The Social Butterfly

By Lauren Kovacs

Staying social is a huge obstacle for many people with MS. Even before MS, I was more of a wallflower than a butterfly. Now, I struggle with my inner hermit. I think I might be allergic to people.

Like a butterfly that has two wings for balance, so does a social life with MS. Balance is key to our safe and an even flight into the world. We cannot fly with one wing.

Socializing outside can inject heat into your plans. Just as you pack for a beach trip, pack your MS bag. Be prepared for anything. Good thing my sons are Boy Scouts. Being prepared is their theme.

Planning ahead makes for a smoother flight. Look at the temperature and the humidity level. Know where and how close bathrooms are. For me, heat boils my guts. Bubble, bubble toil and tummy trouble is my summer cheer.

Stay cool however you can if you are outside. Jumping into lake water might be your only option. In my case, flopping off the edge of the boat or being thrown in is my method. Air conditioning is best. Don’t suffer in silence. Butterflies are silent creatures, but let people know when you are too warm.

You need to know your limits. Boating above 80 degrees with high humidity is not an option for me. The lure of delicious KFC chicken and a good time are not enough for me to risk turning into a wet noodle with tummy issues.

Be a social butterfly when you can, on your terms. Butterflies are cold blooded and like the heat. However, like there are thousands of different butterfly species, heat effects us all differently. A wet rag slurring his or her words is no fun to be around. You don’t want to be a hermit, but socialize smart.

If my feet are cool, I feel better. Investing in several pairs of sport/water sandals is a must, for me. If I am neat water, my feet are in it. I always make sure to get a fabulous pedicure. Painting my own toes is just ugly.

It is a struggle to be social in summer. Be a butterfly when it is cooler. Sitting around a fire pit at night toasting marshmallows can be just as fun as boating with friends. Slap on some bug spray and enjoy the night. Butterflies are sleeping, but the owls are out.

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Who’s in Your Social Network?

It’s beginning to look a lot like Summer. Rising temperatures have engulfed many parts of the country as we head into three months off for many schools and time marked by vacations, day trips and outings around town. One of the things often associated with summer are the get-togethers with friends and family, cookouts and time to connect. After the long chill of winter and rains of spring, being social and connecting with others can breathe new life into our daily routines. But being social can also be difficult to manage and navigate. Where to start and what to do to put yourself out there are some questions that you may ask as you venture into being social. Here are some helpful things to keep in mind this time of year as you look for ways to put yourself out there.

  • Set a goal: This summer I want to make one new interaction a week. Goals are important, they keep us accountable and give us something to aspire to. Make sure your goals are reasonable, obtainable and of interest to you.
  • Reach out to volunteer: Volunteering is a great way to meet new people, discover a new interest and also give back to the community around you. There are sites such as Volunteer Match as well as your local community center than can help you get started.
  • Plan something you’ve wanted to do: Maybe you’ve been saying you want to have people over or get together with a friend who you haven’t seen in a while. Now’s the time to reach out and put something in the books.discuss
  • Give the internet a try: Now I know the internet is pretty much part of all our lives and one of the reasons is it’s ability to provide us with new and fun ways to interact. Join a new online community such as MeetUp.com where you will be able to find local opportunities to join others interested in board games, cooking classes, paint nights and any number of activities.
  • Give yourself a break: Doing new things and getting out there to meet new people or even planning things with those you know can be a lot, but it doesn’t have to be overwhelming. Give yourself a break if your goal is to make one new interaction this summer or you have to reschedule that dinner with friends. What’s important is that you are seeking the engagement and building new connections.

Staying social is great to our overall well-being. It gives us outlets, keeps us connected and provides other individuals that we can reach out to in times of need. This summer add some points of contact to your social network.

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Making Relationships a Priority When I’m Tired and Everything is Important

By Stacie Prada

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated.

Rethinking beliefs:

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritize Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

  • Text
  • Write an email
  • Write a letter or send a card
  • Call them on the phone
  • Skype
  • Meet for coffee, lunch or dinner
  • Go to a movie together
  • Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
  • Go to an event: Attend a concert, museum, or dance
  • Plan an adventure
  • Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

biking break cropped

*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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You Know You Have MS When…

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People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

  • After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
  • The simple task of washing your hair is exhausting
  • Your kids think that all you do is sleep and that you’re sick all the time
  • You are so tired that you cry, and no amount of sleep helps
  • Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
  • You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
  • You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
  • You are tired or fatigued all the time, and you can’t find the energy to take a shower
  • Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
  • Feeling well-rested is a thing of the past
  • You must have a plan B, C, D, etc.
  • You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
  • It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

  • Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
  • You’re the only one in the room saying, ‘Is it hot in here?’
  • When 70 degrees feels like you’re standing inside of an oven
  • When you can’t do any outdoor activities due to the heat
  • When summer heat hits the triple digits, and you can barely breathe
  • Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

  • You can’t play with your kids or take a walk with your husband
  • You fall over when standing still
  • Your upper body starts to walk, and your legs don’t get the memo in time
  • You don’t even realize it when your legs go out from under you
  • You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
  • You just tip over when standing still on level ground
  • When you wake up one morning, and you’re paralyzed on one side of your whole body
  • You keep tripping up over nothing
  • You are always dropping things
  • You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
  • Your hands are asleep and they don’t wake up
  • You are eating dinner and your arm suddenly jerks and your food goes flying across the table
  • You walk like you’ve had a few cocktails, but you haven’t had a sip
  • You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
  • You have to stop mid sentence because you’ve lost your train of thought
  • You take the dog for a walk around the block,and your legs feel like they are encased in cement
  • You walk like you are dancing to Michael Jackson’s “Thriller”
  • When your knees are locked as though there’s a magnet holding them together
  • When you go from 0 to pee in two seconds flat
  • You have to hold on to walls because you lack balance
  • You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
  • You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
  • You can’t stand without assistance
  • Your head goes one way and your legs another
  • You have to look at your hand and tell it to move
  • When you can’t pass a field sobriety test while sober
  • Despite only being 41, you walk like your 76 year-old mother
  • You have to lean your elbows against the shower wall to wash your hair

 Your mind isn’t as sharp as it used to be

  • You lose your train of thought while mid-sentence
  • You walk into a room and forgot why you went in there in the first place
  • You have the hardest time trying to say what you want to say, and your words come out making no sense
  • You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
  • You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
  • What was the question?

Pain and numbness become a part of everyday life

  • Your feet feel like they are on fire or you have frostbite
  • You are numb and tingly and have burning sensations all over
  • You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
  • You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
  • You feel like you are being stabbed, and you have a tingling feeling all over your body
  • You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
  • You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
  • You “feel” noises that go straight to the bone with subsequent weird pain!
  • Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
  • You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

  • When everyone assumes you are normal and they say, ‘Let’s go – get with it’
  • Your friends and family think you are fine because you look the same, so they think you are just being anti-social
  • You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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