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A life with multiple sclerosis isn’t easy

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I have never climbed Mount Everest but it seems like every day I scale its twin. Somehow this twin of a mountain is in front of me as soon as I open my eyes to start the day. As the morning begins I am faced with a new climb in my journey with multiple sclerosis, sometimes even before I pull back the covers.

One day I may be staring at a gigantic wall of rock that seems impossible to scale and the next day my path may be a gently sloping hill of grass. I never know what part of the climb I will be facing until it is there in front of me. If I had my choice, I would pick the gently sloping hills every time. They make it much easier when I fall down. Those rocks hurt.

But no matter what I am facing, the thing I keep reminding myself with each forward motion I take is to never give up…even if I am on unsteady, shifting rocks. A life with MS isn’t easy no matter what you are dealing with, but at the end of the day I lay my head down on my pillow knowing that I did the best I could. That’s what really matters anyway, doing your best.

Today I have to have blood tests done to make sure my white blood cell counts are good, then I have a load of laundry to finish and my kitchen needs to be cleaned up. All things I would much rather avoid, but they’re not going to get done without my help. I also have yard work to do which I want to wait for the early morning hours when the temperature is cool and my body is more manageable. That may have to wait for tomorrow. I just need to make sure I pause enough so I don’t get to weak and useless.

If you are facing an overwhelming pile of work that needs to get done before the end of the day or are weary from the difficulties life has handed you, take a moment to pause in your climb. When your emotions are going bonkers, the pain becomes too much, your blurred vision is limiting your view…pause. When nothing seems to be going right and your hope of a better tomorrow seems to be fading fast…pause.

It doesn’t have to be a long pause, just enough time to catch your breath. No matter what you may think, pausing doesn’t mean you are giving up. It actually helps to give you the strength needed to keep going. Pause, but don’t quit.

You really do have the strength within you to keep climbing, to keep going. I hope you pause long enough to find the added strength you need today. You’ve got this.

Vision problems and multiple sclerosis

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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.

A multiple sclerosis life can be challenging

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I woke up this morning uninspired by the coming days. I got my coffee and thought about what I had to do for the week. Not one of my favorite things because I know it’s going to be hard days ahead. A part of my lawn needs to be tilled and grass seed planted to remove the centipede grass that has taken over from the neighbors yard. My lawn is Bermuda grass. It’s supposed to rain tomorrow so I want to get it done before the rain. The seeds will need the water.

I also have a section of lawn in the front yard that has settled making a hilly part in that area a bit wonky. I need to dig up a portion of it, level the earth there, and replant the unearthed grass. It should be easy right? Ugh, wrong.

My legs don’t hold me up well and using my old powerchair that I use for gardening work is not that easy to use for the hard work ahead. My hands don’t work well either so it’s going to be a comical mess. I’m trying to psych myself up for it.

The thing I have to remember is that I’m not invincible and can’t do things as I could in the past. So what gets done, great! But be sure to give myself some grace as I go and don’t be too hard on myself for things not going as planned. That’s the actual hard part.

In my mind I should be able to do it, but I know my body will fail me along the way, and that’s okay. If I could hire a gardener, I would. That’s a given. But the work is up to me complete. Sometime that’s the hardest part… overcoming my bodily limitations and being okay with the outcome.

I must always pay close attention to how much I’m pushing myself and the added demands I’m placing on my body. It’s okay to take breaks and rest when needed but to always come back with renewed energy and determination. A multiple sclerosis life can be challenging, but it’s important to remember that we are all capable of overcoming obstacles.

Although I can’t plan for every hurdle I might encounter, understand that a slow but consistent effort is vital to rebuilding my strength and nurturing my body.

At times like these I’m reminded of the following quote…

When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don’t you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don’t give up though the pace seems slow –
You may succeed with another blow.

Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor’s cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out –
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you’re hardest hit –
It’s when things seem worst that you must not quit.

– Edgar A. Guest

 

Incontinence… ain’t nobody got time for that!

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Have you heard about the adult diaper spas that have opened in the UK and the USA. Yes, you read that right. It’s a place to nurture and pamper diaper lovers and enthusiasts. It actually caters to people with a psycological disorder that’s been growing among adults over 21.

Sorry, but I don’t see the fun or joy in having to wear a diaper because my bladder or bowels aren’t working correctly. Yes, I have had problems with bedwetting before… but the previous time was when I was five years old!

When I was in the hospital last year I wasn’t able to make it to the bathroom on my own and my bowels were like clockwork. I had to go every morning by 6 am but since I couldn’t get out of bed on my own I wore an adult diaper and the nurse had to clean me up because I made a mess. Two weeks of diaper changing was enough for me.

