Posts

The Loaded Question: ‘How Are You?’

/2 Comments/in /by

Last week was a long, hard week. I pushed through pain, frustrations, difficulties, weariness, weakness, emotional stress, financial strain, the unexpected, and loneliness. If I was to list everything I dealt with the list would actually take pages and pages of writing. This one teeny tiny page with a collection of words is only a small speck into my world living with multiple sclerosis.

That’s why it’s so hard to answer someone when they approach me with the question we all hear…”How are you?”

How am I supposed to answer that question? Do I honestly dump all my insides out on the table allowing myself to be vulnerable, exposing all that I am for someone to pick through? Do I share only a small part of the first thing that comes to my mind in hopes I’m not judged for what I say? Do I choose to not share anything personal at all and simply fake a smile as I reply with the age old response “I’m fine?”

And then the questions I ask myself at that very moment: Do they really want to know? Are they asking just because it’s the polite and social thing to do? Do I have time to spend on explanations and justifications when they look at me puzzled due to a lack of understanding? Do I really feel like having to explain myself for the umpteenth time?

It’s amazing how many thoughts run through my mind in those few short seconds between “Hello” and “How are you?”

Many times I am able to quickly evaluate a person’s motives and concern for my wellbeing and I choose wisely. Other times I miss it by a mile. I have found the best response is always an honest one. Sometimes it requires carefully constructed words like…

My lawyer says I don’t have to answer that question.

OR

Living the dream… but half the time it’s a nightmare.

The most frustrating thing about living with a chronic illness is having to answer someone who asks “How are you?” when there is no easy answer to give. Why don’t they ask “Are you okay?”  I would be able to answer that one. Unlike a broken leg, MS is always there. It’s not temporary, there is no known cure, and it changes from day to day and even moment to moment.

I have found that if someone truly wants to know about me and how I’m doing, they will take the time to stop, focus on the moment and actually listen. We need those kind of people in our life, and we need to be those kind of people to others.

Today, I’m fine to most of the world, but to those who really care and want to listen,

  • I’m tired (or more like exhausted),
  • Stressed about decisions needing to be made,
  • A financial mess,
  • Dealing with a lot of pain,
  • and Feeling sad mixed with a little bit of hope.

How do you usually answer ‘How are you?’ when living with MS (or supporting someone who is)? Share in the comments—I’d love to hear your go-to responses.

 

 

I’m needing help for the annual website costs of Positive Living With MS. Your donation isn’t just money; it’s an investment—an assurance that those who need a word of encouragement. 🙏

With heartfelt gratitude, I thank you from the depths of my heart for your help.

Show your support by going to this link

 

When taking a shower hurts

/2 Comments/in /by

It seems easier to think and cry in the shower. I have washed many tears down the drain in my lifetime. Lately though, showers haven’t been so freeing. This may sound weird to some of you, but much of the skin on my face, arms and legs have become so hypersensitive that even water hitting me from the shower head hurts. And when I say hurts…I mean HURTS! It feels like I’m being pelted with pin and needles.

I’ve been pointing the shower head to the side wall and filling a large cup with water to rinse the shampoo out of my hair. It makes bathing a bit more complicated, but if I don’t want to smell like a skunk after a long day, I have to change and adapt.

One thing I have noticed is that after a shower I am much more exhausted than I was before I even started. By the time it takes me to bathe, dry myself off, put on some deodorant, and get dressed, I have a hard time holding my eyes open.

If it’s morning I have to take a nap for about an hour or more. If it’s night time I need to be sure to dry my hair and finish putting on some lotion and skin moisturizer. By that time I crash in the bed for the night. I’ve been known to fall asleep curled up in my towel then I wake up with my hair dry and I look more like a drowned cat because sleep overwhelmed me. But regardless of how much sleep I may get, I still wake up exhausted.

I never really realized how much I was truly taking for granted in the past. But today, many things have become a challenge for me to complete that never did before. It’s as if each day, as I pull back the covers to get out of bed, I start my ascend to the top of Mount Everest. I don’t always make it to the top as the day comes to a close, but I press on anyway.

Multiple sclerosis is the disease that keeps on giving and taking away. But regardless, I refuse to let it limit or define me.

REMEMBER: You have this terrible, pesky disease called multiple mclerosis and it’s trying to take over your body, but you are not MS. You are an amazingly courageous person that can still love, dream, laugh, and hope for a better tomorrow.

I will never sugar coat my life with MS

/2 Comments/in /by

Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.

Fall down seven times, stand up eight

/4 Comments/in /by

Fall down seven times, stand up eight is a famous Proverb that tells how attitude towards failure matters and makes a difference in your life. Don’t get bogged down by your failures but welcome them and keep trying over and over again.

