropping a cup of water. Yes, me, the positive one.

I needed help and reached out to get my whacked out emotions under control. MS doesn’t differentiate between which nerves it’s going to mess with so when the nerves that help us manage our emotions short circuit, know that it’s just another part of a living with MS and that there is help out there. You don’t have to go through it alone.

If you are having a wonderful day, please don’t criticize someone that isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to those around you for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to make an appointment with your doctor to talk about what’s going on.

Life may not have turned out the way you expected, but you have a story to share that can help  people cope with the unplanned and unexpected. Talk about what’s going on with others. It’s time to let go of holding on so tightly to a life that once was and start living the life you have now, today. Take things one day at a time, and if needed one minute at a time.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Finding Myself In A Funk: Staving off Depression Due to MS Disease Progression

By Stacie Prada

Each time a symptom worsens, it can trigger fear, grief, and depression: fear for the unknown future, grief for losing some physical or cognitive ability, and depression for the sadness of the whole life with multiple sclerosis experience.

Lately, spasticity in my arms and legs is increasing. Spasticity results when the central nervous system sends messages to parts of the body involuntarily causing them to tense. It’s causing me physical pain and affecting my coordination. I’ve tackled spasticity head on by talking to my neurologist, starting medication, stretching, exercising, and getting referrals for physical and massage therapies.  It’s a bit overwhelming since I have enough in my life consuming my time already.  But beyond this common MS symptom is the emotional distress triggered when I think about what will likely come as my disease progresses. My mood is flirting with depression, and that worries me.

It helps me to know that our moods will always ebb and flow between the highs of joy and lows of depression. It’s impossible to experience life joys and hardships without a changing mood.  For me the goal is not to avoid sadness, it’s to recognize when I’m headed for depression and use those low feelings to motivate me.  I hope to redirect my behavior and thoughts to something personally productive.

Being diligent about watching for potential depression, validating feelings, taking action, and assessing the experience after each episode helps me deal with the cycles of adjustment and depression that come with having a chronic and progressively debilitating illness.

Be diligent about watching for potential depression. The goal is to anticipate when I might be susceptible and recognize the subtle signs before it’s more difficult to course correct. Some ways I’ll recognize I’m at risk for depression are the following:

  • If something in my life is causing increased stress or symptoms are worsening, I’ll ask myself how I feel about it. Does it feel manageable? Does it scare me? I need to pay close attention to how I’m dealing with stressful situations and be on the lookout for depression.
  • Friends and neighbors check in on me when my routine is unusual, and I try to be someone who checks in on others. It’s critical to let them know I appreciate it when they check in, otherwise they may feel discouraged from doing so.
  • I try to notice if I’m declining activities I enjoy because they seem like too much effort. Given that fatigue can contribute to this, it’s good to be honest about the reason for the decision. We don’t do ourselves any favors with self-deception.  We just delay helping ourselves out of a difficult situation and potentially increase our suffering.
  • Trust and encourage people close to me to let me know if they think something is off with me.

Validate feelings.  Remember our physical and emotional health are inextricably entwined.  Recognize that it’s normal to feel depressed when our health is declining. It’s not a character flaw or personal failing to experience feelings of depression. Give yourself credit for doing as well as you’re doing.  Consider that you have a lot of skills that keep you living well with your condition and that needing more help is reasonable and going to happen periodically.  Remind yourself that you don’t have to feel terrible and these feelings don’t need to last forever. There are actions we can take that can help.

Take action. I’ve found that if I can take just one little step to offset my low mood, it can put me on a path toward feeling optimistic and empowered again.  Intentionally make the first step small.  Success is what’s needed at this point to encourage taking the next small step that will hopefully lead to more.

  • Do things that naturally help your body release mood-boosting endorphins. Use the mind-body connection to your advantage by listening to music you love, dancing, stretching, and moving your body. Triggering your body to release endorphins won’t solve your problems, but it will make you feel better temporarily and sometimes that’s the best we can do in that moment.
  • Power through: Pushing yourself to ignore feelings of depression can help in a moment, but recognizing depression and addressing it directly is necessary for long-term wellness.
  • Pursue connection: Talk to someone. Your neurologist, counselor, confidants, and online groups closed to people with MS can be a good sounding board. They can help validate your experience and help you find your way through these feelings.
  • Contribute: Whether it’s through work, volunteering, mentoring, or even casual encounters throughout the day, find ways to contribute to society. Knowing that your value is more than your physical abilities is crucial for adapting each time your body deteriorates. Having purpose and giving to others helps develop this sense of self-worth. There are ways to accommodate disability to continue being able to contribute even if it looks different as our disease progresses.
  • Seek personal growth: Learn something new, create something, or seek opportunities to see things differently than you have in the past. A change in perspective can neutralize feelings of depression dramatically.
  • Consider supplements and medications: Talk to your doctor about treatments available to you. They can be used temporarily to offset depression that has surpassed the point of being able to tackle without medication. Medication may also be helpful for ongoing maintenance if needed long-term.

Assess the experience. Think about what triggered feelings of depression and what helped you to feel good again so that you might be more prepared for next time. Think of it as weaving a personal safety net that includes your posse of friends, family, and health care providers along with lessons you’ve learned from past challenges. Remembering your previous successes will help you be your own inspiration when you need guidance in the future.

The time between when I start exhibiting tendencies toward depression and when I recognize it may not be as fast as I’d like, but with practice and self-awareness I keep getting faster. Improving my response time reduces periods of distress and helps me build confidence in my ability to face my future with MS. I’m still in the midst of applying these lessons to my current situation, but I think I’ve reached a turning point. I have faith in my safety net, and I know that I’ll adapt. I also believe that thriving in life doesn’t depend on life being easy; instead I think facing challenges head on with grace is what thriving looks like.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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The Motivator: Winter/Spring 2017

Introducing MSAA’s newest edition of The Motivator, available now in both printed and digital versions!

Read about the following topics in the new Winter/Spring 2017 issue of The Motivator:

  • Cover Story:
    Disease Effects and Needs of Minority Populations with MS
    New findings on diagnosis, symptoms, disease course, treatment response, and access to care are among the many issues presented in this article.
  • Up Front:
    MSAA’s President and CEO Gina Ross Murdoch talks about new Board members, successful fundraisers, and exciting initiatives.
  • Research News:
    Details are given on Ocrevus™ (ocrelizumab), the first disease-modifying therapy to be approved for both relapsing forms of MS as well as primary-progressive MS.
  • Program Notes:
    MSAA’s MRI Access Fund is now fully restored and in full swing, providing much-needed MRI scans to individuals who otherwise could not afford this vital testing.
  • Stories to Inspire:
    Read about an individual’s recovery from severe depression and her newfound happiness.

Don’t Forget!
The new Winter/Spring 2017 issue of The Motivator is also available as a digital edition, providing: easy, interactive, online viewing; access from your desktop, tablet, or mobile device; and special features that include a search field, font-size preferences, and more!

*The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters.

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Do You Live Life in an MS “Bubble”?

We recently shared an article with our MS community about living life in an MS ‘Bubble’.  So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle.  Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed.  People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare.  No appointments, tell hubby having a recharge day, not doing anything.  Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me.  I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now.  I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep.  It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right!  People just don’t get how hard it is to do the simplest things.  Like shower, get dressed, and go out.  The first to get done.  Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it!  Get so sick of people saying that going out will be ‘good for me’.  NO it won’t!  It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite!  Lol!  People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however.  Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active.  Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

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