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Thrive at Home This Holiday Season with MS

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Have you ever had this happen… a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with multiple sclerosis… which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping… doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow. I’ve felt it myself at times. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I know it’s hard, but try and find something good in the chaos. When you have to stay home, choose to have your own party in your PJ’s. Even if it’s a party all by yourself, have it anyway. Don’t let the fact that you can’t go somewhere get you down.

I have a party box filled with puzzles, colored pencils, coloring books, games, legos…all those creative things I played with as a kid. I pull it out and have fun. Strangely, it’s quite therapeutic and helps me to pass the time without turning the evening into a pity party. I like my PJ parties so much better.

So the next time you have to decline a friends invite, put on some festive PJ’s, make some hot cocoa and pull out your party box. I’ve grown to love these solo PJ parties. My box saved me from many a pity-party spirals, and now I’m off to mold a Play-Doh alien with googly eyes and spiky hair. Try it — Add scented candles, a favorite playlist, or a journal to doodle in. What’s in your party box? Share below or tag me on X — I can’t wait to hear!

How do you live with MS? You just do it!

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You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, you don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of multiple sclerosis? Where do you go from here once diagnosed? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you make your way through the struggle in your day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, regardless of what complications MS has given you, a life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k trek with their arms raised in victory, but what about those who can’t walk? Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down. For that I’m enormously thankful. But when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight so hard every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

Dealing with negative people

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Everything in the world is filled with so much negativity it’s getting harder and harder to keep a positive focus. Is that even possible any more? I happen to believe it is possible and being positive is doable.

Dealing with negative people can be tricky, but I’ve got a few strategies that might help. First, I try to stay calm and not let their vibe drag me down—easier said than done, I know. Sometimes, I’ll listen to what they’re saying, not to argue, but just to get where they’re coming from. A little empathy can go a long way, even if it’s just a nod or a “yeah, that sounds rough.”

Sometimes, negativity stems from personal struggles or a deeply ingrained habit. Understanding this doesn’t excuse their behavior but can provide context. They might be going through personal issues like stress, health problems, depression, or anxiety; have a pessimistic outlook due to past experiences or upbringing; or even lack self-awareness about how their behavior affects others.

Then there’s the media and social platforms—they thrive on drama. Fear, outrage, and bad news hook us faster than feel-good stories. Algorithms know it, too, so they keep feeding us the heavy stuff. Add in the past few years of pandemics, economic wobbles, political chaos—and it’s like everyone’s got a reason to vent. People also bond over shared complaints; it’s a weird social glue.

Don’t engage in their negativity and do your best to avoid getting pulled into their negative vortex. When it’s too much, I just keep my distance where I can. If their negativity seems to stem from deeper issues like depression or anxiety, gently suggesting professional help could be beneficial. No point in soaking up someone else’s storm if it’s not my weather to handle.

Ensure you take care of your own mental health in the process. Negativity can be contagious, so counteract it with activities that boost your mood, like exercise, reading an encouraging message, singing, or engaging with positive people.

By combining understanding with strategic interaction, you can better manage your exposure to negativity while possibly helping the person see a different perspective over time. Remember, your mental health should always come first, so these strategies are also about protecting your own peace of mind.

What’s your go-to move when you’re stuck with a negativity magnet?

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There is a magnificent, beautiful, wonderful painting in front of you! It is intricate, detailed, a painstaking labor of devotion and love! The colors are like no other, they swim and leap, they trickle and embellish! And yet you choose to fixate your eyes on the small fly which has landed on it! Why do you do such a thing? ― C. JoyBell C.

Living stress less with MS

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I can sit and watch it rain for hours. There’s something therapeutic about it. The steady rhythm and the sound of flowing water is soothing. As a kid I would watch the drops of water on a small section of the car windows and would try to find the fastest raindrop as we drove down the road. I would challenge my brothers and sister to pick one and we would make it a contest. Which drop would move fastest to a specific location. It made traveling fun.

