Posts

Understanding my journey with Multiple Sclerosis

/3 Comments/in /by

I wear shoes most days. Although I still prefer my barefoot moments, but protecting my feet is way more important these days especially since I don’t have much feeling in them anymore.

Today, my everyday shoes are nice and clean, but that’s only because I don’t actually walk in them anymore. I just wear them as I wheel myself about in my powerchair. They keep me from stubbing my toes or banging my feet into the walls which happens quite often. I actually broke my big toe running into my work station in the garage where I keep all my tools. My hand was tired steering my chair and it seemed to have a mind of its own. Then… B A M.

When I was walking, my everyday shoes were a bit worn and scuffed. I had been many places with them on my feet. If they could talk they would tell of traveling around the world, going to the theatre, spending time with friends, out shopping and visiting beautiful landmarks. I felt unstoppable and on top of the world.

They would also tell of the day I went to the doctors office for tests because I was having a hard time walking, seeing and feeling parts of my face and body. That day was a day of tears, but not the good kind of tears. It was a day I wish I didn’t have to go through, but my shoes were with me and walked me down those sterile hallways at the hospital. They saw my pain and felt my discomfort as a diagnosis of multiple sclerosis was made. If only they could talk.

No one has ever walked in my shoes. I doubt they could fit in them even if they tried. I think my shoes are a little like Cinderella’s… you know, how out of everybody in the kingdom, no one had a foot her size or could fit into her lost shoe. It’s amazing how not even one person could wear her shoe. It was unique to her.

I’ve heard it said that you can’t know someone until you’ve walked a mile in their shoes. People like to throw out opinions of how I should live my life, but in actuality, they don’t know my journey. They haven’t lived my story. When you’ve lived my life only then can you judge me.

Don’t let someone judge your pain or your response to the difficulties in life while standing in their own shoes, not once putting them aside to walk in yours first. They can’t know your pain, sorrow, happiness, joy, depression, heartache, doubts, fears, and laughter. They can’ know your life if they aren’t walking in your shoes. Some people can’t handle the truth let alone tell it. Don’t judge me until you take a hard look in a mirror at yourself. Hopefully it doesn’t break. (Grin)

And besides I gave most of my shoes away when I discovered I could no longer wear them. My high heels… gone. Flip-flops… gone. Even my favorite tennis shoes… gone. All because I needed an AFO brace to help me walk on my own. That journey alone was heartbreaking.

We each have our own journey and our own shoes to wear. When you put your shoes on today, remember how far you’ve come and the miles you’ve been. Each scuff mark is a story of trying. Each smudge is a part of not giving up. Your journey isn’t over… it’s only just begun. So, let’s go forward Warriors.

My body has limitations that aren’t negotiable

/2 Comments/in /by

Stating my reality is not an excuse. When I tell you I can’t do something or I’m in pain, it’s not an excuse. It’s not a matter of not being positive enough or not trying hard enough. It’s my reality. It’s the truth.

It’s important to understand that being realistic does NOT mean giving up on your dreams. If there is something you really passionately want to do, but it would be challenging, you still may be able to do it if you plan and prepare appropriately.

Consider each activity more by how much you want to do it, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You know your body’s limits, and what is or isn’t worth the fight.

Be conservative in your planning at first so you can learn what your limitations and capabilities really are. Be aware that they can change often but you do have every right to push your limits and try to do the things that are important to you. The key part is to figure out what that looks like for you. Sometimes what you think will be super easy can actually be some of the most difficult things you do.

I have gone from being the person who organizes events to someone who is unlikely to have the cognitive space to complete the plans and worse, may pull out at the last minute or even won’t be able to join in on the celebration. Sometimes I am not even strong enough to take a shower in order to make myself presentable. I typically manage a quick text, before sinking back into exhaustion. Holiday times are the worst experiences for me.

An observation I have made is that some of my friends and family have taken this personally and assume that my change in behavior is a reflection of my feelings for them, rather than a symptom of MS which can change from day to day.

I can be so quiet about my struggle that people around me can forget they I’m hurting. This doesn’t mean I’m not having difficulties, it simply means I don’t want to bother them and keep saying the same thing over and over again like a broken record. I just wish my struggle could be better understood by those around me and that my worth wasn’t defined by what I can or can’t do.

This kind of disconnect can cause loneliness to set in which is tough to get through. The magic of human connection, just being seen and heard through the MS struggle, can be a great relief to the loneliness. A real conversation with someone who has taken time to ask and then genuinely listen can be worth more than all the plans and parties combined.

