Some of the Highlights of My MS Library

The library and book store helped me immensely in my journey to adjust to living well with Multiple Sclerosis. Prior to purging my library, I took stock and reminisced how each book provided a portal to another way of seeing things.

I've read a lot of books about Multiple Sclerosis. I literally read every book I could find at the local library – no exaggeration - and then every book I could find and afford at the bookstore.  There were memoirs by people with MS, how to books written by people living well with MS, and other how to books by doctors suggesting they have the answer to MS. I've soaked up novels with fictional characters with MS, and I've devoured books about people with other health issues to see how they deal with issues often found in MS.  

Take this unpredictable disease that is completely different for each person, and find a book that will describe to me what I should expect. Explain why I feel the way I do, and tell me what my future holds. Tell me what I need to do live my best.  Easy.

I gleaned something from everything I read even if it showed me things that wouldn’t work for me. There were single phrases, lessons, and relatable events in books that made the time spent reading them worthwhile. Other books provided perspective and suggestions throughout that helped me find strength and motivation to take on my own challenges. 

Just a few of the books that touched me follow:

29 Gifts by Cami Walker – I LOVED this book and gave it to everyone in my family for Christmas one year.  It was after reading this book that my perspective really shifted about my value in the world. Through practicing daily giving, I learned the wide range of gifts I’m able to provide that don’t depend on money, my job, or my mobility. It convinced me that even if MS takes all it can from me; I’ll still have value and an ability to contribute to society. See the rest of my post, Fear, Gratitude & Hope Through Giving.

Michael J. Fox’s books, “Lucky Man,” “Always Looking Up: The Adventures of an Incurable Optimist,” and “A Funny Thing Happened on the Way to the Future…” inspired me greatly.  I felt a kinship to Michael’s attitude and approach to life living with Parkinson's Disease.  They were easy reading, relatable and not intimidating, and they lightened the mood on really hard life situations.

“Crazy Sexy Cancer”documentary by Kris Carr was one of my early favorites and led me to read three of the books she wrote soon after the documentary came out.  It was early after my diagnosis I saw an interview with her while I was home recovering from an exacerbation and steroid treatment. I tried her dietary suggestions, and I incorporated juicing and drinking smoothies into my diet.  While eating vegan didn’t make me feel better, it was a good experience and worth trying. I still follow some of her recommendations, I admire her positive attitude and drive, and I respect her immensely.

“MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis,” by Allison Shadday was given to me by my diagnosing neurologist. She said that a grant had been provided to gift the book to all newly diagnosed MS patients.  I poured through that book and the National MS Society website in my first month.  While the website was informative, it was overwhelming.  The book was terrific at keeping things at a level I could follow. 

Dr Terry Wahls' TedTalk turned me into a full-on Wahl’s Protocol following advocate. I don’t like that people suggest she reversed her MS, but I’ve heard she didn’t make that claim. Her health suggestions have improved her health tremendously – from declining health and in a wheelchair to being fairly active again – but my opinion is such is the nature of MS. That said, I think she has a lot to offer.  I follow a lot of her dietary advice, but I’m still not including organ meat into my diet.  I tried for a while, but it didn’t stick as a habit.  I toy with the idea of adding it again, but it’s on my list and will be a priority when I’m able to take it on again.  Check out her books, “Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair. 2nd Edition,” and “The Wahl’s Protocol.”

I could go on and on, but this post would never end and likely get overwhelming.  These and many other books were a lifeline for me when the internet wasn’t the abundant resource for these issues like it is today.  I found over time that I was searching for people who knew what I was going through and could give advice.  While following their suggestions strictly hasn’t been the permanent path for me, I tried them and determined for myself if they worked for me.  Certain suggestions and moments they described thrilled me with their insight and compassion. These books kept me more evenly keeled than I would have been otherwise.  They gave me hope and motivation to keep going when things were rough.

Wearing the Pretty Shoes: Part II

With only one exception, I’ve converted all of my shoes to accommodate my unsteady feet. Every time I opened my closet, I’d see shoes I loved but would be risky to wear.  I realized their presence in my wardrobe brought out feelings of sadness, and I decided it was time to let them go.  

