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What people with MS would love to hear

It’s heartbreaking to hear from a friend or loved one that they have been diagnosed with multiple sclerosis. If upon learning the news you go through a range of emotions—from shock to sadness to anger to fear—well, then just imagine what your friend must be feeling themselves.

It’s only natural when a loved one is going through a health struggle like MS, we want to support them in any way possible. We want to be a physical presence in their life to assist them, but still need to respect their personal boundaries as they navigate a major change in their life. Sometimes, the best thing we can do is send a thoughtful note with some comforting words to let them know that we care.

But even then, it can often be difficult to find the right words. I’ve put together a list of items that someone living with MS would love to hear from a friend or loved one…

  1. “I’m here for you”

    Show up for your loved one and remain by their side as they go through the crazy MS process. And if you say these words, make sure you mean them, and support them through thick and thin.

  2. “Thinking of you”

    I’m thinking and praying for you… and I really mean it!

    Hearing that your wellbeing is on someone’s mind can be a great comfort, and the act of praying may be very peaceful for you as well. If you or your loved one aren’t religious, it’s still helpful to hear someone is sending you good vibes daily.

  3. “Let’s have some fun”

    Tell a Joke… after all, it’s been said that laughter is the best medicine. Ask your friend for suggestions on renting a movie or watching a tv series that might be uplifting and humorous.

  4. “I care about you”

    I don’t know what to say, but I care about you and I’m here for you if you need to talk or just cry.

    Listening is sometimes the best thing you can do for someone with MS. Silence is actually ok. Sometimes those empty spaces allow both of you to collect your thoughts and emotions. Be sure to listen without judgment.

  5. “You are so beautiful”

    I’ve set up an appointment with the hairdresser to give you a new haircut and manicure.

    Feeling confident when dealing with physical challenges can be difficult at first. No matter what physical symptoms your loved one is experiencing, this is an opportunity for you to make sure their inner and outer beauty is recognized by letting them know that they are beautiful… even when in PJs and having messy hair.

  6. “What day works for a visit?”

    Call and ask when a good time to visit might be. Be mindful when you are visiting that people with MS can tire easily and several short visits might be best.

  7. “Let me help you with…”

    Ask if they need help with any particular tasks such as:
    Grocery shopping
    Cleaning the house
    Making a meal
    Laundry
    Picking up prescriptions

    Finding the time and energy to run errands can be a challenge. They may feel ashamed in asking for help with tasks even though it is needed. Show that you are sincere in your offer to help by making suggestions.

  8. “I love you”

    Send a note with a personal gift such as books, movies, word games, small mementos, or special personal care products. When nothing else feels right, these three simple, powerful words can mean the world. They might be just the thing your loved one needs to push through the day.

  9. “There are so many things to love about you”

    MS has a way of feeling all-encompassing. Those affected may feel like their identity revolves around being a patient. That is simply not true. Your loved one is so much more than someone who has MS. They could be a dog-lover, artist, parent… Help them focus on all their amazing traits that have nothing to do with their illness.

  10. “How are you doing?”

    You can be there for your loved one by asking them how they’re doing not just physically, but emotionally as well. Don’t be afraid to ask about their mental health. Sometimes physical symptoms are only one part of the puzzle when it comes to MS.

Memory, forgetfulness and multiple sclerosis

I woke up this morning to my pillow on the floor in the middle of the room. I’m not sure how that happened. I would have loved to have seen that pillow fight. It must have been a doozy…”take that – WHACK – and that – POW.”

I think I am closer to discovering why I’m always tired. It must be all the parties I’m having in the middle of the night with all the toys, dolls and stuffed animals in the house. We must have pillow fights too. I think they are the ones zapping my memory. This way I won’t be able to remember anything when I wake up.

Last night, though, they must have forgotten to clean up some of the evidence by leaving a pillow on the floor. I wonder if they are the ones that drink my coffee too. I will make a nice, hot, perfect cup of coffee and the next thing I know…the cup is empty and I’m sure I didn’t drink it. I’m absolutely positive of it.

I’ve had a few other things disappear too: my favorite sweater, my car keys, my cell phone, towels, and the TV remote. The other day I even lost the eggs a friend brought me. He had a dozen eggs for me since his hens are laying now. When he left, I couldn’t find them. What? How did I do that? I had a few minutes of egg hunting but I found them on my entryway table. I don’t remember putting them there.