Stay strong for who you are — a person deserving of love. You have so much to offer the world just by being your authentic self. Don’t let self-doubt hold you back from living a meaningful life and embracing moments of joy and connection with others.

I want you to know that you are not a burden. Don’t let those negative thoughts define you. Your challenges or limitations do not make you any less worthy or valuable. There are people who see your strength and resilience in the face of difficulties and are encouraged by it. Focus on surrounding yourself with people who appreciate you for who you are, imperfections and all. Be the reason they feel less like a burden and more like a blessing.

I want you to know there is light ahead, even in your darkest moments. You can get through this. Stay strong and keep your head held high. Happier days are coming!

I always say MS is a disease that keeps on taking

/2 Comments/in /by

Have you ever wondered if someone else has the same outlook as you regarding multiple sclerosis and all the troubles it brings to your life? Does someone think the same thoughts as you? Or maybe you look at your life and decide you’re all alone in your opinions about life with MS. Voicing a thought that’s contrary to popular opinion can be funny at its best, or terrifying and nerve-wracking at its worst. But having an unpopular opinion that goes against the status quo may not be as uncommon as you think. You just may be the only one brave enough to say it.

Many people don’t like talking about how much a person’s life changes when a diagnosis of MS comes along or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Just because people aren’t talking about it or choose to hide their struggle, doesn’t mean it’s not real.

Suicide rates among those living with MS are twice as high as those of the general population. The reason? Because our symptoms continually progress (meaning they keep getting worse) making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and a lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day life, and as time passes they seem to only worsen.

It’s kind of like watching a grape slowly withering on the vine even though it’s given plenty of water, sunshine and care. We experience changes in our body and feel them with such intensity that it’s hard to even put our disease progression into words. We can actually feel the numbness, pain and difficulties creeping up our legs, arms and entire body to where one day it may just be our big toe that we can’t feel and the next it’s our entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up emotions. All we want is to fit in, get our life back, and live that carefree life that MS stole from us. I always say MS is the disease that keeps on taking.

Who wouldn’t get depressed knowing that their body was destructing from the inside, out? Sometimes it’s easy to face the struggle, but many days it’s a battle between sanity and trying to hold onto our dreams. It’s when those dreams begin to fade and all we have left is the pain and confusion, that’s when the tears begin to flow and depression rears its ugly head.

You see our smiles, hear our laughter and admire our strength, but in actuality we know those things are only hiding the pain… both the emotional and physical pain.

If you are having a wonderful day, please don’t criticize someone who isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to people for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to talk with a counselor or psychologist. There’s nothing wrong with needing help with your inner struggle. We all have them. It’s just sometimes easier to face the pain with someone else’s help than trying to do it all alone.

Don’t give in to this relentless disease. We are all here for you, standing with you, reaching out in our own kind of way to help. We may not be perfect, life may be a mess, but you are loved, cherished, needed and oh so wonderful.

Life may not have turned out the way you expected, but you have a story to share that can help countless of people cope with the unplanned and unexpected. Talk about what’s going on. Help others see that the struggle is real. It’s time to let go of holding on so tightly to a life that once was. Let go and come dance with me.
________

If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ― Stephen Fry

Don’t lose heart

/3 Comments/in /by

Multiple sclerosis has taken so much from me. Some things I don’t miss, but it is heartbreaking to discover that my ability to play the guitar is now one of them.

I decided this week that I was going to get my guitar out to try and get my music going again. I was a really good guitarist playing for weddings and even played in a few concerts singing before thousands of people. I have missed it and was hoping I could get it going again.

I was trained classically by the Dean of Music at a university near where I lived in Missouri. He gave me private lessons and I had even impressed him with my skills. My voice is no longer strong enough to carry a proper tune but I thought I could at least get a few notes out that made some sense on the guitar.

I was at least able to remember how to manually tune the strings. I got my pitch pipe out so I could get the fifth string of the guitar in tune and then made all the other strings properly match up. I had always used a method called harmonics to help me get the strings tuned. I never had an electronic tuner like many musicians use.

Once I got the guitar properly tuned I thought at least I could make something of my efforts. But I sat on the couch a bit dumbfounded trying to remember the first strokes to my favorite song. I couldn’t get my right hand working at all. No picking and grinnin’ was going on. All I could do was a simple strum and to me that’s not as pretty as being able to use my fingers to create a beautiful melody.

