Are they for real?! Most multiple sclerosis (MS) commercials feel completely disconnected from your experiences of living with the condition.
We wondered how you would improve them, so we turned to MultipleSclerosis.net and asked community members to get creative! We asked our community to fill in the blank: “If you directed a commercial about MS, it would include ___.”
With more than 300 comments, they had some great ideas!
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It’s a well-known fact multiple sclerosis is different for each individual. What pains you might not bother me at all. MS symptoms can be as unique as one’s personality.
That’s why writing about the “ABC’s of MS” can be a real toss-up.
What “ABC” means to you could be totally different from what I believe.
Your “ABC” could mean “Always Buy Crisco.” Maybe it stands for “Absolute Best Cat.” Or, short for “A Bulky Corduroy.”
Only you know your particular definition.
In my experience, the “ABC’s of MS” stands for “Any Bathroom Close?”
Continue readingWhen my own MS began in 1980, there were only two organizations in the U.S. that supported multiple sclerosis – NMSS and MSAA. Although information and programs were quite scant at the time, development and availability began accelerating during the 1980’s.
There were no personal computers/internet, cell phones, or social media. My first MS peer connection in 1984 was arranged confidentially between myself and another member of the NMSS as a courtesy. Soon after, a team of MS patients began confidential, telephone-peer-counselor training sponsored by the NMSS. I was one of them.
Continue readingQuestion: What was most and least helpful when you were first diagnosed?
Answer: The people. Collectively, they were the most helpful. Individually, some were the most and some were the least helpful.
The people who listened, asked questions and validated my feelings helped me the most with my multiple sclerosis diagnosis. Answering sincere questions helped me analyze what was true at that time and what was fear for the future. Thinking through the issues and explaining my experience helped separate what I could influence from what I couldn’t. They offered suggestions while respecting my opinions and decisions. The paid support people who helped me immensely included my medical support team: primary care provider, counselor, neurologist, and physical therapist. The unpaid support team included family, friends, coworkers, online connections, and the local MS self-help group.
Those who told me what I needed to do or why I shouldn’t worry were naïve and ill-informed. They would prescribe treatments without knowing what caused my symptoms or what my symptoms even were. They’d tell me I’d be fine since someone they know who has MS is fine. They assured me I’d stay healthy to appease their own fears, not mine. They included people in all of the categories listed above who helped me immensely. A person’s profession or relation doesn’t automatically place them in the category of helping or hindering. How they behave and interact does.
The people who judged me harshly for how my health was impacting them caused the most stress, guilt and pain. I was criticized for being less attentive in my relationships and for letting MS be my focus. I believed it was a personal fault that I was burdening others.
I genuinely thought I should be able to deal with my health privately and keep doing everything I’d been doing for others. I wanted to be strong and prevent the people in my life from being affected by my diagnosis and documented chronic illness.
MS symptoms and exacerbations made me unable to meet the expectations I had for myself and others had for me. It helped me realize the expectations had always been unreasonable. I learned I’d never be able to be healthy physically and emotionally if I kept trying to meet unreasonable expectations.
I realized I can’t do this alone, and I shouldn’t.
The people who validated that I needed to address my health and accepted things would change – they helped me the most.
The people who were angry, hurt, blamed and resented me for their unhappiness – they helped force me to realize I didn’t need to keep working toward the life I’d been building, and I probably couldn’t if I kept trying. In a painful way, they helped me open my future to more possibilities. Changing things wasn’t failure, it was survival.
Survival requires self-care. To people who are used to benefiting from an unhealthy relationship dynamic, other people practicing self-care feels like neglect. It’s good that terms are available now to describe manipulative behaviors. Consider (and look them up if unfamiliar) gaslighting, shaming, isolating, catastrophizing, guilt-tripping, silent treatment, insults disguised as jokes, and jealousy are just some of them. Hopefully discussions and education on unhealthy relationship tactics help people recognize them instead of feeling responsible for other people’s feelings and accusations.