Over a period of months, I’ve noticed when my feet buckle and would critique my shoes to see what it is about them that gives less support.  Shoes that I would have thought would be fine since they were low heeled and comfortable still weren’t working for me.  I’ve browsed shoes online analyzing what attributes I need to stay steady on my feet.

For now, I’m able to wear heels so long as they have a block heel.  They have more surface area connecting with the ground. Those that don’t taper support my feet side-to-side.

Given I still want to wear shoes I like and express my style, I took my time choosing replacements for my existing shoe wardrobe.  I wear a lot of skirts and dresses for work, so my shoes are often visible.  While some block heel shoes can look frumpy, others are stylish and chic.  The photos below show shoes I’ve purged on the left and shoes I’ve purchased on the right. 

 

I think it’s important as I adjust to MS symptoms to reduce the feelings of loss and punishment as much as possible.  While shoes may seem like a frivolous area to put time and attention, it’s an expression of our individual style.  Encountering new limitations on how we dress can be the “one more thing” that MS takes from us and wears us down.  It can be a constant reminder of how we have to make do with disease progression.  Adapting and feeling like I’ve retained my ability to express myself through fashion is empowering. A bonus is that I still get compliments on my shoes, and when that happens I don’t feel like I’m having to just make do. Instead I feel stylish and confident, and that feels good.

Read Wearing the Pretty Shoes While I Can and Experiencing MS Milestones for Part I on shoes.

You Look Good, You Must Be Doing Well!

I hear it whenever I see someone I haven’t seen in a while.  “You look good, you must be doing well!”

Thank you. Really. But I’m not really doing well. I’m doing everything I can think of to try to feel better.  Things like eating healthy, being active, getting sleep, socializing, and connecting with loved ones. I’m sitting in the sun for vitamin D, and it gives me a bit of color while sun bleaching my hair a bit.  All of these efforts make me look good. 

I’m researching my symptoms and doing the things suggested to slow my MS progression. I’m stretching, swimming and jogging.  People have assumed that because I’m able to be active that I’m doing well.  I'm active because it feels good, but I’m also active because I’m scared that my muscles will atrophy if I don’t. My muscles already hurt constantly, and all of my efforts aren’t enough to alleviate the pain or stop the jerky movements. My muscles are likely to atrophy over time in spite of my efforts, but I hope to slow the progression as much as I can. I’ve always strived to live a healthy lifestyle, but now it feels nonnegotiable.  It’s mandatory self-maintenance.  Whatever happens, at least I’ll know I did all I could.   

Someone recently told me that my prognosis was better than someone else’s because, “You have a good attitude, and at least you can control your MS somewhat.” I believe she meant well and was trying to assure herself that I’ll be fine. But it’s an uninformed assessment.  MS has no cure.  People with MS aren’t disabled because they didn’t do enough to stay healthy. There are a lot of theories and anecdotes for what helps, but nothing’s been proven to halt or cure the disease yet.  Each person’s disease progression is unknown and unpredictable. It’s really just the luck of the draw for how severely MS affects each person over time.

Thankfully I don’t look as bad as I feel. And it’s nice the things that help me combat my MS symptoms make me look better. So like Bill Murray says in Caddyshack, I got that going for me which is nice.

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

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 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.

Dealing With Embarrassing Symptoms: Constipation

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally.  Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss.  Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking.  People living with illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common Multiple Sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss.  Try to get over the embarrassment of bowel problems.  If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time.  You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem.  They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it.  Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command.  The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally.  It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this.  With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements.  While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

• Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
• Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere.  It may require getting up earlier and taking more time in the morning.
• Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
• Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
• Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
• Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
• Bowel training:  Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter.  The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.  
• Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement.  A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
• Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid and tea form available to soften stool if needed.
• Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
• Bidet toilet seat*: This attachment to your standard toilet can stimulate the body to have a bowel movement less invasively than an enema, and with time it can in a way train the colon to respond to the water.  It can also help reduce the instances of UTI's for some people who use a bidet.
• Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple.  When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms.  Be courageous. Be confident in your duty to advocate for your well-being.  Be a good example and resource for others who may need to find their own courage to do this someday.

* The suggestion regarding bidet toilet seats was added after a reader suggested it and described how it has benefited her. Many thanks!