Just the other day I was taking a shower, washed my hair but when I got out of the shower I had a head full of bubbles. How did I wash my hair and forget to rinse myself off? That happens a lot for me. Either I wet my hair and forget to wash it or have the suds still in and forget to rinse before I shut the water off. I do all my memory tricks to try and remember but I seem to fail at it most of the time. Sometime I even forget to brush my teeth while I’m in the shower even though the toothbrush is right in font of me. Ugh!

I was writing down a list of things I needed at the store yesterday. I had the list half written, got distracted and went into the bedroom to get my shoes but when I returned my pen was gone. Poof. It just disappeared. I had to get another pen just to finish my list. I still have no idea where that pen went but if I ever go shopping without a list in hand, things don’t go very well for me. I NEVER remember what I’m there to get and always return home having forgotten why I actually went there in the first place.

I think a lot of my memory problems are due to my lack of sleep. I wake up exhausted and go to bed exhausted. I know I’m getting closer to solving my memory problems and forgetfulness. I will let you know when I find out what is going on. I would love to have a few hours of real rest to get my brain a bit more organized.

Now, where did my coffee go? It was right here beside me. Seriously, it was. I’m not making this up. It must have gotten sucked into a black hole. I think I may be stuck in some weird space-time continuum. Maybe I’ll be the one to disappear next? Ahhhhhhhhhhh

A sleep deprived life

My body has a problem with sleep. Either I have an inability to fall asleep even though my body is screaming for a much needed time of rest or I fall asleep at the drop of a hat without warning. Seems contradictory doesn’t it?

I’ve been known to suddenly fall asleep when I have company over and we are in the middle of a great conversation. It can be 10 minutes into the time together, my eyes wide open and I wake up without knowledge of what happened. It’s not because the topic was boring, just my body had given up responding and snoring seemed to be the best option. I call those times sleep attacks. It’s as if I’m sleeping with my eyes open.

But then there are times when I find it difficult to fall asleep and stay asleep. That’s the insomnia part of my day. I can wake up in the morning not feeling rested no matter how much time I spent in bed. No amount of added sleep seems to be helpful.

In life today, it’s becoming harder and harder to calm the mind. We are over-stimulated and overworked, and we find less time to do the things we enjoy because of the things we have to do.

I know the feeling of exhaustion that goes deep down into your soul. It’s awful. Having experienced it yourself, your view of sleep will never be the same again. When sleep comes, it will bring with it waves of gratitude because you know how rare it is. Don’t be too proud to not talk to your doctor about it. There are some drugs that help along with some supplements. Each person will respond differently so don’t be discouraged when you find that nothing works for you.

For me, extra doses of melatonin doesn’t work neither do other sleep aids. I’ve tried them all. I seem to be lucky if I get 3 hours of sleep at night before my brain kicks into overdrive and won’t shut up.

I think my bedroom needs to be set up in my old college physics class. Nothing put my to sleep faster. How I passed the class I will never know. I have no idea what life lesson I learned spending time there.

For now, cling to hope that restful sleep will come. Be gentle with yourself and encouraged. This too shall pass. Your body just needs time to catch up.

If you feel like you’re just surviving, that is OK. You are doing enough and I have no doubt you are doing a great job at it. Know that you are not alone.

It will take you by surprise but suddenly life won’t seem like such a blur. I still wake up with a song in my heart grateful of the life I have whether sleep deprived or not. Take heart sleep is coming.

 

I’m Raising $500 for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give this blog further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed reading my blog. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS.

Show your support by going to this link

 

Multiple Sclerosis has taught me the value of living

Multiple Sclerosis has taught me the value and importance of living…really living. In looking back on my own journey, I have noticed the shift I made from being overly focused on achievements and promotions to building lasting friendships and choosing to enjoy the little things in life. Things like rainy days, moments of quiet, giggles and laughter, sunsets, butterfly kisses, “thinking of you” texts, and of course the much appreciated cup of coffee.

For me, spending time with the people I love, giving of myself to help the less fortunate, and spending some much needed time taking care of myself…those are the things that are important. If anything, MS has given my life a greater purpose because it has opened my eyes to seeing the value of life itself.

The following is the philosophy of Charles Schultz, the creator of the ‘Peanuts’ comic strip. You don’t have to actually answer the questions. Just read them through and you’ll get the point.

1. Name the five wealthiest people in the world.
2. Name the last five Heisman Trophy winners.
3. Name the last five winners of the Miss America.
4. Name ten people who have won the Nobel or Pulitzer Prize.
5. Name the last half dozen Academy Award winners for best actor and actress.
6. Name the last decade’s worth of World Series winners.

How did you do?