It helped the most when I and the people in my life accepted my health as a fact of my life and worked together to make the most of my abilities and limitations. They watch out for me, help me reflect, know my health may inconvenience them at times and always make it clear they are on my team.
We are united in our approach: Blame the disease, not the person.
*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. 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/
OK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.
Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.
So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift.
If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.
I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.
Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.
Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit. Nothing big or painful yet. Getting ready to turn that around with humor.
Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.
Living with a chronic condition — such as multiple sclerosis — can feel isolating at times, particularly during a pandemic. Especially in this last year and half, we have all learned the value of connection with other people. One way that people affected by MS have managed to connect and create a sense of community for the last five years is through MSAA’s online peer forum, My MSAA Community.
My MSAA Community is a free, online peer-to-peer forum for members to share their MS experiences. The community is a safe space that allows users to post a question and get answers from members of the forum, share their MS journey, connect with others, and contribute to ongoing conversations.
For the past five years, members of the MS community have come to this online forum looking for advice and connection from someone living a similar experience. With more than 6,500 members and more than 16,000 posts, you can find:
Join My MSAA Community and help us celebrate five years of camaraderie and connection for people affected by multiple sclerosis.
After a long and possibly pain-filled day, what anyone with MS wants is to fall asleep. But sleep is often difficult to achieve. For many people, the pain of MS either gets worse at night or fails to quiet down, keeping them awake.
This is called painsomnia. To find out more about how it shows up for folks in the community, we reached out on the MultipleSclerosis.net Facebook page and asked: “Have you ever experienced painsomnia (the inability to sleep or rest because your body is in pain)?”
More than 400 community members shared. Here is what they said about how and where painsomnia affects them.
The most common response to our question was that people deal with painsomnia every night. It is an ongoing problem that makes bedtime a dreaded event – and the stress of that can make falling asleep even more difficult.
“Every night I feel pain in my feet. I do not know if it is neuropathy. But it feels like if I move my foot, it would break off. Why does it happen when I lie down to rest? All my joint pain intensifies. I feel numbness, too. Most nights it is 2:00 or 3:00 AM before I can go to sleep.”
“Yes. Every day for the last 2 years. It is oppressive and miserable!”
“Every. Damn. Night. My legs and feet hurt the most. This last year or so, I have started waking up with 1 or both of my legs numb from my hips to my toes. My hands go numb every night too. Bedtime sucks.”
For others, painsomnia only happens on some nights. Some people explained that it can actually be more of a challenge to tackle this problem if you do not already have a routine or treatment in place.
“Some nights more than others!”
“Yes! Just last night. It does not happen often.”
Many people in the MS community shared that while they can fall asleep, this pain wakes them up in the middle of the night. After they are awake, the pain makes it so they cannot get back to sleep.
“I sleep for very little time, and I am awake by 5 am every day.”
“Yes, all the time. I have been up since 2:30 AM from pain, along with the MS hug this morning.”
“Yes, I cannot stay asleep, which just adds on to the MS fatigue.”
The overwhelming majority of people who responded said that they feel the pain in their limbs – the arms, legs, hands, wrists, and feet. The pain can show up as a burning feeling, numbness, or even spasms.
“Arms, hands, and spasms in my legs. Usually 2 to 3 hours after lying down.”
“Burning pain in my right hand/wrist/arm/shoulder.”
“Yes, mostly from leg cramps and bad back pains, but also it just hurts all over.”
“Mine is numbness and tingling in my arm.”
“Usually in my one heel, but recently it has started in my hands.”
“My legs and feet hurt the most. My hands go numb every night, too.”
The second most common response was that the pain appears where lesions are. MS lesions often show up as scarring around the central nervous system, including the spinal cord. It makes sense that people with MS can feel that burning and tingling pain in the neck or back.
“I feel it in the top of my neck, where I have a large lesion.”
“Yes. Back pain where my lesion is. I cannot stand it.”
We cannot heal what we do not recognize. Many respondents did not know that there was a name for sleep issues due to the pain of MS. Sharing our experiences helps others know they are not alone. Realizing painsomnia exists is often the first step toward reclaiming a good night’s sleep.
