MS and Loneliness

“If you see me out or even in pictures, there’s usually a great big smile on my face.  To say that I suffer from loneliness doesn’t seem to make sense.  There are so many times though, where I sit and think to myself that I’m alone, that no one really understands me.”

This was just one of the many powerful quotations our contributor, Devin, recently wrote in his article The Loneliness of MS.

Even if well-meaning people say they understand how multiple sclerosis is impacting your life, it’s unlikely they do. And after reading this article, our community shared an outpouring of comments expressing their similar experiences.

Below are some of the thoughts our community shared:

I can’t get out and do things with others.

  • “The part I find most difficult isn’t actually being alone but the lonely feeling you get because you can’t do the things you once did with family and friends.”
  • “Fatigue alienates me more from friends than my obvious disability. Once you say no once or twice, invitations stop coming.”
  • “I feel especially lonely talking about events. I have an event in November. My thoughts are consumed with if I’ll be up to it.”
  • “Lost a lot of friends because of MS related issues, and I cannot go out and see those I do have often because of MS issues”
  • “My friends are into a lot of summer events, but there are so many unknowns…I don’t know how hot and sunny it will be, I don’t know if there will be enough chairs for everyone…will there be easily accessible toilets…I really don’t want to ruin anyone’s day. So better stay home.”

I feel different from everyone—sometimes even those with MS!

  • “People just don’t get it. I don’t feel ‘normal’ and it can get really lonely.
  • “A friend introduced me to a friend of hers who was dx 20 years ago, so she can give me advice when I had just been diagnosed. I realized how we were not at all in the same place. It was nice to know she was out there, but I still felt alone in my experience.”
  • “I suppose that’s why support groups are usually divided in at least 2 separate groups: DX less than 2 years ago, and all the others. I think either group could really overwhelm, and possibly upset, the other group.”
  • “I feel very lonely. Even though I am not physically alone, I am still alone.”
  • “My family tries so hard, but every time they accommodate me, I just feel different, and I feel alone.”

It’s not all loneliness, though: some of you offered solutions for easing those feelings:

  • “I have made the choice to look at my MS disability changes in my life that everyone I know is going to face the same challenges as we all age, I am just ahead of the curve.”
  • “Having a dog does help some. For me any way.”
  • “Online communities make a huge difference. It’s not a perfect solution, but I often feel closer to my online friends than my other friends”

While it does not fix this impactful issue, many in our community took solace in the fact that they were not alone in feeling alone. Sharing your feelings and experiences with others online can be helpful. How about you?

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Annual AAN and CMSC Meeting Highlights

Every year, the American Academy of Neurology (AAN) and the Consortium of Multiple Sclerosis Centers (CMSC) hold meetings to present on topics of interest to the multiple sclerosis community.  This year, the annual AAN meeting was held in Vancouver, Canada in April and the CMSC meeting took place in Maryland at the beginning of June.

After each meeting, MSAA condenses all of the information presented at these meetings, which is meant for medical professionals, to easy-to-read articles to keep you informed about what is new in the world of multiple sclerosis.

Both meetings this year covered a range of topics, but here are a few items highlighted in MSAA’s annual review of these meetings:

  • Updates on a sampling of approved and experimental treatments
  • Trial results for new symptom-management treatments and programs
  • Interesting studies on pediatric MS, risk of MS, and children of parents with MS
  • Various other topics, such as gut immunity, the effects of poor sleep, and gaps in public awareness about MS

Read the full article on MSAA’s Latest News section to see more topics presented at this year’s meetings!

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(Last Minute) Summer Fun

As we continue to pass through the summer months and find ourselves looking towards a change of season (hopefully soon!), there’s still some time for fun to be had during the remainder of the summer. At times it can be difficult to try to make plans or schedule activities if the uninvited MS decides to rear its head and join in. But there are some last minute ways to try and enjoy the rest of the season, without having to make elaborate plans that MS will try to outdo.

There are times when heat-excessive summer days call for indoor activities, so why not have a game day/night? Getting back to a time where playing board games and cards was all the rage can be fun and nostalgic, and a good way to find some last minute amusement with friends or family. And keeping with the indoor theme, how about a movie night? Gathering together to watch a good flick, even if coordinated last minute, can be relaxing and entertaining. Orchestrating a last minute trip to the movies or visiting a museum or aquarium can also be some fun activities that may not require excessive planning but an opportunity to enjoy events of the season.

Check with community offices and message boards in your area to find some local events being held during the rest of the summer. Concerts, festivals, shows and exhibitions are just some of the local activities your community may offer that you can take advantage of last minute. Sometimes trying to take part in an activity that’s more spur of the moment and last minute can work to your benefit, especially if it catches MS off guard and doesn’t give it the opportunity to invite itself!

