MS Awareness

By Lauren Kovacs

Guess what? Awareness goes both ways.

Yet another thing that MS folks deal with is awareness. You have to be aware of your own limits and make others aware, too. Who doesn’t want people to see MS? Sadly, awareness has to be spoon fed to others. Little bits. The taste is bitter so, go slow.

If you overdo the information, glazed eyeballs are the result. Some choking may also happen. Strained MS information spit back at us is the last thing we need. Like feeding a baby strained peas, take it slow. Be patient. Little bites.

I see MS awareness as conjoined twins when it comes to others. I give others the scientific/medical side and I always couple it with a simple explanation. MS is not easy for anyone to understand. Analogies help when explaining a symptom to others.

Yes, there are times I lied and said it was from my college cheerleading days. I tell them it was a neck injury from falling off a pyramid. What? I was, in fact, a college cheerleader and I did fall off a pyramid. Not a total lie. Plus it is way more glamorous and interesting. The people I have told this to were usually repairmen that I will never see again.

Lying is wrong, I know. Everyone likes a bit of drama though. I now say it is MS and let them digest it and ask questions, if they want. Boring. Most people need time to digest MS information. Awareness is part of that digestion. Frustration at others not grasping or understanding it is the greased pig of MS.

Heat and fatigue plague most of us. I never keep that to myself. This is when you get to play detective too. If you think the person can take a bigger bite, share. If not, back off a bit. You have to kind of see what the person can handle.

Know your own limits too. We are all super heroes, but even super heroes have limits. The Flash can only run so fast, for example. Super heroes know their limits and have enough humility to know when to stop.

It has gotten easier, as my MS shows now. People know I can’t regulate my temperature.  The ice wraps and frozen drinks give it away. Maybe me looking like a wet dishrag was a clue. I make the drowned rat style look good.

Explaining neurological fatigue is not easy. We don’t really have chronic fatigue, but it is chronic. It never goes away and sleep doesn’t mean energy, ever. It helps that my sons and husband see when I begin to wilt. Around others I say it politely and do what I got to do. I exit the stage and if people boo and hiss, I let them. Take care of YOU. Self-awareness is important too.

Awareness is tough, but be aware that you are the one dealing with MS on a personal level. Fatigue and heat ruin YOUR fun. We are the ones who deal with what happens when we get too tired and/or hot.

Years ago, I once got too hot and lost vision in both eyes for about 30 minutes. My life stopped. Fear tore me apart. No one else knew and life didn’t stop for them. It was a very long 30 minutes for me.

We have roadblocks and we have to find a way around them. Even if people had known, would it have made my eyesight come back faster?  If I had avoided getting hot, my sight would have been fine. Learn to be on top of your own awareness.  Awareness goes both ways.

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What’s New?

By Lauren Kovacs

I know this is very hard. Fear is paralyzing, even without MS.  You wonder why you didn’t wear your brown pants when trying something new. I am not suggesting Bungee jumping in your wheelchair or am I?

Branch out a bit.  I skied the Swiss Alps, was a gymnast, a college cheerleader and hiked the Highlands of Scotland.  Physical freedom may be way out of reach now for most of us now.  Wheelchair wheels don’t do well in mud and sheep poop.  Do something small instead.  Be adventurous.  My adventurous thing is leaving the house wearing regular jeans.

Try something new to you.  People may not be impressed that you can do something, but you might.  When I rode horses, for therapy, they had me ride backwards to work other muscles.  I hated it and was terrified.  But, not many people have seen the southbound end of a horse while it walked around the ring. Try.  You may surprise yourself.

I have terrible hand coordination. I got a Knifty Knitter hoop and made hats.  Takes me days, but when I am done I know I accomplished something.  Others may not appreciate your hard work, but you know.  Maybe you need to see and touch your accomplishments.

Pick a new thing and try it.  I tried painting with my non-dominant hand. I used to be a great painter and it was so bad my kids could not even tell what it was. I no longer paint, but I tried it.