I was in the hospital to have my bladder removed. For about 7 years I had used a suprapubic catheter (SPC) for bladder incontinence. The catheter was placed in my bladder to help empty my urine but the SPC wasn’t working well for me and of all things it was painful. I had bladder stones that were causing me problems and blocking the flow. When the urologist had recommended removing my bladder entirely I was a bit nervous, but excited as well about the concept. I thought, this will make my life a bit easier to manage than it has been. I’m ready for anything that will help me out.

When I finally got home from the hospital after my bladder was removed, I was able to manage things on my own and so happy. It’s been a year and I believe it was one of the best changes for me since my MS diagnosis over 10 years ago dealing with continued incontinence troubles. I now have a pouch I wear on a stoma the doctor created for my bladder. The pouch is my makeshift bladder and sits outside of my belly area near my belly button. I replace the pouch about every 3 to 5 days but empty it as often as needed like you would a normal bladder. No more issues with trying to hold my bladder and making a beeline to the toilet.

I have to say laughter is the best medicine unless you are dealing with incontinence. I had a feeling of relief knowing that I wasn’t the only one who leaked a little when I sneezed, moved around, or coughed. I wasn’t the only one that had to change their clothes after misjudging their bladder timing.

There’s nothing wrong with finding humor in the uncomfortable aspects of life. Certainly leaking pee is something that happens to many people with multiple sclerosis and although there are certainly degrees of it where some find it obviously debilitating, others just find it annoying. There’s nothing to be ashamed of when it comes to having a badder that rebels. Humor really does help. I talk with people a lot about incontinency. I just can’t hold it in. (grin)

Even if your experience isn’t that bad like it only happens once in a while or it doesn’t disrupt your life very much, there are still reasons to address it. The good news is that it’s never too late to strengthen your pelvic floor. Ask your doctor about it or even your physical therapist about which exercises help. I wasn’t able to use those muscle but for many people doing pelvic exercises helps restore controlled use of the bladder.

Either way, just keep in mind that although there is nothing to be ashamed of when you leak pee, you are certainly far from alone. Will you make it to the bathroom in time? Depends! – they really do help. (Grin)

Be strong

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One of the great American authors, Alex Haley, had a picture on a wall in his office that attracted much attention. It always aroused the interest of his visitors because no one could understand the significance of the photograph to the writer.

On one occasion, a visitor with a perplexed look on his face asked, “Alex, why do you have a picture of a turtle sitting on the top of a fence post?” Haley replied, “I try to remember how this turtle – me – got on the top of that post.”

Sometimes, perhaps most of the time for many of us, it is difficult to admit that if it weren’t for the help of others, we would not be where we are. From our earliest moments until this present hour, we are encouraged by nearly everyone to believe that “You can do it by yourself!”

But this is not true! We all need the help of others. Each day people come into our lives who need help, encouragement, inspiration, an act of kindness, words of sympathy, or a look of empathy. Receiving and giving help are basic human needs and behaviors.

But when you are living with a chronic illness like multiple sclerosis, asking for help isn’t always that easy. It seems like it should be, but reaching out can be tough. Many times you end up feeling vulnerable, weak and exposed for reaching out. And sharing your needs means the reality of how bad your illness has gotten scares you. You would rather others not know in order to keep them from worrying.

This can create a vicious cycle, leading to anger, frustration, and feelings of helplessness or hopelessness. Things cannot get better if you don’t acknowledge what is wrong. If you find yourself overwhelmed you may benefit from talking with your doctor about what’s going on. They have access to great resources that can help.

I have news for you today… reaching out to others for help is one of the strongest things you can do. It means that you are standing up to unspeakable forces and looking MS in the eye proving you aren’t afraid of what is happening. Only the strong can do that. And you are strong.

No matter how weak you feel, no matter how beaten or how bruised you are, I promise you, you are more powerful than you can possibly imagine. You’re living with the impossible every day.

And like the turtle on the fence post… you have many people willing to help if you just reach out to skilled people who have the resources to put things into action for you. Are you on the fence post to learn to fly or to learn to repel down?

“Be strong.”

Don’t ever apologize because you are hurting

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Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing without a “woe is me” attitude and their response was just get over it? I’ve always thought that to be a strange response. Get over what exactly? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute-by-minute basis? “Oh, today I’m going to ignore the fact that my legs don’t work, get over it and walk across the room.” Really? And that’s supposed to make multiple sclerosis go away…ignoring it and just getting over it? Yeah… No, that doesn’t work.

Don’t ever apologize because you are hurting or needing help. It’s like being sorry for being real. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and invisible to the onlooker.

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

But unlike a broken arm, a chronic illness is ongoing. It doesn’t simply go away as time passes. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

I promise you that no matter how hard life is right now, you are not “too much” or someone that is weighing other people down. As I’ve said many times before, remember that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden whenever they can. Let the others go.