The point is that none of us remember the headliners of yesterday. These are no second-rate achievers. They are the best in their fields. But the applause dies. Awards tarnish. Achievements are forgotten. Accolades and certificates are buried with their owners.

Here’s another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special.
5. Think of five people you enjoy spending time with.

Easier?

The lesson: The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.

What do you spend your time on? The key thing is to always remember that no matter what happens in life or how bad things may get, surrounding yourself with people who care and love you is what’s important. That’s what gets you through your day.

The people you remember are the ones that made a personal difference in your life. Strive to be that kind of person for others. You won’t be able to change the world, but if you make a difference in just one person’s life…that’s the world to them.

You’re not a failure when you need help

I was at the grocery store the other day picking up a few items I needed. Because I use a powerchair to get around, I find it easier to shop once a week. This way I can place the hand carry basket in my lap and enjoy my time browsing the aisles for a weeks worth of groceries rather than being loaded down with an entire cart of food.

I enjoy the time I spend looking at all the produce so I can pick out the right bananas I want, or seeing something on sale which sparks an idea for a great meal that I wasn’t planning, or stopping to taste-test a new breakfast waffle. I love that kind of spontaneity and decision making.

I stopped at the refrigerator section to pick up a half-gallon of milk and wouldn’t you know it, the kind I wanted was on the top shelf. I opened the cooler door and positioned my chair close to the shelves while I reached in for a jug. They were too far to reach.

Thankfully, there was a man walking by who saw me and asked if he could help. I pointed to the one I wanted and he graciously pulled it down for me. That kind of thing doesn’t happen often, someone stopping to help, but when it does I always do my best to let the person know how much their kindness was appreciated.

I wish more people were that attentive and kind without having to be asked. I am such an independent person that it’s not always easy for me to ask for help, but when I need it I have come to the place where I am not ashamed or embarrassed to speak up.

At one point I would have struggled and fought with the milk, exhausting myself and more than likely making a mess in the process, all the while leaving myself frustrated, stressed and angry. Deep inside I felt I would be losing the battle with MS if I gave in to my limitations I was experiencing.

But that isn’t true. We all need help…from the healthy to the sick, from the able-bodied to the disabled. You don’t have to prove anything to others or even to yourself by trying to do everything by yourself.

It’s hard, I know, but you need to get to a place where you are okay laying down those things you are trying so desperately to hold on to only because you feel like a failure when asking for help. You aren’t a failure.

Failure isn’t based on what you can or can’t do. Failure is giving up! Asking for help isn’t giving up. Asking for help is allowing others around you the opportunity to step up and be the support you need them to be.

You see, many people don’t know how to help a person with a chronic illness. Since they don’t know what to do, most of the time they do nothing at all. When you speak up to share a need, not only do you lessen the load you are trying desperately to carry but you end up with someone coming along side you to share in your burden.

Don’t wait for people to read your thoughts. If you are waiting for that to happen, you will be waiting a long, long time. Speak up and let your needs be known. That’s the only way your family and friends will truly know how they can help.

Sometimes all I can do is just sit and cry

I remember as a kid taking time to lie in the grass, look up at the sky and discover a world of cloud shaped wonders. Once I saw a bunny eat an elephant, then it pooped out a bear. It seems the impossible can happen with a little bit of imagination and a sky full of clouds. I mean, who ever heard of a bunny eating an elephant before? But I saw it happen right before my very eyes.

Those carefree times don’t happen so much any more. I’m not as prone to pause life to look up at the sky in search of familiar shapes…but I should. I should slow down to enjoy life more and to allow myself to be me. We all should. Do you realize this very moment can never be refunded or returned? It has to be used as is, right now.

That’s not always so easy to do when dealing with a chronic illness. Especially when the challenges facing you seem bigger than life itself. The spasticity in my legs and right arm have increased by a gazillion times over the past month. I am finding it harder and harder to move my right leg altogether. And the pain that accompanies the muscle tightness is killer. Like scream-as-loud-as-you-can-because-it-hurts pain.

Sometimes all I can do is sit and cry. So do you know what I do? I sit and cry. That’s right. I have no secret remedy for how to face the pain graciously. But I do believe in allowing yourself the freedom to express your emotions whether they be tears, laughter or screams.

Yesterday I mowed my lawn on my riding mower but when I finished mowing the grass and it came time to transfer back to my powerchair I had no energy left and crazy pain in my body. My hands had a hard time functioning just to help me move so I sat on the mower and cried. Then when I finally made it inside to get a shower I had a hard time getting undressed. It was like trying to change your swimsuit with nonfunctioning hands after going to the pool. I even wear oversized clothes to help but that doesn’t always work. The tears though, they helped.

