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Yes, Multiple Sclerosis Is Real

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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

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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.

Today I didn’t grieve for my health issues

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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?

 

 

Multiple sclerosis doesn’t make life easy to manage

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Multiple sclerosis has been a constant struggle for me from the start of my diagnosis. It’s been progressing faster than I ever thought it would, even faster than the neurologist had predicted it would. It’s the uncertainty of what may take place tomorrow as my body continues to wear out that is the hardest for me to deal with.

I know I will never get any better than I am today. As my body declines I just have to do my best to not focus on how hopeless and lonely it feels to not have any answers as to how bad it will get. I chose to stop any DMTs that I had been using in the past mainly because the symptoms of the drugs made me feel worse than MS itself. And no one truly has enough proof that it will stop the progression… only that if MAY slow it down. But even that is debatable from person to person.

I just decided that living my life as it is now is more important than sitting in the waiting room at the neurologists office and racking up bills that I really can’t afford. It definitely doesn’t make life easy to manage.

One of the hardest things I face is when those closest to me question my decisions about how I’m dealing daily with MS. Some have an attitude that I’m causing it all myself by not taking any meds and others even doubt how bad it truly is. What am I supposed to do with that? I’m in a forever progression than is rolling downhill without a stop sign or guardrails.

When my heart gets heavy I tend to turn on some soothing music, curl up in the bed and let the tears flow. I allow myself room to collapse for a period of time to calm my soul. It doesn’t necessarily make the pain or depression go away. You can’t order your mind not to think or feel a certain way. We tend to make things worse for ourselves by adding a negative self-judgment to what’s already a difficult situation. That’s our inner critic interfering with our peace of mind.

I think everyone needs to make room for the uncertainties in life. Don’t feel bad for feeling. If sadness is there, it’s there. If worry is there, it’s there. Yes, becoming aware of a painful emotion can be helpful… it can loosen its grip on you. But it doesn’t automatically make it subside.

Accept without judgment that you’re feeling sad, angry, worried, etc. but add to it self-compassion for the mental suffering that accompanies the chaos. In other words, be kind to yourself. Comfort yourself when you’re feeling bad instead of blaming yourself for feeling that way.

The more you open up to your feelings, the more you can do what matters most to you, and the more you can enjoy the full richness that life has to offer, together with “bad” and “good” emotions… come as they may.

The goal of $550 is almost reached. Only $50 more and the website bills will be paid in full. Thank you in advance for your help.

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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!

Needing help for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give my blog and social media presence further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed my writings. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS. Because of the hopeless living with MS, I get up to face another day. Because of them, I give of myself and keep pushing forward. Because of them, I won’t quit. Living with multiple sclerosis can be lonely at times, but I will do everything I can to to bring a little sunshine into a darkened world filled with despair… and to show other MSers just how special and important they really are.

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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.

Navigating the world of multiple sclerosis

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I’m in need of a multiple sclerosis GPS. It’s a device that gives you clear directions on how to navigate the unknown world of MS, if that’s even possible, but it’s so unknown that even the GPS gets lost so I’m not sure how that will end up working out.

Not only will it tell me how to get there when I enter my destination, it will remind me why I went there in the first place. You have no idea how often that happens. I will circle the kitchen looking for something but forget why I even went in there to begin with. So frustrating. It’s an opportunity for me to just go back to bed. I need a nap after everything strenuous I do and thinking is strenuous.

At least I can have it turn on closed captioning to get written words with all the conversations I engage in. I use it while watching TV because many times spoken words don’t make much sense to me and having something to help me understand what’s being said really helps. I noticed that I tend to lip read even in real conversation with others… it helps.

An MS GPS will help me find the nearest bathroom when I need to go. Yeah! The only bad thing is that sometimes it doesn’t get me there fast enough to get my pants down and accidents happen. Just yesterday I pooped in my pants because I could get them down fast enough. At least the shower was right there and I was able to clean up quickly without too much trouble.

In the future, an MS GPS will be able to predict falls which would be so revolutionary. Ex. In 2 paces you will fall… so don’t go there. Rerouting. Don’t go there either. Rerouting, rerouting, rerouting…

Falls are predicted everywhere. The bad thing is that I went there and met the floor first hand. It’s just a lonely and unappreciated surface of the world so we hung out and I showed it some love.

Since my brain sends mixed up signals I think an MS GPS would be whacked-out. Oh, the wacky places we would go. Sometimes I just don’t know what I’m doing and at least we can not-know together.

If and MS GPS systems will make my work more productive, safer, and easier… good luck with that. MS has already robbed my brain of those capabilities.

MS bladder issues, when it rains it pours

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I don’t like days filled with constant surprises and uncertainties but living with multiple sclerosis is going to have its share of unpredictability. One day things could be going great, the next it could turn out to be an awful day. And sometimes it doesn’t even happen by days but by moments. Like Forrest Gump says, you never know what you are going to get… with a life of MS.

There are different things people can do for their bladder issues. It’s important to determine the type of urinary issue you have. Some deal with physical therapy learning ways to strengthen the muscles the bladder uses, there are medications to support incontinence, there are support devices that help train the bladder to properly function, but if those treatments aren’t working there are several surgical procedures that can treat the problem.

Ten years ago I had surgery to place a suprapubic catheter in my bladder to help aid in the emptying of my bladder. I no longer had muscle control of my bladder so I was unable to properly manage its usage. It took time to get used to but I was thankful for having it done. My bladder was finally able to be drained to an external bag rather than me peeing all over myself and life was great once again. It was a learning curve but it made life easier for me.

Over time my bladder had created stones causing drainage troubles. I had surgery to remove them but was still having bladder issues. The nurse was having difficulties each month removing the Foley catheter to replace with a new one. My body just seemed to think the catheter was a part of my bladder and would try to seal the opening making the removal each month painful due to it trying to attach itself to my body.