Above all, remember that you are loved. I know it doesn’t feel like that right now, but it’s true. An MS life can be remarkably hard. We’re not invincible. What one person can handle can be too much for someone else. It’s not about how strong or weak you are, you’re just a person trying to make your way through the craziness of an MS life like many others. Give yourself some credit for pushing on despite how intense things are right now. You got this!

I’m ready for a new year

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It’s hard to believe that a new year is here. It’s a new year, a new day, I have a fresh cup of coffee… but 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 still have multiple sclerosis to battle.

We have all come through some crazy moments and stumbled through them into another year. Maybe things didn’t go as you wanted, but you made it. Now, that’s something to celebrate along with all the fireworks, champaign bottles and shouts of Happy New Year.

I can see a lot of good in the bad. Yes, there were some not-so-good days, some terrible days, and some downright terrifying ones… but if I truly look, I can see past those times and find the good. Days that made me smile instead of cry. 2024 can be filled with those kinds of days too. Be determined to find the good in the days, weeks and months ahead… even in the pain and the struggle.

Multiple sclerosis is not an easy disease to live with, but neither is the disease of negative thinking. Choose this coming year to live each day looking for the good. Even if there is only one tiny spec of good in a day, choose to find that one spec and hold onto it. It will make your year ahead greater than you ever imagined.

Some people have asked me if I have a resolution for the new year and the only answer I have is that I plan to be a better person than the person I was yesterday. That’s my plan for every day. I make many mistakes along the way in life. Some hurt me, some hurt others, and some have no consequences other than the fact that things could have been handled better.

There are some things I have learned about life along the way. The key is the keep learning. That is the key to life. That is what makes things the most enjoyable. And that is what helps us to progress and improve.

  1. Perfection doesn’t exist, stop looking for it.
  2. It’s not your job to make everyone happy, cut your losses and go.
  3. Choose to spend your time with people who lift you up.
  4. Kindness makes you a better person. Be kind — always.
  5. Only you are the person who can change your life.
  6. Don’t sweat the small stuff. 99.9% of the stuff in life is small.
  7. Living with MS is not a competition. Really, it’s not.
  8. Don’t spend too much time in negative environments. You can drown that way.
  9. People may never understand your pain, don’t hold it against them.
  10. You never have to deal with more than one moment at a time.
  11. Getting truly organized can vastly improve anyone’s life.
  12. Revenge is for the petty and irresponsible.
  13. If anything is worth splurging on, it’s a high-quality mattress. You’ll spend a third of your life using it.
  14. Most of what children learn from their parents isn’t taught on purpose.
  15. Problems, when they arise, are rarely as painful as the experience of fearing them.
  16. Life is a solo trip, but you’ll have lots of visitors. Some of them are long-term, most aren’t.
  17. Wishing things were different is a great way to torture yourself.
  18. The ability to be happy is nothing other than the ability to come to terms with how things change.

Multiple sclerosis doesn’t take a break for the holidays

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Multiple sclerosis doesn’t take a break for the holidays. Oh, how I wish it did. I’ve already filled my refrigerator with tasty foods easy to prepare and have coffee ready to brew. My laundry is done for at least a week and the dishes are all cleaned I just need to put everything away in the cabinets. My Roomba is all set to clean the floors for me so everything seems to be going good… for now.

But I live in a world where the MS Monster is real no matter what’s taking place around me. My parents always told me there isn’t a scary monster hiding under my bed or in the closet, but I now live with one that follows me around every day and even growls at me from time to time. He’s an impatient bugger.

I think its main purpose is to instill fear in me… fear of the unknown, fear of increased disability, fear of being alone, fear of not having needed support. Such great amounts of fear that has the potential of growing and discouraging me from enjoying anything in life. The holidays aren’t as much fun as in the past. I do my best to find some joy even in the worst of times but it’s getting harder to find.

My family will be coming over which could be stressful, but I no longer get stressed trying to do too much. I actually don’t do much at all. I just work to keep the most needed things handy and have plenty of chocolate on hand for an emergency. Like Duct-tape, chocolate can fix anything.

I’m always ready for a battle. With MS I’m basically in a fight every moment of the day. I need to be strong and ready to fight.

I can’t stop myself from thinking about my former life. Was it real? I’m not sure. It’s so far away from my current reality. Sadly, my mind holds onto pieces of things that have long been erased. It has a tendency to bring on depression which can further weaken my health trying to convince me to give up.

I spent years convincing myself that monsters were only in my mind… that they weren’t real, but in this body I’m living with the MS Monster. I haven’t been able to shake him. I’ve worked hard to power through the fear. It’s not easy and comes with lots of lonely times. Most people don’t understand how painful and lonely it can get.

The best way to fight is to take it one day at a time. You are always taking care of everyone around you, but you need to focus on yourself right now. Stay positive and know that we are all cheering you on.