From the moment I get out of bed I make a decision and take action. I figure I’m already standing so if I fall I know that standing is possible. My first stumble, falter or wobble is not considered a failure, but rather the start of my journey.

I tell myself, “You were able to stand once so don’t stop now.” At some point, I lose balance or my legs give out and I fall. I may shed a few tears and get mad at my legs for not cooperating but I muster up the strength to rise up and re-try.

At some point, I lose balance again and fall. It happens over and over again… but each time I keep re-trying. It can be exhausting but I refuse to quit. I may sit down for much of the day but at some point I gather the strength I need to try again. I put my brave face on, take a deep breath and try. I have become a pro at rigging up easy ways to fall without injury.

It’s ok to get angry. It’s ok to be frustrated. MS has this way of making you feel useless and unimportant. Don’t believe the lies it tells you and never quit. Don’t think for a minute that MS has won because it hasn’t.

What will the history books say about you? She was challenged daily with limitations caused by MS but she never gave up or she quit the first chance she had.

You are essential and needed. You have a voice and your voice matters. In every problem or conflict that you find yourself in try to solve it. Ask questions and use your voice.

We are all going to have some stumbles or all-out faceplants along the way in this journey called life. We have a choice; they can make us or break us. The fact is, in this so-called life or journey we are a part of, none of us are getting out of here alive, so we might as well make the best of it while we are here. We can just survive or we can use every opportunity we have to rise up.

Regardless of MS and the troubles it causes keep standing together and rise up each time you fall. You deserve love and are worthy of respect. You got this.

I can’t get any air

/8 Comments/in , /by

I almost choked on my own saliva Monday. It was a scary experience. I was sitting on the couch listening to some music and just swallowed. Nothing unusual. Just a simple swallow, but it turned out to be a truly terrible moment.

When I swallowed it seemed to go down the wrong way then I couldn’t get my throat muscles to cooperate. I was unable to catch my breath in the process. A few minutes went by as I struggled to breathe. I leaned forward, raise my arms hoping it would help, tried to massage my throat even turned my small fan on sitting beside my seat but my throat was spasming and nothing seemed to work in resolving the issue. I felt like I was chocking.

By the time I was able to catch my breath I had tears streaming down my face and I was weakly coughing in an attempt to clear my throat. My throat was still spasming. I felt hopeless. I was unable to speak for at least 30 minutes. All I could do was pray, cry and hope for a clear airway to stay.

Those are the times I truly dread and most people don’t even talk about them. I have yet to find a solution aside from making sure I’m sitting up, not reclining. Reclining seems to make it worse. I’m thankful those times don’t happen often but they do happen enough to warrant concern.

I want you to know that you aren’t alone in the struggle. Of course there are countless other struggles we face on a daily basis but all can be overcome with a little bit of patience and hard work. Don’t lose heart when they happen.

Today I’m breathing better and believing for a good day ahead. Believing the same for you too. It’s going to be a good day!

My recent journey with multiple sclerosis

/6 Comments/in /by

Last week I had the scary experience of my legs choosing to quit holding me up. I don’t know if they were tired or just wanted to take a break, but in the middle of a standing transfer from my power recliner to my power chair, my legs decided to give way which meant my body met the floor rather quickly. I wasn’t planning on a visit with the floor any time soon, but there we were, face-to-face.

It took me quite a while to be able to gather enough strength to get back up. Thankfully I was able to MacGyver my way to a living room chair. The hardest thing for me is that I have lost most trunk control so I topple over without both of my arms holding me up when trying to prop my body up in a sitting position. If one arm moves away to do something else I will topple over. Like a 3 legged chair on tilt.

My family came over to help get me to bed mid-afternoon. I just wanted to go to bed because I was hurting. My fall bruised my entire right foot. It’s still purple today but the swelling has gone down. Not yet sure if anything is broken until I meet with the Orthopedic doctor. I have no feeling in my toes which doesn’t mean much because numbness in my legs and feet had been creeping deeper for months anyways. So it was a terrible day from the very start.

Many times when our bodies quit working as they should, we become discouraged. Those helpless times open the door for our thoughts to run wild with fears, and sometimes we find ourselves growing tired in the struggle.

This journey that we’re on — this journey called life — I know it’s not perfect. It has many hurdles and obstacles that keep jumping in the way. We can allow those difficulties to make us angry because our path has become hard and seemingly impassable, or we can choose to be thankful for the lessons we learn along the way.

I know it sounds crazy to be thankful while facing a monster like multiple sclerosis every day, but it’s possible, and you can be too.