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Getting Back to Nature

Did you know that across our country there are amazing State Parks you can visit and enjoy?  What a great way to explore new parts of the country or even a local state park in your own back yard.

NPS-Centennial-ImageNow that summer is here, hopefully you have a little extra free time.  A great way to use that free time is to get out and enjoy nature.  Whether sitting in your backyard or going to a local park, taking in the sights, sounds, and smells of nature can be very relaxing and  therapeutic.

State Parks are also a great place to become one with nature.  While they might be a little further away, they are well worth the trip.

The state park entrance pass system works differently in each state. Many states offer some sort of pass that allows for unlimited entry at most state parks, while others offer park passes on a park-by-park basis. A few states do not charge entry fees to their state parks at all if you are a resident of that state.  Most states even offer a Disability Discount Pass for people who have documented disabilities.   All fifty states are listed below, with a link to their official state park website and information on their state park entrance pass program. Find your state, order an entrance pass, and enjoy unlimited access to the natural beauty your state has to offer!

 

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Summer Love

By Lauren Kovacs

Summer is a double edged sword for many with MS.  Making the monster happy is a battle.  While winning the war may not come until a cure, small victories can be celebrated.

Heat is a battle most of us fight.   Staying cool is essential.  Cooling vests with the ice packs work well.  I don’t enjoy looking like someone on safari suffering from some weird allergic reaction, but it is better than the alternative.  Lumpy ice packs stuffed into a vest are not a fashion statement anyone wants to make.

Stick to a routine, as much as possible.  I know having kids home for the summer is like herding drunken cats.  As a mother of three boys and being a frequent wheelchair user, I am very familiar with the struggle.  Pick an activity indoors, like bowling.  It is cheap and you can bask in the A/C with caffeine and cheese fries. You can still participate from a comfy chair.

Fatigue it my number one enemy.  It cuts me down with one swoop and then stabs me to be sure I stay down.  Coffee and soda are the poison of choice for many.  But, as caffeine is a diuretic and liquids have to exit the premises, these are not always good options for those of us dealing with tight time limits on the bladder.  The caffeine crash is another unsavory blow.

I have found timing is everything.  Time medication and naps to your daily needs.  My secret weapon is caffeine gum.  Chewing caulk-like gum is gross, but it gives me a wee kick without frequent trips to the potty.  Using the potty, for me, has its own gymnastic routine.  It also means using precious energy.  I feel like a gnat in winter already.  I cannot afford to use energy on potty breaks.

Take summer slow.  Summer days drift away so fast, but enjoy it too.  MSers are great at balancing.  Enjoy what you can, when you can and however you can.  Sitting in a lumpy cooling vest chewing caffeine gum is far better than missing out.

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Where Did It Go?

I can’t believe that summer is halfway over! I remember as a kid my parents telling me that time speeds up as you get older and to treasure how summer was. Of course being the precocious child I sometimes was, I would respond ‘Oh please, you’re pulling my leg. Time is still the same no matter what”. But… my parents were right. Time has seemed to speed up and it’s weird but not being in school and having summer break to look forward to, the start of another school year to dread and those 3-ish months to soak up and enjoy as much as possible free afternoons and outings with friends, time and the summer just go running by. Remember when summer was special, it was what you lived all year for? You counted down the days right around Memorial Day. Started planning what you were going to do the first day off, how many times you were going to go to the pool, mall, movies, amusement park, Maria or Tim’s house (insert your own childhood friends names of course). The smell of summer, the warm breezes and long hours of light, it was all you could do to keep yourself in your desk ’til the last bell on the last day of the year. Then summer seemed like this endless thing in front of you.

Nowadays summer is the pretty much the same as spring and fall and winter. Work, weekends, occasional days off. Appointments, errands and holidays sprinkled in. Summer is going by pretty quickly and from time to time I sit in my car after a long day at work, on my back patio on a Saturday morning, or on a walk down some nearby trails and think where in the world did the time go. I know we’ve all heard it before ‘Make the most of the time we are given’ or ‘Stop occasionally and smell the roses’ and they seem like ancient clichés that we smile and nod to when people older than us expel them for our benefit. But truly as someone who is at 31 finally, albeit slowly, learning the value of the time I have, I’m telling you… stop for even a few seconds and really take in the sunrises and daylight that lasts past 8pm, cool breezes on hot days and small moments of reflection in this second half of summer before it’s gone. Slow down for a moment and just… take it in. Take in the here and now, the age you are and where you are. Appreciate the things you have and try not to dwell on the things you don’t. Appreciate the sunrises and sunsets, the ocean breezes off the shore, green leaves building canopies over walkways, the light streaks the sun makes thru windows, the sounds of kids playing without a care in the world. Don’t let time just go whizzing by and before you know it end up realizing that it’s August 31st and then think ‘Where did the time go?’.

