I know this is tough. We don’t want to be a burden by trying to connect. I have to remind myself to let my MS do the talking. We might be having a bad day and we might sound drunk. We might be beyond exhausted or having pain. Connecting with non-MSers can be hard.
You have to take care of you. I often “hit the wall” so to speak and just Continue reading
By Penelope Conway
Every week when the nurse comes to my house I’m always asked the same questions. Am I experiencing any pain? What kind of pain? How does it feel? How’s my appetite? Bowel movements? Swallowing troubles? Breathing? It takes the entire visit to explain everything. Pain shifts moment by moment from Continue reading
If you are like me, I try. Everyday is new. We have a “new me” daily. Some days we are the broken car in the garage and some days we are a strong engine.
On days your engine won’t turn over, don’t beat yourself up. We all have bad days. Some have really bad days. Try to hold on to something. Chocolate is meaty, but it makes things better.
I have had days that Continue reading
Another MS enemy can be dealing with holiday traditions and family. Keep some, ditch some, and create some. MS is a big nasty gift. Pick through the mess for things you like.
When our kids were young, matching Christmas Eve PJs were a must. News flash, teens boys don’t like that. I still Continue reading
By Penelope Conway
’Twas the night before the holidays, when all through my body,
Not a nerve was behaving, making me move rather shoddy.
My daily activities were chosen with care,
In hopes that each one could be done from a chair.
Each word that I spoke seemed to come out all wrong,
So much to be finished, I had to stay strong.
And John in the kitchen, and Missy making frappe,
Everyone busy working, no time for a nap.
When somewhere outside there arose such a clatter,
I peeked through the window, to see what was the matter.
I tried to move fast, to get to the door,
But I didn’t quite make it, and wound up on the floor.
As I lay on the rug, making sure nothing broke
Through tears I could see it, even gave it a poke.
Yes, what to my wondering eyes should appear,
But the cane that I lost, earlier this year.
Then the front door cracked open, and before me he stood,
I immediately knew help had arrived which was good.
And more rapid than eagles, his phrases they came,
And he whistled and shouted, and called them by name.
“Now hang on, now slow down, now take more life pauses,
With stressful, and chaos, and tearful day causes.
To the end of the checklist, to the end of the hall,
Now dash away! Dash away! Dash away all!”
And then I could see, as I wiped away tears,
Why, his words and his wisdom had settled my fears.
As I sat on the floor, too weak to even move
He knelt down beside me, and said I have nothing to prove.
He looked a bit weary, as a glance we exchanged,
And he said that my focus is what needs to be changed.
What’s important is family and those who are nearby.
(On that last one he actually said with a twinkly eye.)
Your weakness…it’s real. Your limits…real too.
MS has this way of making even brilliant days blue.
He smiled as he spoke, and I knew he was right.
No more pity party moments or MS fist fights.
He spoke not a word more as he helped me to stand.
I found myself smiling as I reached for his hand.
I sat on the couch as he gave me a nod,
He helped me to see that my thinking was flawed.
Then he sprang to his sleigh, and to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, “You’re doing great, don’t forget,
To pause more and smile, you have nothing to fret.”
*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.
By Lauren Kovacs
I was employed outside the home years ago, but I chose to stay home when I started my family. Just when I was ready to go back, after 12 years, the MS had other plans. Routines and MS are a must, for me now. I love routine! I can’t do “last minute Lucy” or be spontaneous.
I have the same foods for breakfast and lunch. This helps me keep my bowel routine. If I have not gone potty that morning, I rarely leave the house. Staying close to my diet is tough, when away from home. I love junk food. Gosh, I love it. I really love gluten too.
I nap at the same time everyday. Even my dog knows when naptime is. I schedule everything before noon. Even Provigil let’s me sleep. Routines are essential.
You do have to bend the routine at times, however. Just make sure you have a plan, if your routine takes an unexpected turn. Knowing ahead of time what to do, if your routine is pushed off a cliff or thrown into a muddy ditch.
A recent two-day beach trip left me for dead. I knew the MS sharks would circle the chum, but I did not have a plan. I ate out and while it was tasty, the gluten boat threw me in with the chum. More MS sharks circled.
It took days of fatigue, tears, stomach issues and fights with other germs to come out on top. I conquered the mountain. When I only needed one nap a day, I knew the current was changing.
Two weeks later I was still in bed by 8pm but, my three boys had a blast so, it was worth it. I still was face down in the bed trying to get a nap. Alas, I was finally able get into the bed and didn’t need to sleep on the floor.
MS is not glamorous. Have plan B and C. Routines are wonderful, but have a back up plan or two or three. Being thrown off a cliff might seem ok, if you can climb up. Once you make it to the edge safely, then what? Don’t think that because you feel ok that you are.
By Stacie Prada
Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers. While I still work in the same organization, I work in a completely different field. Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.
My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.
The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility. I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle. That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week. Sometimes it worked, but more often it didn’t.
When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.
A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.
In my new position, I still learn and grow every day, I contribute to my community, and I help people. I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.
There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire. My job now works for me today, and I hope it works for me for some time.
While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself. When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.
Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.
I’ll never willingly leave a job without having my next life chapter ready to start. As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.