What lessons? For me…

MS has taught me to hold it together when I would much rather fall apart.
MS has taught me to keep going when it would be so much easier to just throw my hands up and quit.
MS has taught me to rise up in strength when every part of me is weak and weary.
MS has taught me to always be grateful in the good times and to find the good in the bad.
MS has taught me to allow the tears because they provide water in the desert.
MS has taught me to sing even when I have no song left to sing.
MS has taught me to laugh in the face of sorrow.
MS has taught me to join hands with others just like me so no one has to face this beast alone.

What great life lessons. Lessons I have never regretted. You see, I have discovered that I am weak. My emotions, my thoughts, and especially my body…all weak. Friends may not understand the battles that I fight or realize the fragility of my life, but even when I’m alone in the journey I will hold my head high.

MS has made me strong in ways I never thought possible. I stand strong even while lying flat on the floor.

My strength is not something that can be taken away, it is something that grows with each passing day. Instead of allowing the struggle to defeat me, it is only making me stronger. I am strong because of my journey with multiple sclerosis, and that, I would never trade.

Stand strong in your weakness. Hold your head high and proudly wear those battle scars…those bruises and scrapes you have collected over time. With your sword in hand, charge forward in the fight. You are not defeated. You are just getting started.

MS mystery of the day: What Happened?

/4 Comments/in /by

This morning I woke up to a few mystery bruises. You know, those dark marks on your skin that appear overnight for no apparent reason. I have no idea who I was fighting in my sleep. Maybe an anvil fell on top of me in my dreams. Hey, it could happen. Anything’s possible, right?!

I am always fascinated when things like that happen. I began playing the past few days back in my mind trying to piece together the story of what happened. Most of the time I’m unable to determine exactly what I did. All I know is I went to bed last night and my arm was fine. I woke up this morning and BAM…I’ve been sucker punched and am now the proud owner of a black and blue softball sized bruise on my upper arm and a few small ones on my shin.

Multiple sclerosis comes with a full array of mysteries. I think I wake up to a new one every day. I have to say that I know for a fact the answer to them is not Colonel Mustard in the Library with a Candle Stick. Maybe it was Professor Plum? Or Miss Scarlet?

For now though, today, if anyone asks me what happened I’m going to tell them that some idiot tried to rob me in the middle of the night but due to my quick thinking and amazing skills, I karate chopped him to the ground and sent him to the hospital. Might as well have a little fun with it. It will be interesting to see who actually believes me.

I try to always put a fun spin on the things that happen in my life. If nothing else, it’s entertaining. Besides, I’d much rather laugh than cry.

I’ve been kidnapped before, run over by a tractor, fallen in a pool dressed as a clown and ridden a horse backwards while wearing a flaming hat. If you believe any of that, I have a piece of the moon I can sell you for $100. It even comes signed by ET himself.

Try making today into something fun. Find a laugh in the ordinary, mundane or chaos. Get creative. Enjoy your day regardless of the mess around you. Anything is possible with just a little bit of imagination. This life is so interesting. I always wonder what’s going to happen next.

I gotta go. Cookie Monster is cooking me breakfast and it sounds like he might have mistaken the plates for cookies again. Good morning, good afternoon and good night everyone.

My night of sleep… yes, I said sleep

/3 Comments/in /by

Emerging data suggests that extending a nightly sleep duration of people who habitually get insufficient sleep is associated with health benefits. My doctor has changed the dosage of Trazodone that I take to help me sleep at night because I told her the previous amount wasn’t helping as it did at first. Amazingly enough the higher dosage did help me get better sleep last night.

I was so deep in sleep that I had a dream a friend was over at my house. We were talking and I told her I needed to excuse myself because I had to go to the bathroom. Keep in mind I’m still asleep. In my dream I was on the toilet and attempting to empty my bowels.

That’s normally not an easy task when I’m awake even with a daily intake of stool softeners. I was using my abs to attempt to push hard… while asleep. That’s the only muscle group that works for me to empty my bowels. I even told my doctor I have washboard abs now all because of it.

Thankfully,  I woke up realizing I wasn’t on the toilet and hadn’t push hard enough to get anything out yet. I transferred to my power chair, made my way to the bathroom and barely got there in enough time to do my business without making a mess. Phew…

That was a close call. We’ll see how things go in the days ahead and if the higher dose works without any further dream issues. I sure hope it does. I really need all the rest I can get. I much prefer sleep to chronic insomnia.

Healthy sleep is important for cognitive function, emotion regulation, physical development, and a better quality of life. Considering I’m a person living with multiple sclerosis, it’s imperative to have a good developing immune system.