Maybe try a new thing when no one is around. I tried painting when the kids were at school. It was an epic fail, but the important thing is to try.  It was a horse in a field and my kids thought it was a rock and I had to work hard to even get them to guess.

Try things that are completely new. Painting with my non-dominant hand was a disaster.  I saw the mess on paper, when I was trying something I used to be good at. It just pointed out how MS has taken everything.  Don’t set yourself up for disappointment.

Now, if an opportunity involves something very new, I try it.  Ok, bungee jumping will never happen.  I stay away from what I used to be able to do.  Set yourself up for success.  Trying what you used to do might cause failure.  Trying something totally new might be your thing.

You may find you are awesome at fly-fishing, for example.  What you used to shy away from or dismiss could be a great activity.  Maybe you can pick out great lures for fly-fishing. Playing guitar with your toes might be for you.

Gender norms might need to be crossed.  I know a guy who took up knitting.  Be brave.  It is like when my mom made me eat Lima beans, when I was a kid.  I still hate Lima beans.  Don’t knock it until you try it.  Feel free to knock it out, if it is not for you.

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Trying New Things: The Rewards Usually Outweigh the Risk

By Stacie Prada

I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest.  My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be.

It’s reasonable to limit activities when you have health issues.  Addressing nutrition, rest, fitness and overall well-being is a full-time job.  Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen.

Doing things outside of my routine usually involves budgeting my energy leading up to and following the event.  The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision.  It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health.  They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves.

I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim.  Feeling like that is depressing.  Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment.  It adds to a sense of strength and empowerment.  This is one area of life where I think one can help offset the other.  It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before.

It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot.  I bought it and planned going with a friend.  Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time.  I went on to do the trapeze class, love it, and go back many times.  I tried it, succeeded, and built up my physical confidence.

Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment.  There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me.  Picture this:  I enter a hotel ballroom where only two tables have people sitting at them.  One table with ten place-settings is full. The other has eight twenty-year-old Japanese students.  With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could.  I sat down, and then the other tables filled up around us.  I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English.  I don’t speak any Japanese.  I conversed with the one young man about professional topics to find some commonality.  While I did, it was clear the rest of the men were commenting about me and laughing at me.  They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table.  My guess is the time at that table was only about 30 minutes, but it felt like hours.

Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster.  But I hold it up as a benchmark experience.  It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction.  It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be.

This experience helped me build my social and emotional confidence.  Trying trapeze helped me with my physical confidence.  Both of them reduce the chance that someday I’ll have regrets for what I didn’t try.  Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward.  That reward may be for accomplishing it well, and it may be for just enduring and surviving.  Either way, we win.

*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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Let Today Be the Start of Something New

By Penelope Conway

I woke up this morning yet again to the reality of multiple sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day with Bill Murray. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.

I don’t know when it started for me, but day after day my life became a blend of naps, computer screens, brain fog moments and doctor appointments. Trying something new just didn’t seem to fit into the mix of things.

From the outside everything in my world looked fine. I had a roof over my head, food in my pantry, an internet connection to get online with and friends both near and far, but what couldn’t be seen were the limitations I began having because of MS and the stresses that came with those limitations.

I failed at everything I tried to do. I had a hard time clipping my own fingernails, couldn’t drive safely even to the corner store, ran into walls that weren’t even in my way, tripped on air, forgot appointments and dropped everything I got my hands on. Talk about depressing…ugh! No matter how hard I tried, I couldn’t find the stop button for the out of control spinning chaos that surrounded me.

If someone approached me with even the thought of getting out and doing something new, at that time in my life I had become so defeated that I couldn’t hear what they were saying and would lash out at them for even suggesting such a thing. All I could see were the things I couldn’t do. Those were not some of my proudest moments, but great friends help you get through the rough patches in life, and thankfully I have great friends.

I call them my Push Coaches. They pushed me to see past my limitations and helped me to see that there is always more than one way to doing something. I discovered that the only real limitations I had were the ones I created for myself and realized that trying new things actually made me happier in life.

As weird as it may sound, stepping out from my daily routine brought excitement to my day and became a welcomed change of pace to the day-in and day-out rut I had gotten myself into.