I remember one day sitting in my car in the parking lot at the grocery store screaming. I was still able to walk, but by time I had finished shopping and made my way back to the car, I was so weak that all I could do was sit and scream. So I did. I’m sure the shoppers passing by thought I was completely nuts. But I didn’t care. It helped me vent my frustrations. Then I took a deep breath, wiped away the tears and drove home feeling much better.

When facing difficult times, I have found some of my most therapeutic moments have been when I have taken the time to pause and allow myself to simply be. To allow the emotions to spill out for a moment, then take time to notice life like I did as a child. To look around at all the wonder that there truly is in life. To enjoy the tiny little kisses life gives us: the flowers swaying in the wind, the sound of children laughing, the smell of a freshly cut lawn. There’s a pause button in every day, you just have to choose to use it.

No matter what you are facing, whether it be difficulties in your marriage, relationship troubles, problems at work, stress over finances, or simply having an “MS is kicking my butt” kind of day…pause and take time to simply be! Twenty minutes…that’s all you need…just twenty minutes to yourself. Those twenty minutes will be worth the investment. Trust me.

Now I’m off to spend some time curled up in my favorite chair as I sip some coffee and watch the sun come up. It’s a new day filled with new possibilities.

When I started using a wheelchair

It is a guarantee in life that you will make a mistake, and more than one. Anyone that says they have never made a mistake simply isn’t living because that just comes along with life itself. It’s kind of weird to say, but mistakes are good. They teach us and shape the person we become.

Mistakes happen. Ask anyone who has made the mistake of washing a load of light colored clothes with a pair of new bluejeans or locked themselves out of their car while it was still running…yes, I have done both. Those mistakes give us new ways to approach life.

I’ve made the mistake before of thinking I couldn’t use a cane to help me walk because it would draw too much attention to myself. I didn’t want people staring at me. What a mistake that was. I found myself holding onto walls, furniture and people in order to stand. I looked sillier hanging onto those things than I ever would have if I just used a cane, so I broke down, sucked it up and bought a cane. It took some getting used to, but my cane simply became a tool to aid me as I walked. And besides, they come in colors and decorated with cool patterns. You can find a cane to match with just about anything you wear.

I ended up doing the same thing when it came time to use a walker. You would have thought I had learned already, but I went through every emotion imaginable in the process. In my mind I was too young to use a walker and yet again I didn’t want to draw attention to myself. Between my denial and pride, I had an all out war with myself. But just like with the cane, I found that using a walker made life easier, kept me from falling and gave me greater independence. So again, I broke down, sucked it up and got a walker.

It happened again when I transitioned into using a wheelchair. I lived in denial until I saw the benefit it would give me. Now I can’t function without one. My house has been adapted to using one. No more throw rugs to get tangled up in and less clutter in my pathway to cause a traffic jam.

Sadly, it even happened when I began using a shower chair to bathe. I think for me, in my mind, using those things meant I was giving in to MS and allowing it to get the best of me. But through this journey, I have discovered that using something to help me isn’t giving in. Giving in is when your attitude becomes negative and bitter. That’s when you have allowed MS to get the upper hand. As long as I’m alive and breathing…it’s a good day regardless of what aids I use to help me get through my day.

I haven’t given in…I may move slower than I did before and have things to help me along the way that I had never used in the past, but I’m moving forward and not going to stop just because I may look different. Forget how it looks or what people might think. Enjoy the journey. And like someone once told me, “No matter how many mistakes you make or how slow your progress, you’re still way ahead of anyone who isn’t trying.”

Living in a world of brain fog

Sometimes I do some really stupid things without even realizing it, and people who know me don’t tell me either. How rude. Yesterday I was wearing my t-shirt inside out and backwards. I didn’t even feel the slight discomfort from the collar. So at the cookout I was stylish with my own inside-out style.

I came close to putting my underwear on backwards as well but noticed my mistake before I got them on all the way. I’ve been known to put my sweatpants on by putting two legs in the same leg hole. That makes getting dressed confusing and complicated. And people wonder why getting dressed in the morning makes me so tired.

You’d be tired too if your dressing experience was a puzzle that was filled with limits from weak hands and arms… and had to be done while sitting down. Only thing is I don’t always have everything to put on all in one place making my collecting of clothing exhausting.

Then there are the times I don’t sleep well at night even with plenty of quiet, a comfortable bed, sleep meds, and cool room temperatures. Somehow my brain tries to solve all the unsolvable problems that are not really unsolvable. I have solved mashed potato landslides, a pool of qrits quicksand and ready made ice cream snowballs for the holidays. What?!