“Just about every night, but I did not have a clue it had an official name.”
“Yep, and now I have a name for it.”
Yep that’s me in my usual place on hot days… laying in front of the register, hogging all the AC.
Except on THIS hot day (the 1st one of the season) our air conditioning was on the fritz. There would be no refreshingly cool splendor till we had someone come check it out.
Our neighbor knew a guy who knew a guy who did AC work on the side. Always looking to save a few bucks, we called the “mystery guy” named Dennis who said he wouldn’t be available for a couple days.
“No prob,” we replied. “We’ll see you then!”
What followed was a stretch of near 90 degree temps with thick Ohio humidity you could serve with a ladle.
Yes, I was fried. My MS-infused nerve endings were popping like bacon on a hot skillet. My dogged feet dragged ruts in the carpet going room-to-room in search of a cool spot.
I baked. It would have been cooler in the oven had I turned on the exhaust fan.
I rejoiced as word came that Dennis, my new-found AC savior, would be here the following afternoon. That night was another restless slumber. I actually had to be peeled from the sheets getting up in the morning.
My legs were weak. My arms were numb. I was Betty Spaghetti’s older brother, Bobby.
Put me in a strainer ‘cuz I was 180 lbs of cooked pasta.
Dennis knocked on the door promptly at 3:30. After I finished kissing his scuffed boots, he and his tools commenced to work on our defunct air conditioning.
A mere five minutes later the behemoth box was humming with life. Seems it had been turned off outside and all Dennis had to do was flip a switch. (We had new siding installed last fall so the siding guy disconnected the AC and simply forgot to turn it back on.)
Cool air returned — and slowly, so did feeling in my body.
Thanks to Dennis I have returned to my usual summer haunt. Hogging all the air. A glutton for comfort, I am.
I tell you this tale because you already know the tricks of keeping cool when temps flare. So I’ll just remind you to be careful. Work slow and steady. And enjoy the too too hot summer wisely.
*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com
Last summer the heat outside kicked my butt. I tried all the normal tricks to remain cool and keep my core body temperature down, but no matter what I did my body grew weaker as the summer progressed. I’m not looking forward to the coming hotter days.
It’s crazy to get exhausted just going to the mailbox. That short of a trip and I’m ready for a nap. I have learned to take things as they come and listen to my body even though it’s not always easy to do. It can actually get quite frustrating.
Sometimes I will have my heart set on going somewhere then not have the energy to go and have to cancel plans. Or I have something that needs to get done but it doesn’t get done for days and days and days just because I can’t muster up the strength to do it. If I could, I would hire a maid to clean for me, a cook to make my meals and a chauffeur to take me places. Now that would be the life! Include getting rid of MS into the mix and that would be my dream come true.
But as it is right now, I’m the one that has to do everything. It’s up to me to take care of the house, do the laundry, prepare my meals, bathe, vacuum, pay the bills, make the bed, put gas in the van, clean up my messes, and live with MS.
Between the coming heat and sweltering humidity, I crumble. Some of my tips of how to survive the hot days may seem a bit odd, but they work for me.
I have an ice vest I receive many years ago but it’s too heavy to wear so I have created a lighter weighted version of the vest and wear it to bed. That’s the time of day I really need help with the heat the most. If I can’t get comfortable at night, I’m miserable. The ice will stay cold for about two and a half hours and then I switch out the ice with a second set of ice packs.
I keep plenty of frozen water bottles that I take out of the freezer an hour before bed so they have time to thaw out and I can sip on them. I also will use my ninja blender to crush ice and make soft snow cones to enjoy. They actually cool me down quite a bit.
I still do yard work which can be killer in the heat but having access to water that you can spray as needed helps. I have been known for getting drenched each trip on my riding mower to the back yard.
So what do I do when the heat overwhelms me and I can’t do what I need to do? I do what I can and leave the rest for another day. I have had to learn to be okay with not getting everything done that I want or even need done.