Sure, my legs may not work well anymore, my hands may fumble with everything I get a hold of, and vertigo may keep me from seeing straight, but those things should never stop me from trying something new. I was determined to try something new at least once a day.

At first I did simple things like taking a different route to the grocery store or wearing crazy colored socks. Those simple changes to my day surprisingly made me smile more. After a short period of time I found myself seeking out other things to try like community art classes and volunteering at the local hospital. I began looking forward to the changes in my day.

It takes a lot of courage to get out there and do something new. If I could be your Push Coach today, I would encourage you to step out from your daily routine and try something new. Change your hair color, try a new tea flavor, join a book of the month club, enroll in cooking classes…just get out there and try something new.

Don’t let MS keep you from having new and exciting adventures in life. Besides, you just might surprise yourself and find a hidden talent you didn’t even know existed.

*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.

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Prioritizing Needs = You

By Lauren Kovacs

You would think after 20 plus years of MS and three kids I would be good at prioritizing.  I struggle with this monster to this day.  It is not always easy to slay this dragon.  It is relentless and seems to have many lives.

Mentally or on my phone, I try and note my path. I try and tackle one, maybe two, things a day.  Try being the optimal word.  I often plan the week out on Sunday evenings.

It can be hard, too, when prioritizing has a roadblock called “help”.  Many of us rely on help from others.  We end up waiting patiently, all while cooking in stress and anxiety.

I know beggars can’t be choosers.  As if needing help for simple things is not hard enough, we must learn to function on someone else’s schedule and timeline.  Their priorities never click with yours.

Make “you” the priority.  For example, we go to 10am mass.  It is kind of far and my sons are alter servers.  I make sure they don’t smell and are presentable, and then they help me.  Even with all older boys getting out the door is hard.  Being a wrinkled mess, nuclear breath, and non-matching clothes don’t bother them apparently.  Yet, my shoes are tied and I am always ready.

I get up at 6:30am and take my medication, eat, get dressed, do my eyeliner several times, hair only goes into ponytail or down and do any other leaving the house stuff.  I save the things I can’t do for later.  Some days I am completely ready on my own and others I am not.

Yes, it drives me insane, after 20 minutes I can’t tie my shoes.  I may have irritated my ears trying to put earrings on, but at least my eyeliner is straight.  Some days I can’t button my blouse or fix my collar.

Part of prioritizing is letting go.  I only wear silver earrings without those little backs.  They may not be super matchy-matchy to my outfit, but I have earrings on.  If they were there from days before, no biggy.

Trying to go with the flow is torture for many of us.  Most MS folks are planners.  We usually have plan B, C or maybe even plan E. “E” is usually the “enough is enough” plan.

Is it essential to survival that I have different earring on?  Am I at least modest in my dress to go to church?  I hate dresses, but I make sure my pants look nice.  Are my pants easy up and down?  How easily can I get to the bathroom?  The wheelchair does not fit in there, but the walker will.  Are my bowels and bladder empty?

Priorities change like our MS does. Factor in everything.  Is it a huge deal that you had to wear sneakers?  Yes, the black boots would have looked much better. The dress pants would look good, but they have a button and zipper.  Are my fingers working today?  Will I be too tired?

Overthinking might, in some cases, be helpful.  Choose the path with less stress.  Ask yourself what you can do by yourself, if you built in extra time. If I just can’t button my shirt, I wear one without buttons or ask for help, if time permits.

Prioritizing can be exhausting.  Even making phone calls is tough, when your speech is garbled.  I worry someone will report me because I sound drunk.  It gets worse as the day progresses.

I try and keep appointments for late morning.  My day is prioritizing.  Everything comes before my afternoon nap. Once I nap I wind down the day.  My descent into more MS speeds up after lunch.

Making “you” important.  It is a balance to do this on top of family needs.  Don’t brush your wants and needs aside.  I may want my hair pulled half back.  Find a way to meet that want.  I don’t mind having two hairstyles, but there are times I want something different.