My left hand was able to make the chords but I couldn’t do much of anything with my right hand in order to strum. I sat in tears mourning my lack of ability to play. I had hoped I could get something out… but nothing made sense anymore. It was heartbreaking.

I pulled out some of my sheet music and sadly couldn’t make sense of it any more. That was a really sad hard hitting reality for me. I never thought I would lose my ability to create music. All I can do now is just listen to the beauty others create. At least I will never lose the music in my heart. It’s still there. Maybe a whisper, but it’s still there.

When things don’t go as you had hoped you can’t give up. I promise you things will get better, one way or another they will get better. You can take my word for it. No matter what trial you are going through you can’t lose heart. Tomorrow is a new day, don’t forget that. You are not alone. I will walk with you through this valley and together we will make it through. Don’t lose heart.

My never-ending multiple sclerosis struggle

/4 Comments/in /by

I’m not going to lie and tell you that life is wonderful at the moment or pretend to have all the answers. The truth is, life is hard and for those of us living with a chronic illness it seems harder than it does for others because our struggle is never-ending and always changing.

Each morning I wake up exhausted but thankful that a new day is here filled with its countless possibilities. Throughout the day I face challenges that at times can become overwhelming, painful, and sometimes more difficult than I had ever imagined. Multiple sclerosis challenges can cause a lot of trouble and bring about a battle that I don’t always have the strength to fight. But somehow I gather enough strength to come up swinging. I refuse to let the struggle win.

Just yesterday I fell yet again transferring to my powerchair. You’d think I would have found a way to avoid it but I never do. I tend to go from point A to point L, M, N, O, P before I find point B. But even in my roundabout way, I get there. With my new bruises, wounded pride and 2 large cups of coffee I was able to get through the day. I made it… or so I thought.

It was right before bed that I discovered a leak in my urostomy pouching bag used for my makeshift bladder so I had to clean myself up and  put on a new pouch. Just doing that took the remaining strength I had left. My hands weren’t working well for me. Between tremors and weakness my hands were making the change difficult.

I barely had enough strength to climb into bed. When I finally got to bed for the night I paused to reflect on my day and without fail I realized that I made it through another day with MS. Maybe bruised and a bit wounded, but I made it through. As I closed my eyes I did so with gratitude and with a heart filled with thanks that I made it through another day.

After all that I remembered that a new day is coming. What will that new day hold? Will it be a good day, a terrible day, or will I even have enough strength to get through it? Will I cry? Will I laugh? I just don’t know. All I know is a new day is coming.

I know an MS life can be hard, but through the struggle I want you to remember this…

When things get bad, no matter how hard they become, know that even on your darkest, cloudiest day, the sun is still shining from behind the clouds. It hasn’t fallen out of the sky. It hasn’t run away or been turned off. It’s still there and although the storm clouds can become daunting and terrifying as they hide the sun from view, they will eventually shift and you will find those beautiful rays of light peeking out once again.

Don’t let your struggle steal your happiness. Stay strong and find new ways to persevere. Remember those moments when you pushed through the pain and managed to wade through the darkness? Those are your strongest days. You would have never experienced such strength if you hadn’t been pushed so hard to find a way to survive.

And that’s what you are…a survivor!

You are not alone in this journey with MS. Brighter days will come. I can guarantee you that.

Oh, look…I think I just saw a little bit of sunlight peeking through the clouds. It’s a new day filled with new possibilities. You are going to make it!

MS altered my life but it doesn’t define it

/2 Comments/in /by

I think all of us long for the day when multiple sclerosis no longer exists. When we wake up in the morning to find that not only is there a cure which has eradicated MS from the planet, but one that has reversed the damage already affecting hundreds of thousands of people worldwide.

I woke up this morning and sad to say, today wasn’t that day. So what do I do? Do I get angry because of the struggle? Do I allow depression to overtake me? Do I resent the fact that life is so very different than I ever planned for it to be? Or, do I choose to recognize that life will have problems no matter what I’m facing or where I’m at and that it’s necessary to find some good in the day if I am going to get through it. Can that even be done?

It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.

I can tell you that as a fact because I took a shower this morning but struggled to gather up enough strength just to dry myself off. At least I remembered to rinse all the shampoo out of my hair before getting out. But since I have gotten dressed I’ve been dragging just to get myself going. Why do I do that to myself? I know that showers are one of my enemies that I need to be cautious of because it increases the weakness throughout my body for at least an hour afterwards. Telling me to ignore my weakness or even to pretend it doesn’t exist at a time like that is preposterous. I need a nap not a judgement from a heartless uncaring individual.