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5 Reasons to Give Swimming a Try

Aquatics PhotoNow that summer is in full swing, are you looking for alternative ways to stay cool while getting in some exercise? Head to the pool! Swimming and other water-based exercise can help with many symptoms of MS, including loss of mobility, balance and coordination, as well as fatigue. And the cool temperature of water can help prevent overheating, which can worsen MS symptoms.

Even if you’re not confident in your swimming abilities or you just don’t like dunking your head underwater, there are plenty of other ways to exercise in the pool.  Many fitness centers and area municipal pools offer aquatic classes including water aerobics, walking, and aquatic treadmill.

Swimming is an aerobic activity, so it’s good for your heart and your muscles. Here are more reasons why you should consider giving swimming a try:

  1. Buoyancy: Water supports 90% of a person’s body weight, reducing joint stress, pain, and fear of falling
  2. Resistance: Water-based exercise builds muscle and enhances stability, flexibility, and balance
  3. Pressure: Swimming allows the heart to work with less stress, reducing swelling and pain in lower extremities
  4. Temperature: Water transfers heat energy more efficiently than air, which can help moderate body temperature
  5. Overall Wellness: Socializing at the pool, having fun, and relating to other individuals can have psychological benefits.

Find more tips, resources, and inspiration to get started on MSAA’s Swim for MS Online Aquatic Center at aquatics.mymsaa.org and check out our Aquatic Exercise and MS – Tip Sheet.

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Hot, Hot, Hot

Being halfway through July we can surely say the summer season is in full swing, and for those with MS it’s no secret that the heat and humidity of the season can be a real downer at times. MS heat sensitivity can result in aggravated or worsened MS symptoms and help to contribute to an overall disliking of the summer months. This can be disheartening because many individuals enjoy this time of year, with outdoor activities and events that beckon and get-togethers that warrant much time outside—shame on MS for trying to corrupt this. But there are things that can be done to try and overcome the cruel intentions MS may have during this time of year, and some may already find themselves doing them.

  • It might be tricky at times, but when you can, get outdoors when the temperature is more manageable. Going outside earlier or later in the day/night can help you avoid the hotter temps throughout the day.
  • When possible, engage in activities that are in cooler/air conditioned places. If you have to be outside, try to take breaks in shaded areas or indoors when you can.
  • Wear cooling products like neck wraps or vests that can help to reduce heat sensitivity issues and keep your body temperature down.
  • If you’re not in the mood to travel or go out due to the heat, have friends or family come to you for a visit.
  • Explain MS and heat sensitivity issues to those close to you so they have an understanding of what you’re experiencing and why there may be some limitations during this time of year.
  • Try to stay actively engaged in the activities and events you enjoy during these summer months. Adjusting the timing or setting of your interests or finding new things to participate in can help to combat the heat factors.

There’s a line you can draw with MS when it comes to your likes and interests. If you enjoy the summer season take part in things you’re able to or try new experiences, and let MS sizzle by itself under the summer sun.

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Introducing Susan Russo – Artist & MS Conversations Newest Guest Blogger

By Susan Russo

My name is Susan Russo and I was diagnosed with Relapsing Remitting Multiple Sclerosis back in 2001. I live just outside of Houston, Texas in the town of Pearland. I recall when I first moved here, the local folks said there are three seasons in Texas – Summer, July, and August! And there’s never been a truer statement made. Living in the Texas heat is a challenge for anyone, but when you have multiple sclerosis, a “typical, fun in the sun summer” simply does not exist, as least in my world.

Growing up in Northeast Ohio, my summers consisted of camping in the backyard, catching fireflies, and playing blind-man’s-bluff until midnight. How I remember, the endless days spent swimming in the local pool while munching on frozen Zero candy bars and chasing all the cute boys.

In Texas, my summers are spent primarily indoors, but that is not necessarily a bad thing.

I love my solitude. But I also appreciate being around people and staying active. I schedule my grocery shopping for later in the day, towards dusk, because carrying a few bags from my car to my front door in 100 degree heat can make me feel like I’m going home to Jesus at any moment! Thank you Lord for air conditioning.

I also love to swim. The Pearland Natatorium has an incredible indoor lap pool. My favorite days are when the Houston Texans football team show up for their Spring Training workout schedule. Best day ever! Nothing like beautiful eye candy to keep you motivated! Yup, I still chase cute guys.

Here’s the thing about multiple sclerosis. Just because it’s summer, doesn’t mean you cannot have fun, indoors or out. It took me a long time to understand this simple concept. You just have to choose what is right and most comfortable for you. Work “with” your disease. Not “against” it. Make sense?