Putting make up on is very hard. My eyeballs are used to being stabbed with mascara wands. Baby wipes are great for removing eyeliner that left a wiggly path.  Don’t give up on you because MS is in that path.

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Between You and I

By Doug Ankerman

Time we had a chat. A good ‘ol face to face.

You know we have a few things in common, right?

First, we both have multiple sclerosis. Me, since 1996. An MS diagnosis can be difficult to accept but over time you realize you can’t change the past so you must work to positively improve the future.

Which leads me to the second thing we have in common…muscles.

Did you know we have around 640 muscles in our bodies? That’s not 640 between us, you have 640 muscles and I have 640 muscles. (Although looking at me one might think I left a few hundred muscles in my other shirt!)

And those muscles…your muscles, my muscles, our muscles…want to move!  They want to be stretched, strengthened, and energized.

Meanwhile, multiple sclerosis wants to painfully wretch, tighten, and shorten your muscles till they cry “Uncle.”

So we must have a plan to keep that from happening. We must prioritize our needs to keep our bodies strong, loose, and resilient.

We must make our health the number-one, numero-uno priority. We must give our body what it needs and craves. Give it movement. As much as you can. Reach. Reach further. Now to the other side. Twist. Turn. Then do it again. Get up. Walk if you can. Extend your arms. Move your legs. Wiggle your feet. Do it standing or sitting – it doesn’t matter how because anything counts. Every little movement helps. It doesn’t have to be intense. And you don’t need a gym membership. You just need to keep moving those muscles. All 640 of them. The more your muscles move – the better they move.

MS is a bugger that doesn’t give up. So neither must you.

Make time for you and your muscles. Two minute here, ten minutes there. Move during the commercials while watching television (You never like them anyway!).

Make it your first priority. You will feel better. Feel positive. Muscles will loosen and let the energy flow throughout the body.

Remember, movement means mobility.

I’m so glad we had a chance to talk. Now we know what we need to do. So go ahead. Get started. Get going and move!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

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I Need To Up My Game: Prioritizing Needs

By Stacie Prada

When I feel great, there’s no need to change what I’m doing.  Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue.

We subconsciously prioritize and adjust our behavior to meet our needs all the time.  For me the demand to put effort into prioritizing needs comes when I don’t feel well.  I’m stressed, something hurts, or some part of me isn’t working as well as usual.  It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.

This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort.  I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much.  I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks before the side effects would mellow out.  I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now.  I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain.  She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.

Each step of the way, I had to make my health a priority while still doing everything else my life requires.  While under her care, I dutifully did all the exercises she prescribed.  It was tough doing it all, and it wasn’t something that I could sustain.

When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now.  I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there.  This took being honest with myself and with her.  I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be.

I already have a minimum fitness routine I do every day and have been doing for years.  Seriously, I missed eight days two years ago and none last year.  I thought I was doing great, but it wasn’t enough to protect me from having problems develop.  So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.

I’m not doing everything she gave me, but I’ll get there.  And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences.

It feels like slow change, but it’s not no change.  I’m in it for the long haul and doing what I can as I can.

*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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A Multiple Sclerosis Night Before the Holidays

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.

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Shopping at Chair Level

By Doug Ankerman

The holiday season means it is time to hunker down into my wheelchair and face the Christmas hustle and bustle at seated-eye level.

Yes, Christmas shopping is all the merrier from the seated position. (Now I know why Santa is always sitting down!)

So with my list in-hand, let’s roll to the mall and purchase our “gifts of joy”……because nothing says “you are special to me” MORE than a shiatsu massaging cushion from Bed, Bath & Beyond.

Come on in

My first hurdle is just getting into the dang store!

This entrance at Sears is clearly marked “handicap accessible,” yet, there is no button to open the door. Forget the wheelchair, I quickly realize my “handicap” is trying to get into the place!

Usually, another courteous shopper will be nearby to help hold the door for you…..but this is Sears. I’ve seen ghost towns with more foot traffic!