Taking care of me is way more important these days than taking out the trash or getting the mail. My well-being is more important than attending a ballgame in 100 degree weather and my health is of greater importance than buying a birthday gift for the lady down the street.
Be good to yourself. Take care of you. No one else is going to do it for you. It’s okay to cancel plans, veg on the couch, sleep late, and most importantly to need help. That’s not being stubborn or selfish. That just what you have to do to keep going.
Keep going, doing, being, until you can’t any longer. I have never met an MSer that wasn’t a strong and powerful fighter even on their weakest days. We push through some of the toughest battles. Things that other people never see or even know about because we simply keep going. MSers are an amazing example of strength, persistence and determination. I’m so very proud of you and cheering you on today.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. 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.
Summer’s here, it’s getting hot, and it’s getting really tough to stay cool.
With multiple sclerosis, many people have heat sensitivity that triggers MS symptoms. For me, it brings on fatigue, and my body goes numb. It usually starts with my feet and legs. Without intervention, the numbness can spread to my full body from the neck down. It’s not disease progression, but it can be frustrating and depressing. In my youth I basked in and relished extreme heat. Now it makes me anxious for the possible consequences.
Suggestions abound for ways to stay cool in the summer heat. Stay hydrated, wear cooling aids, stay in the shade, have air conditioning, travel somewhere cooler, be rich. The last one is said in jest, but there are so many barriers to remaining cool when the weather heats up for more than a day or two. I suspect the barriers are easier to remove when wealthy.
The preferred options are also very individual. Environment, health, finances and area of control differ drastically for each person. Cool showers work for me, but they might not be possible when needed. They can also be difficult for those with mobility issues. My go-to method is to use my medication cold packs as cooling aids. Wrapped in a towel, they cool me down quickly when placed on my belly or the back of my neck.
I don’t have air conditioning in my home or at work, so I plan ahead for hot days. My office is located in an historic building of stone and brick construction without air conditioning. We fondly refer to our office as a pizza oven when the brick warms up and our offices remain excessively warm for days. In my area, it’s the start of a heat wave. It was 80 degrees at my desk today, and the humidity made it feel hotter.
I drink cold water, use the ceiling fans, open the windows for air flow, and direct a small fan above my desk at my torso. Films coating the windows and blinds adjusted help diffuse the sun’s rays from directly warming the office. None of this keeps the office cool, but it makes it a little more bearable.
It’s a challenge getting work done and looking professional while trying not to overheat. Sportswear is good for the technical construction and breathable fabric designed to keep athletes comfortable, but it can get expensive and isn’t always appropriate for the office. Sun dresses, skirts, breezy style tops and other loose clothing that don’t cling to sweating skin help. Often being comfortable can be achieved, yet we resist in an effort to be socially acceptable and presentable. The business world generally encourages discomfort at the expense of good self-care. I want to give myself and others permission to do whatever it takes to stay as cool and comfortable as possible in hot weather.
I try to remember the conditions where I am are not the same everywhere, and they’re sometimes drastically different at a nearby location. It’s interesting to me how different it is for the offices across the hall located on the shady side of the building. They’re often cool even on very hot days. I need to remember this. Where might it be cooler? Go there for a moment. Even a quick break could help.
Note to self: Sometimes it’s not about being able to do something to relieve the discomfort, it’s about giving myself permission to do what it takes to be comfortable.
I live near the beach, and yesterday I walked along the shore barefoot in the water. It felt so decadent that I couldn’t believe I’d resisted the idea of taking off my shoes and socks to get in. I knew the saltwater would be really cold, and it was. I hadn’t considered how refreshing it would be after the initial shock. It cooled me off, and the unplanned stroll was heaven.
Lesson noted: Sometimes the initial discomfort is necessary to get to comfortable conditions.
Please do what you need to do to care for yourself and those around you, especially in heat waves and situations where certain behavior is expected. You might just inspire someone else to give themselves the permission they need.
*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. 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/