I have to remind myself that my phone needs to charge overnight. That water goes in the coffee maker in order to properly brew a pot of coffee. That the alarm that just sounded was set for a reason. That my keys really are somewhere…along with my cellphone and sunglasses.

Just yesterday I lost the screwdriver I was using. I checked my hands, my lap, the floor, everything beside me, then oh…there it is. It was under the rag on the bench. My memory just doesn’t work so well anymore. Why do I think I will remember things?

I do tons of brain games to keep my mind active and alert. Sudoku, crossword puzzles, timed digital math and word games, Tetris. They seem to help.

Other brain fog moments are when I’m trying to listen to a conversation and don’t quite get the full context because my mind wanders part way through making things to be a bit muddled. I either need some things to be repeated or I try to fill in the blanks myself. That doesn’t work out quite so well. I fill in the blanks with completely wrong words.

So much to remember.

What do I want?
When do I want it?
What do I want?
Want what?

Naps are my new friend

At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore a little and drool? Unfortunately, it didn’t work out for me last night. I spent the entire time wide awake through a sea of yawns. It was definitely not like a trip to a relaxing spa. That would be amazing.

My night was more like a ride at an amusement park filled with pain, dizziness, breathing difficulties, tossing and turning, muscle spasms, and an overactive brain that just won’t shut up. A night of sleep… I wish! I think I created a new ride last night called The MS Train Wreck that includes bizarre upside-down loops and death-defying tummy-turning drops.

When people try to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change.

Lately those times happen more than I like. Sometimes the thought of having to get myself dressed and looking presentable wears me out. If it’s not messy hair, sweat pants and t-shirt doable, it’s too much work.

Those that love me enough to give me the option to choose and then are okay if my decision is different than what they want or planned for, those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at hyper speeds and it tries its best to force me to keep up with the pace it sets, but MS has given me a slower pace that requires pitstops and naps. Most of the buzzing about that the world wants me to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and naps. Yes, naps are my new friend.

Launching a new you with a new year

It’s hard to believe that another year is over and a new year has begun. As they say “out with the old, in with the new,” right? It’s a new year, a new day, I have a fresh cup of coffee… same ole body.  Hmm, that didn’t go as planned. I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry and dishes to clean.

I think the new and the old ran into each other and crashed into a pile on my bedroom floor. It even tried pulling me down there the other day. That accounts for the bruises I now have.

As I reflect over the year gone by, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It has also been a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time with multiple sclerosis I was struggling with the use of my legs more than I ever thought possible. I couldn’t hold myself up in a standing position without support or use the recumbent bike in my exercise room without using stretchy bands to hold my legs into position by tying them around my calves in order to peddle without my legs flopping off their position. Rehab was my goal to gain further use of my legs.

Although rehab was well worth it and the exercises I learned I still do to this day, my legs never returned to their full function. Does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from my chair shaking my trembling fist in the air at MS.

I know it’s not easy to find the good around you when the tears come so easy, but there is good out there. Being diagnosed with MS isn’t the end of the world so don’t let it ruin your year before it even gets started. There is a light shining through the darkness. And no, it’s not the light of a train barreling down the tracks heading in your direction. It’s hope.

Regardless of everything happening in your world and the weakness you feel in your body, choose to go into today filled with hope. Hope is the very thing that will get you through the struggle and keep you going when everything else around you appears to be falling apart. Hope that in spite of MS you will accomplish great things this year.

I hope for a cure.
I hope for strength.
I hope for less pain.
I hope for laughter.
I hope for understanding.
I hope for pancakes, lots of coffee, and chocolate…definitely chocolate.

Out of everything I could hope for, most of all… I hope for hope.

Think back over last year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life… and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person that you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower. But you… YOU are not your MS.

You are an amazing, beautiful, lovely, awesome, precious, one-of-a-kind, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability. Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

As this year begins, choose to be thankful for all the beautiful moments you have waiting for you and choose to use the terrible times of yesterday as bricks to fill in the potholes along the way. I can’t promise you that the new year will be wonderful and void of any pain, but I can promise you that each brick you place along your MS journey, you are building a path that may ease the burdens of those that will come along behind you.

MS may only leave destruction in its path, but you are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you? Don’t ever underestimate your value and worth. You are priceless and those bricks… well, they just might be rubies, emeralds and diamonds which only get formed by pressure! You’ve had loads of pressure to build from. I’m proud of you for not giving up.