Seasonal spirit

I’ve noticed store clerks and other shoppers are extremely helpful when you are in a wheelchair. They go out of their way to assist you. I figure, they feel bad because this guy has wheels for feet. That’s why I am always “over-the-top” positive when in my chair as I try to dispel the “woe is me” wheelchair image.

The squeeze is on

Shopping in a wheelchair can be tough battling crowds and parking — but the real challenge is in the aisles.

The squeeze is on as you try to fit between the displays for house slippers, glittery turtlenecks and NutriBullets.

Here’s an aisle that would be a tight fit for an anorexic fashion model — let alone a wheelchair!

Going through there gave me greater appreciation of  birth.

Caution: Stay Back

Finally, from a seated position, you tend to get an in-your-face view of everyone’s backside.

Gluteus I-Maximus.  I’ve seen butt cracks that make the San Andreas’ fault seem like a fine line.

Hip Huggers scream “uncle” in mercy.  I saw a jeans tag I gotta believe was triple digits!   If denim was an animal — the species would be extinct!

And from my box seat, it is not only “seeing is believing”…no, you see, I get to enjoy the “sounds and smells” of the season as well, if you will.  Let me put it this way, no one claims to eat the holiday fruitcake, but someone is — and I am caught in the cloudy, odoriferous haze that follows.

Through crowds, long lines, charge cards and gift receipts…wheelchairs or not, we muddle through to finish our holiday shopping with moments to spare.  Just enough time to catch our breath before we gather with family & friends — AND gear-up for our December 26th visit to the stores to return our house slippers, glittery turtlenecks and NutriBullet, right?  May you have a tremendous Christmas holiday!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

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Balance and Moderation

By Lauren Kovacs

This is a Grinch every MS person faces this time of year. Even those who chose not to celebrate will be affected in some way. Even if you don’t bring that creepy “Elf of the Shelf” into your home, the season seeps into your life. Like glitter, it sticks to everything.

I have had to hand the holiday reins over to my family for most things Christmas. I did what I could. Each year, I find something else I cannot do. I am thankful my husband was always the cook and party planner guy.

I gave up helping decorate the tree or the house. I direct most of that now and point. Taking it down last year was very hard, especially telling the boys to wrap up certain ornaments for proper storage. (PS even fake candles melt in the attic no matter how well you store them.)

I do all my shopping online. I order online and if it arrives early and unwrapped, so be it. I let people know something is coming and to bag or wrap it. I can only do so much. The old saying, “it’s the thought.”

I keep a list of people and record what I bought and how much I spent. I can’t remember everything. I can budget and keep track of gifts all together on one list. I have a very big family. I can’t hang an ornament, but I can do the shopping part. That is huge.

Gift buying, angel trees, charity and such require a lot of planning. It can be a lot of work.  Most MS folks are great at planning. Embrace what you are good at.

Not being able to stand up might make you able to decorate the tree on the bottom half. Just be sure there are no glass items down there. Maybe you can still make fabulous wreaths. Maybe give those as gifts. Take a talent and latch on. Even small tasks can bring you joy during the holidays. Embrace whatever you can. Cookie taste tester is important.

Rest/nap and keep your schedule, too. It can be tempting to skip that nap or stay late at a party. Spiced eggnog is delicious, but is it worth it? Trying to walk like The Nutcracker might not be fun. Pick your battles.

We all have to live and be merry, however. Moderation is key here! Those of us that don’t eat gluten have to weigh the consequences of eating that one cookie. Is it really gonna kill you to have one cookie in celebration? One, not three or ten. I have been known as a cookie monster. I get it.

If I have been good about not eating gluten all week and I attend a party with cookies, yes, I will skip the seaweed smoothie and eat the cookie instead. Come on, live a little. I want to enjoy the holidays and if eating one piece of fudge is more fun than liver and onions, bring on the fudge, but self-control is also key.

MS folks have to balance a great deal at the holidays. Don’t deny yourself a small treat. Think of it as a “to me from me.” Our battle is long and small prizes now and then are ok.  Don’t be a glutton, but one small candy cane is not going to break the MS bank.

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