I also like watching fish swimming around in a tank, in a lake or in a bowl. There have been studies on the health benefits of fish watching. I’m not sure if I can say the same for raindrop chasing, but I would imagine it’s the same. Fish watching has been found to relieve stress and anxiety, calm the mind, lower blood pressure, help to reduce the effects of chronic pain, and even enhance a person’s ability to focus…all things that someone living with multiple sclerosis would greatly benefit from.

If your day today is filled with a long list of to-do’s, demands from your boss, needs from your family, piles of work that simply can’t be put off one more day, take a little bit of time to watch some fish. If you don’t have your own fish tank at home, load a video from the internet of a fish tank or even of rain falling that includes soothing sounds.

I actually had a Betta fish named Blueberry once that had an amazing personality. He was a beautiful blue color with a few red stripes in the fins. I loved watching him fan his fins, play hide-n-seek in his tiny cave and swim around the tank as he proudly displayed his colors. Even watching him eat was entertaining. Sometimes he would spit his food out and then go chasing after it to gobble it up. He always gave me a giggle.

Maybe instead of fish, you are more of a dog or cat person. There’s something just as calming about them cuddling up with you as you scratch between their ears and rub their belly. It could be that you prefer caring for horses or maybe even birds, reptiles, or hamsters. It seems all animals have the potential of making great companions, being amazing “friends” and helping in relieving stress.

I would have a zoo if I had the room for it. Does that mean I live a stress free life all the time? No, but it does make life much more enjoyable and entertaining…that’s for sure. And who does’t need some entertainment from time to time is this crazy mixed up world?

This morning, my entertainment was watching an ant trying to lug a broken cracker on top of its head. That was my view as I drank my morning coffee. I’ve even already laughed a few times in the process. Each time the cracker would slip off its head and he would attempt to pick it up again. It seemed more like watching an I Love Lucy episode. Laughter is therapeutic anyway so I’ve already had a good day.

Today I didn’t grieve for my health issues

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How many days do I get up in the morning and say “Maybe my hands will work for me to get dressed without difficulties. Maybe I can get through my morning without a bathroom mishap. Maybe the pain in my body is manageable and doesn’t interfere with my quality of life. Maybe multiple sclerosis will behave and allow me to run some much needed errands.”?

Sometimes feeling lonely overwhelms me. I have sensed a feeling of abandonment more times than I care to admit. Not because of anything in particular, but just because I find it’s not that easy to get some much needed help for everyday events like preparing a meal or cleaning the house.

Recently I have noticed that I get upset easier. I have been in arguments or quarrels for no reason at all. My emotions are just on edge and have a tendency to overwhelm me. I feel like people I used to count on have moved away from my life which in a way is something to be grateful for… but still unnerving. I don’t need complicated people to complicate my already chaotic life.

Today I didn’t grieve for my health issues… I looked at my life and was thankful for my doctor which I will be seeing later in the day hoping it’s a good appointment. I looked out at how hard the wind was blowing and was thankful that I have a roof over my head, heat in the house and food in the cupboard. That I have friends and some family members who love me and contact me just to see how I’m doing.

My back porch has been setup with comfortable seating to enjoy the warmer weather when it comes and it’s been cleaned… the spring cleaning way. It was a much needed job to get done. Family came by unexpectedly and helped me out. That was a much appreciated thing to have happen. How can I show my gratitude? I feel like just saying thank you to everyone in my life isn’t enough gratitude, but it is.

I can do acts of kindness. I can perhaps slip a card of encouragement to someone secretly that I know can use it. Often, many people I see just want to talk to someone. That doesn’t cost a penny. For the most part, my time is free to give. Maybe some people won’t understand how special those kinds of times are, but I do and will still cherish them.

Today, ask yourself what you have done lately to show your gratitude for the day? Sometimes all that’s needed is our attention and looking around just to notice what’s actually there. There’s always something. What are you grateful for?