*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/
By Lauren Kovacs
Step right up and get your tickets for the carnival of summer with MS. Don’t be shy about entering the MS fun house. Try and visit places before the landscape melts in the summer sun. Distortions can be fun and dealt with at the same time.
MS is not fun, I know. Attack it with caution and preparation. Fatigue is an annoying clown that follows you around the carnival. It taps you on the shoulder just when you get your cotton candy. It makes you see it as a fluffy pink pillow. A nap would be nice. Take charge and eat it. I hate clowns.
Sandals can mean cool (temperature wise) feet. Cool feet often lead to cooler bodies. If you are a lady treat yourself to a pedicure first. I recently could not expose my toes because my son told me my feet were “jacked up.”
Stay cool by hanging out in the shade, if you skip a ride, for example. Eating ice cream or a snow cone can help cool you. Just use two hands because fatigue and/or heat can bring on tremors. I learned this by launching my ice cream cup at my mother-in-law. It missed and we laughed.
Laugh at yourself. MS can be funny. It can be very mean, but humor helps calm that beast. If you make light of something you did, it seems to help everyone to move on. Yes, I threw my ice cream cup. Funny. Next.
Wear wrap-around polarized sunglasses, and a hat that you can wet down. I had my manual wheelchair, when we went to a theme park recently. One of my sons pushed me and I occasionally closed my eyes to block out over-stimulation from sights. The glare was reduced when my eyes were open. Too much to look at can increase my fatigue. Glare drives me nuts.
Drinking only water can help limit bathroom trips too. I love soda and I often need the kick from caffeine. However, sticking with water is better. Fewer bathroom trips also help limit fatigue. Wear an incontinent pad, if you need to. They are bulky, but if you are sitting no one knows.
Limiting sights and stopping in shade helps slay the fatigue clown. Only drinking water limits the energy exertion involved with numerous bathroom breaks from caffeinated beverages. Proper sunglasses and hats you can wet down make a big difference. Wearing sandals, if your toes are pretty, can help keep your body cool too.
The summer carnival of life with MS can be tough to navigate. We are always trapped in the fun house. I know it is not really fun; however, the many distortions in our lives can be dealt with. Preparation and humor can help smooth that wavy mirror in the MS fun house.
Go enjoy yourself. Limits are all around us, but do your best. Shade, frozen treats, and limiting energy sucking activities can assist us. Try and stay involved and fight the inner hermit. Send that fatigue clown to the naughty corner, while you enjoy life. Know your limits and have no regrets at the same time. Have a churro. Chocolate melts.
Spring has sprung, which means the weather is warmer, the flowers are blooming, and of course, spring cleaning and organizing is upon us! We’re sure everyone would agree that spring cleaning can be a tiring activity. However, for individuals with chronic conditions, especially those with accompanying fatigue like MS, this can be even more of an arduous task. Cleaning and organizing can be exhausting, and physical clutter can create mental clutter and even anxiety.
But our writers here at MultipleSclerosis.net get it. They understand the struggle and have written multiple articles around the topic of managing household chores and cleaning. So, we’ve created a compilation of the tips and strategies they shared to make it a bit easier to take on the spring cleaning frenzy.
When going through clutter or miscellaneous items, try managing it with five categories:
Ask for Help
Cleaning and decluttering is a process that takes time and maintenance, and it’s never a bad idea to seek help if needed! As always, you know your body best and what it needs, as well as when you should or shouldn’t push yourself.
Although often daunting, have a clean environment and reducing clutter may have a more positive impact on your life and journey with MS than expected!
Self Care by it’s very definition is “Care of the self without medical or other professional consultation” (or at least that is what Dictionary.com says). The very act of one caring for oneself would seem would be natural and come without thought. Then why is it so incredibly hard for individuals to practice self-care? We spend hours, weeks and years of our lives making time to care for others, putting others needs first and making to sure to be there for those around us who call. And while I’m sure this is incredibly helpful to the friends, neighbors, coworkers and loved ones who we give our time to, we often suffer in the name of others.
Please don’t get me wrong, helping family, volunteering for organizations, being there for friends and coworkers is valuable and vital to building good community and connection, but taking the time for self is vital to you. Often, and I’m probably not alone in this, I feel selfish and self-centered when I turn down working at a community event, changing plans to help a friend move or asking someone else to take something off my plate. But it’s important to remember that “an empty cup has nothing to pour out.” So if you are depleted, running on empty, feeling emotionally or physically fatigued, not only will you personally feel the weight of it but possibly the interactions you have with others will also be impacted.
What is self-care? That looks different for every person. I enjoy a cup of coffee in the quiet of the morning on my back steps, going to the movies first thing Saturday morning when I’m the only person there and taking my favorite playlist with my DSLR camera and getting lost exploring my city on a beautiful day. Yours may be similar but it may also be completely different.
I’m a fan of podcasts and educational talks. If you have not heard of them, give TedTalks a try. They have a section on the importance of Self-care. And if you don’t want to take my word for why placing an emphasis on self-care is so important, give them a listen as they give ideas, tips and why behind the what of self-care. Listening to their talks may just be an act of self-care in itself 🙂