Never stop believing in your extraordinary inner strength. It has brought you this far and will guide you along the way. No matter what life has thrown at you in the past, you have survived it. You are so much stronger than you think. Keep on fighting and don’t give up.

I wish I could take this monster away from you. Remember that you are not alone in this fight. You are amazing.

When did society stop caring for the sick?

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There’s so much evil happening around the world that it makes trying to live a seemingly normal life an impossibility especially with multiple sclerosis added to everything going on. One thing that makes my world better is to not dwell on other people’s opinions about my own life. People who don’t actually matter to me. You know, like the stranger in line at the gas station, those eating at a restaurant that I’ve never met, the unknown person online with unfounded and outrageous opinions, even doctors and nurses that know my name but not really anything else.

If I wouldn’t invite someone into my house, I shouldn’t let them into my head. It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a picture of a bouquet of roses to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want to be recognized for something big by the world. They want the  press coverage and achievements hanging on their wall to show off their accomplishments to prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last longer than any 15 minutes of fame. After all, a hug is eternal.

You seem to see all the crazed SJWs causing chaos instead. How is that supposed to be helpful for anyone? Turning on the news is more depressing than living in my mobility hindered world. Don’t just assume because I’m silent and not asking for help, that I’m okay. Most of the time I get tired of always asking for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice. Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you. Sometimes I just want to be numb to it all but then I realize my thoughts, feelings and my MS story matters so I can’t hide away.

I have to focus on what I can control… giving of myself, my time, my efforts, my stories, and humor. The more I focus on my purpose, the less I give weight to what others think or say about me.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your life story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories. Yes, all pain is different. But there are things that we all share when the darkness comes and we feel hopeless.

You are a being. You exist. You breathe. You love. You fight. You hurt. You feel. And because of everything, because you exist, you matter.

Never let other people’s actions keep you from knowing how incredible you really are. You truly are an amazing person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME! Don’t you forget it!

My muscles are freezing up with the weather

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When I woke up this morning and I truly felt awful. The worst I have felt in a long time. I sat on the side of the bed for about 15 minutes trying to determine if I could even make it to my powerchair. I finally transferred but then had difficulties in the bathroom just trying to brush my teeth. I was struggling to put toothpaste on my toothbrush. I didn’t have enough strength to squeeze a tube of toothpaste with my right hand while holing my bush in the left. I decided to sit in the shower on the shower chair and brush my teeth in there because I have a toothpaste dispenser that can do all the work for me. No shower… just a good tooth brushing.

Just that little bit of work was exhausting to me. And besides it has been below freezing here lately so I can’t move to do anything in the cold. My muscles are all stiff and not helping me out. With me trying to conserve money I don’t run the heat as often as I normal would run it to keep me warm. I’m actually sitting in my lift recliner right now under a heated blanket just to stay warmed up. Electric blankets are amazing.

My hands have been giving me a lot of trouble lately. The stiffness in them just makes everything a quadrillion times harder. I’ve been having a difficult time holding onto anything. My utensils, my coffee cup and even a sandwich. I was able to put together a PB&J but with difficulty. I spilled a jar of jam in the process. As soon as I was able to get some jam on a spoon it would fall off. When I tilted the jar I couldn’t keep the jar steady and it came off the counter crashing the floor. It made a mess that I didn’t want to clean up but knew it would become a sticky mess if I didn’t. By time it was cleaned up I was too tired to eat it. Ugh, such is my life with multiple sclerosis.

Even though my muscles are giving me troubles, my bowels are too. I normally try to use a product like miralax daily to help me out but haven’t had any around so I’m actually going to try a tablespoon of caster oil to help me out since I have some in the cabinet. I have been told that it will loosen things up quick… and by the way my belly feels right now, I know it will make everything better once things come out.

Those are the things people don’t like talking about, but they are real and affect more people then you realize. Oh, and my mom came by the other day and brought me a couple of jars of daily vitamins… the gummy kind. I wasn’t expecting it but it made my day so much brighter. She said she just saw them in Aldi and thought, “Hey I need some of these. Let me buy some for Penelope too.” She’s so great like that. What a blessing. I don’t know if people understand that something so small as a bottle of vitamins can really make a big difference. Anything people can do for others to put a smile on others faces matters.

What if we let people know that they are loved. Not by spending lots of money but by sending a card, writing a poem, sharing a meaningful song, or doing something unexpected. There’s so much we can do even with MS causing us trouble.

I’m sending you my own encouraging note this morning. Take this crazy MS life a day at a time. More than anything, I want you to know that you are always loved. It’s the only thing that really matters. There is so much ahead for you. I know life can be hard, but you are going to make it. Keep hoping for a better tomorrow because tomorrow things could be better. Never stop hoping, never stop trying, never stop believing, and never EVER give up.