Sleep is incredibly effective at helping repair the day-to-day cellular injury that happens, but most people don’t get the amount of high-quality sleep needed to do so. Its impact on the nervous system works best when we’re asleep doing the vital work needed to keep our cells thriving, but you can also get tremendous benefits from other types of rest as well.

If you’ve ever found yourself feeling blissfully calm during a massage, drifting in and out of consciousness while meditating or praying, breathing slowly and rhythmically while reading a book, or pleasantly lost in thought while on a walk in nature, you’ve experienced a sense of deep rest.

The process of sweeping away and recycling old or damaged cellular material truly helps rebuild new cells and minimizes inflammation levels throughout the body. I like the thought of that. So if a medication will help me to get that rest, I’m all in for it. I’ll let you know how things go in the days to come.

An open letter – from someone living with MS

/8 Comments/in , /by

To whom it may concern:

There is an entire world filled with people who don’t understand multiple sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will help open your eyes and heart to what life is really like for me…hopefully giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that multiple sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me explain what happens day in and day out. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try and tell me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil and baking soda…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. If I express a concern that I am having due to MS or talk about a new symptoms I am facing, responding by saying “get over it” doesn’t help in any way.

I’ve always thought that to be a strange response. Get over what? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over? How am I to get over something that I’m living with on a daily and minute-by-minute basis. It’s easy for people to come along and say “get over it” when they aren’t experiencing my challenges, but a person doesn’t just get over multiple sclerosis…they live with it.

Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the next movie coming out. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully.

That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple sclerosis awareness is needed all around the world.

Computer failures are a lot like multiple sclerosis

/5 Comments/in /by

Have you ever had one of those days where everything seemed to start off going great but then things shifted and everything went wrong? Where the unexpected happened more than once and you hadn’t even gotten out of bed yet? Those days can be frustrating, irritating and make you want to scream. I’ve been there more times than I can count.

That’s kind of how I feel when my laptop starts acting up. It doesn’t happen often, but I have had times when my computer has failed me. I’m a fix-it-myself kind of person. A techie geek who thrives on having a well running computer. I will visit online forums reading from people who know more than me in order to resolve a problem.

One time I had a person reply to me on a message board, “Since you’re getting that error, you need to do this and this.” So, I did this and this, but it didn’t work. Then someone said, “No, you need to click that and change this.” So I clicked that and changed this but that didn’t work either.

I attempted suggestion after suggestion with still nothing fixing my problem so I ended up doing what we all do, I went to the experts. When I brought my computer in to get it checked out even their diagnostic programs were unable to pinpoint the problem. Their answer, “We need to replace the logic board.” (That’s just a fancy word for the board inside the computer that handles all the communication processes.)

Computer failures are a lot like multiple sclerosis. You may have difficulty with spasticity in your legs and someone will say, “You need to take potassium. That’s what I do and it worked great.” You buy some to try and you become disappointed because it doesn’t help for you.

Then someone says, “No, you need to change how you do this and do that instead.” So you do what they suggest and still no change. Then someone else comes along and says, “No, no, no, they are all wrong. You need to eat this and take this other thing.” So you do it…and again no change.

So many solutions for just one problem, yet because we are all unique and we all have a different internal wiring system, what works for one person may not work for another.

The biggest thing I would like for people to understand, both those who live with MS and those who don’t, is that every person’s internal “logic board” may connect all the same parts together, but somewhere deep inside where no one can see, there’s a malfunction in those of us living with MS that has disrupted the communication between our brain and our body.

Sometimes a simple tweak or adjustment here or there does the trick and we are up and at em’ going strong once again. But sometimes the “logic board” has failed to the point that no one, not even the experts, can pinpoint where the failure is taking place.

It would be amazing if we could simply replace our body’s internal “logic board,” but we only have one so we have to take care of the one we have as best we can. My response to the barrage of fixes and solutions people push my way…”Thank you for your suggestions, but I know my body and am doing what I believe is right for me.”

Everyone wants MS to be cured, especially those of us living with it day in and day out. How about instead of pushing the latest craze or fix, we chose to love each other and simply be there to support a persons decision in how they believe their MS should be managed. Giving someone a hug or holding their hand is so much more comforting than pushing internet solutions and unfounded cures or fixes at them.

When everything around you seems to be falling apart, know that you are not crazy or alone. There are others feeling the same way. Do what you believe is right for you to do and don’t get discouraged by all the nay sayers, experts and trendies. Always remember this one thing: Even though your body has failed you, you are not a failure. You are an amazing, strong and resilient MS warrior. You got this!