The most important thing I could ever tell you in life is that you are much more than your weaknesses and strengths. You are so much more than MS. Don’t let it define you.

  1. Try to express gratitude for the simple things: a warm shower, buttered toast and the smell of rain. Practicing gratitude helps focus awareness on what is going well.
  2. Recognize anxiety triggers. An upcoming MRI scan or doctor’s appointment, even walking into a medical office may bring up feelings of dread. Sometimes just recognizing anxiety can help dissipate some of the nervous energy.
  3. If you don’t quite have your pre-MS stamina, find a new way to experience what you love. Do you enjoy gardening? Try floral arranging. If golfing brings you pleasure, don’t throw in towel if you can’t complete 18 holes; set up a putting green in the living room.
  4. Stay engaged in life activities. Don’t delay living life to the fullest and planning for more. Make vacation plans or enroll in a community art class.
  5. Get physical. If there is a universal remedy for any type of illness it’s “keep moving.” The body is made for movement; without it, muscles shrink and weakness sets in. Ask your healthcare provider for a referral to physical therapy to jump start your physical improvement program.
  6. Connect with others who are thriving in spite of an MS diagnosis. What are their coping strategies? Healthy support groups can be a place of refuge where your feelings can be validated by other people sharing a similar life experience.
  7. Have tough conversations. Talking about the future can be hard. Sometimes just getting the conversation going is a tough problem to overcome. But if you’re talking with your close circle of family and friends, that’s a great start.

There are times when we need to put on a brave face even when we don’t feel very brave. To recognize our worth, beyond our accomplishments and bank account balances. To look MS in the face and say “I’m not afraid of you and will not be defeated along my journey into the unknown with a chronic progressive illness.”

It’s important to embrace yourself as you are without the need for constant comparisons. Remember, it’s okay to take your guard down once in a while. Everyone needs a moment to be themselves, away from the judgements of the world and from those that don’t want to navigate around our limitations. A place to be authentic.

Authenticity is about being true to who you are. It’s about embracing your strengths, accepting your weaknesses, and living in alignment with your values. As Oscar Wilde famously said, “Be yourself; everyone else is already taken.” This quote sums up the essence of authenticity. It reminds me that our authenticity truly defines us.

As we navigate through life, let’s strive not only to understand the struggles that we face but also to appreciate the unique individual that we are. I challenge you to shift your thoughts to focus on what you do have rather than what you don’t. I think you’ll be surprised at the strength that rises up in you.

Not being able to communicate can be frustrating

/4 Comments/in /by

I lose words more than I lose my car keys…and they’re harder to find too. I think conversations with me are more like a game of charades than actual conversations. I’m sure it frustrates those I’m talking too as they try guessing the word I’m fumbling around in search of. It can become quite comical too as I point, make hand motions and slap my leg in an attempt to help the process along.

ME: Can you hand me…? [as I point across the room]

FRIEND: Uhhh…a pen? A glass of water?

ME: No [as I tap my thumb to my finger in a pinching motion unable to even describe what I’m trying to say. I sit in silence making hand gestures in hopes it resonates with her.]

FRIEND: Nail clippers? Scissors? Paperclip?

Minutes pass and all I’m trying to say is “Can you hand me the TV remote?” Simple, right?

Not being able to communicate can be frustrating. I do much better in writing. There’s nothing worse than trying to get your point across or share a meaningful moment with someone while losing the thought you were trying to share. Sometimes my attempt in describing a word takes so long that I actually forget the thought I had in the first place. It takes skill to keep me on topic. A skill I’m not always very good at.

Yesterday, I could tell my words were getting stuck and mixed up more than usual. When that happens, I have a tendency to not speak as much. I just don’t want to frustrate people… or myself.

You know how people say to pick and choose the arguments you get in. Well, I pick and choose each conversation I have as well. So if I choose to share a thought with you, it’s going to mean something because I chose to break out of my silence in order to chance a good flow of words.

I have noticed that the more frustrated I get, the more my words get stuck. The trick for me is to stay calm and not allow my mind to wander. That may mean I talk slower, talk more direct, or use shorter sentences. But that’s just my way of coping and working with my disability. It keeps me from getting overwhelmed. I say what I have to say and move on.

When you find yourself getting lost in a world of words, know that it’s okay. You’re not going crazy and you definitely aren’t alone. There’s an entire population of us hand gesture, charade playing, word searching MSers out there. Take a deep breath and have some fun as you turn your conversations into a game of Guess What I’m Saying. Laughing always makes things better.