Here is what I finally realized:

  • My favorite, year-round footwear are flip flops with glitter
  • I am addicted to binge watching on Netflix, for real, people. ( I think I may need therapy)
  • My Thursdays are spent watching the Blue Bloods marathon
  • I can have all the popsicles and vanilla ice cream cones I want (with sprinkles on top), without it dripping down my shirt and pooling into a huge glob of melted goop, before I even take my first bite
  • I can volunteer for my local community or sign up for interesting summer courses
  • I can see a movie at the local theater with absolutely no crowds, long lines, or someone’s big hair style up-do blocking my view.
  • Did I mention, I can eat all the popsicles I want?

And of course, there is always my precious art. For those who know me, and for those who do not, I am an artist. My creativity is my saving grace, especially during the mundane summer months along the Texas Gulf Coast.

Summer is going to arrive, every year; hot, super hot, or indifferent. That’s a given. But do not despair my fellow MS warriors. The days sprawled outside in my lawn chair, sipping iced tea with lime, under the glorious blue skies and feeling the semi-brown prickly grass under my feet, (along with the mounds of fire ants) are not gone forever.

When autumn and winter arrive in Houston, that is when my true “All Things Summer Event” begins. Just imagine 70 degree days, bright amazing sunshine and no humidity along with crisp, cool breezes that lasts for days and sometimes even weeks. Yes, even weeks.

Oh…and sometimes it even snows. Yup, it snows. My “favorite” time of year, besides summer, of course.

"Seasons of Summer" by Susan Russo

“Seasons of Summer” by Susan Russo

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Why Did I Wait So Long? Considering Advice, Rethinking Success, and Setting Small Goals

By Stacie Prada

Sometimes it seems that advice for better health sounds like we need to do more, be better, and just generally suck it up buttercup.  I’m not impressed by stories of people saying, “If I can do it, anyone can do it.”  It completely ignores the fact that the other person had a challenge and may not have been able to do it at a different phase of their life.  It also may be something that they won’t be able to maintain for the rest of their lives. It basically ignores the individual circumstances of our own physical health, lifestyle and obligations.  We all have different demands and limitations, and we should only compare ourselves to where we are now and where we want to be given our interests and preferences. That said, other people’s stories often inspire and motivate me to take the next step on something I’d like to accomplish.

After my MS diagnosis, I read the suggestions to swim and do yoga.  I realized that I was very reluctant to do yoga, but I didn’t have a specific reason. I’d tried yoga videos, but they didn’t hook me. Later I realized that my reticence was likely because it seemed like it would be admitting that I was giving up on doing gymnastics. It seemed like accepting defeat. Once I went to a yoga class years later, I loved it so much I couldn’t believe I’d waited so long to try it! To be fair, I was busy. I was active doing other things. Life was full and doing yoga seemed like another thing I “should” do instead of something that I would enjoy.

More recently I started swimming, and it took me a while between knowing it was a good idea and actually going to the pool.  My reluctance to swim was more based on proximity, convenience and feeling slightly intimidated about all of the associated unknowns.  While talking with a friend about swimming, I shared that I was starting to think about my exercise schedule as a two week or monthly schedule instead of weekly.  With this approach, I could aim for doing certain activities once every two weeks or once a month.  That goal made it suddenly desirable and motivating for both of us to go to the pool.  By reducing the idea of success, it removed the barrier of over-committing or setting myself up for feeling like I’d failed if I didn’t continue. Once we got to the pool and swam a few laps, we were a bit giddy about how good we felt, what an excellent workout it was, and how well we each slept that night. Again, why did I wait so long to start swimming?

I’m not going to dwell on the past, but I do want to learn from these experiences. If something interests me, next time it might be good to think about the following:

  1. Can I try it once without committing to a regular schedule?  It’s not all or nothing, and it won’t be failure if I decide not to continue.
  2. Do I know someone who does it and will give tips about what to expect? This can help reduce feelings of intimidation or nervousness about new surroundings, people or experiences.
  3. Did I used to do it and enjoy it? If so, why wouldn’t I now?
  4. Do I have a friend willing to go with me? This makes for great bonding and mutual encouragement for healthy habits.
  5. Do I need special clothing or equipment? Try goodwill or other second hand shops for inexpensive gear so that I’m not out much money if I decide not to continue it.

MSAA advises people with MS to consider swimming and yoga for good reasons. They’re easily adaptable to different skill levels and physical abilities. They both are a bit meditative for me, and I’m relaxed even after intense workouts. They work lots of little muscles in my body in a gentle yet strengthening way. Plus, I always sleep better on days I’ve done them. I love when I incorporate good habits into maintaining my health even when it takes me a while. I hope to be able to keep yoga and swimming as part of my ongoing activities even if they’re only a few times a month. That’s still success.

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*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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