Yes, Multiple Sclerosis Is Real

/7 Comments/in /by

Sometimes it feels like my head is stuck in a shaken snow globe that’s waiting for the flakes to settle…only the flakes never do. That’s the dizziness and vertigo I’m experiencing right now.

Most days it seems I am fighting a never-ending battle. There are times I wake up thinking all is good and that the spinning is gone, but as soon as I get up and start going about my day…boom, it’s back. It never seems to go away for long. I think it just takes periodic bathroom breaks or trips to the refrigerator for a snack. I’ve tried to talk it into moving to Kalamazoo, but for now it has no plans on leaving.

Living with the vertigo, or any MS symptom for that matter, is not an easy thing to deal with day in and day out. It can cause you to feel like an outcast and all alone. For many, that’s the very reason they give up and withdraw from life.

I was tested for BPPV (benign paroxysmal positional vertigo). It’s when small crystals of calcium carbonate within one of the organs of the inner ear becomes detached and moves into another part of the inner ear causing dizziness. I didn’t have that. So it’s more of a mystery for now.

The pressure of trying to explain yourself all the time can be tiring, especially when those explanations are met with blank stares or unsympathetic responses. No one wants to be told to suck it up every time they are having a difficult moment. No one wants to feel like they are losing it because the people around them just don’t get it or care to want to understand.

Know that you are not delirious. What you are experiencing is real, and although it can be difficult to make it through your day, or even to get through the next 5 minutes, you have to keep going. I believe in you. Take it one step at a time… one breath at a time if needed.

I’m going through 3 days of Solu-Medro infusions to help restore some of the energy I have lost. I have no idea where it went but it seemed to take a vacation without me. I can’t stand up without my legs giving way within seconds. Trying to dry myself off after I shower is a near impossibility. I more drip dry than towel dry. So I just wrap myself in a robe to dry off.

I don’t have enough energy to squeeze a bottle of mustard for a sandwich. Driving make me dizzier than dizzy. All the movements around me affects my vertigo which goes haywire with just a hint of movement. So much craziness… and I hope the infusions will help restore some of my energy and give me my life back. For know it’s just a waiting game filled with lots and lots of hope.

Join me and choose to love yourself enough to hang on. Today is a new day filled with new possibilities. Remember, you made it through yesterday, you made it through some other really tough times too…you will get through today as well!

Vision problems and multiple sclerosis

/10 Comments/in , /by

My eyesight has been giving me more and more trouble lately. When I wake up in the morning it takes me more time than usual to properly focus. I will prop myself up in bed and have to rub my eyes countless times just to see straight.

At that time of the day don’t expect me to be able to read a text message, email or anything else for that matter, without difficulties. If a text message is not responded to for more time than what was expected, don’t hold it against me. I will eventually get to it… by next year.

At the age of 12 I started wearing glasses and hated all the difficulties just trying to keep them clean or to not fog up in humid weather. Twenty years ago I got Lasik surgery to correct my vision. According to the Ophthalmologist, now my eyesight is 20/20. There’s a lesion in my brain that is causing me to have some blurred vision in my left eye but other than that, all is well there.

The problem for me is that the muscles in my eyes are weak and causing me to see a shadow beside each letter. It’s called double vision. It’s like a copy of the word is overlapping itself but slightly offset making a confusing mess. Even making the text display a larger scale helps to read clearer but doesn’t remedy the issue.

Just writing this post is cumbersome and takes more time than usual to complete. Of course I have become a hunt-and-peck typist unlike in my glory days where I could type over 75 words a minute. Between eyesight and numb fingers, I feel helpless with the internet.

And don’t even talk about telling me to use a speech to text app. The apps always misunderstand what I’m saying and interpreting it with a bunch of nonsense. Then once I correct the word errors, the punctuation takes extra steps to properly add. It’s a no win situation.

I have noticed when I’m watching TV I tend to close my left eye in order to view things clearer and to help keep me from getting dizzy. Yes, my eyesight makes me dizzy at times. Who wants to be on a rollercoaster ride while watching a movie? Not me! Thus the one eye method works. It’s like my eyes aren’t tracking exactly one with the other as they should.

My advice… relax and be grateful for whatever sight you have. Recognize the challenges that show up and look for the bright side through it all. Appreciate the adventures you may encounter along the way for there will be many.

Today I didn’t grieve for my health issues

/6 Comments/in , /by

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?