My urologist had suggested I have my bladder removed to alleviate the problems. After taking time to think about it and reading about having it done, I approved the surgery February of this year. It’s been 6 months and I’m so glad I had it done.

I had to learn how to attach my newly needed bladder pouching system which wasn’t too difficult to deal with. A stoma was created to properly drain the urine my body creates I just no longer have an internal bladder for it to empty into. My bladder is now an external pouch / bag. I just have to make sure I wait until early morning to change it out because that’s when I have better usage of my hands.

It can get comical when I try to change my pouching system after having a lot of liquids in my system. My stoma which controls my urine will shoot urine out in a quick stream and without the pouch in place it’s equivalent to me peeing on myself. I usual change it out in the shower so I can have a clean belly to work with. But like most people learn with their pouching system, it’s suggested to replace it while standing up so you can properly place it. But for me, that’s not possible.

My routine is to take a shower to clean myself up, dry myself off, place a dry washcloth over my stoma so if I pee out the cloth will catch it, put my robe on and transfer to my powerchair, make my way to the bed, get comfortable lying down on the bed, prepare my pouch to place on the stoma. Normally by that time I’m thankful I placed the washcloth over my stoma because I will have peed a little in the process of getting ready for the new pouch.

When I get the new pouch on, I’m ready for a nap but also thankful that I got it all done by myself… no nurse needed. Then I get dressed and normally make my way to the living room and rest on my new powerlift recliner. I normally have to change the pouch once every 4 days. Sometimes I can even go as long as 5 days before changing it out. But of course there are also time I have to change it much earlier due to not placing it properly and the pouch pulling loose from my belly much too early.

I know it sounds complicated, but what part of MS isn’t. I’m thankful I don’t have UTI’s anymore or pain like before with a Foley catheter so the pouch change is nothing compared to my issues before. I’m thankful for bladder surgery to remove my bladder. It’s not something for everyone, but it’s doable. As long as I can keep doing things one handed, I will be able manage it for a long time by myself. I’m too stubborn and independent to do it any other way.

Don’t give up hope on ways to manage your bladder issues. There’s always a solution. Maybe not the one you want, but one that will make life easier for your already complicated life. Bladder issues aren’t the end of your life and neither is MS. Talk with your urologist about things that may help you out. You got this.

I need to declutter my brain

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Rise up and work to overcome every obstacle multiple sclerosis throws at you. It is relentless and always trying to trip you up. It’s pretty good at it and has had years to perfect its chaos.

But when it comes down to it, you can accomplish anything you set your mind to. That never ending laundry will get smaller. Those dirty dishes in the kitchen will get cleaned up. That toilet that needs to be scrubbed… gets cleaned. So many chores, so much work, but all doable.

None of it will happen over night, but little by little it gets done. I would love it if magic fairies came down to help out, but they never do. I’ve been staring at a pile of laundry for 2 days and it hasn’t moved. But today I decided to get the work started. It hasn’t moved a lot, but the pile has gotten smaller.

Will it get done today? Maybe.
Am I concerned about the timing? No.

It will get done when it gets done… that’s all that matters. Even if it’s just one sock at a time, that’s progress. I won’t feel guilty for everything that needs to happen because there’s always something to do.

The more clutter that bounces around my house, the harder it is to decide what needs attention. As a result, I spend more time thinking about the tasks than actually doing them. It leads to stress and overwhelming schedules that appear unable to be accomplished.

I made a to-do list that can be easily shifted around but allows me to priorities and schedule things in a way that makes things manageable.

You don’t have to use some fancy app or journal to help you out. Any system you want to use is a tool that helps you to organize, prioritize, and review the things you have to get done.

Whatever you choose to help you organize your day, make sure it works for you and that it’s easy. It’s important to get things out of your head and onto paper so your can declutter your brain. We don’t need any more clutter messing up our day.

__________

What is causing you to put things down “for now”? Are you feeling too rushed in your everyday life? Is there never a chance to reset?

As you go through the process of clearing out your clutter, you will see that things become easier to put away when there is a home for them and that home is easier to access.

When you are tempted to put something down, ask yourself, Will I really have more time to deal with this later? Will I know where to find this later when I’m looking for it?”

Be kind to your future self and put it away now. Next week you will thank me. ― Kathi Lipp

 

Cracks in the concrete

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Hopscotch was a favorite game of mine as a kid. We would draw the board with chalk on the sidewalk and play for hours. There was one area of the sidewalk, though, where we didn’t play the game. A tree had been growing next to the concrete slab in the sidewalk, and as the tree grew bigger and bigger so did the roots which caused cracks and lumps in the sidewalk.

We would skateboard across the cracks and ride our bikes over them, but you had to be careful not to hit them in just the right spot or you would fall to the ground with a thud. I had my fair share of bruises from those kinds of falls.

Cracks in the concrete are reminders to me that you can fall apart no matter how strong you think you are. When I look back at my life, I had great expectations. My career was flourishing and my future plans were laid out. I was strong, achieving great things, moving forward, and then BAM… a crack showed up in my life called multiple sclerosis and changed everything. It knocked me to the ground and left me in a daze wondering “what just happened.”

MS changed everything. At first, I couldn’t believe what was happening. It was a hard thing to come to terms with. Then as the months went by and the progression continued to worsen, I realized that MS wasn’t simply going away. No amount of denial would force my life back to the way it used to be.

Change is hard. We all hate change, but life is constantly changing and it’s important that we learn to shift with those changes. It’s different when we have to shift our meal preference for the day or shift the places we go for vacation, but to shift your entire life due to a chronic illness…that just doesn’t seem fair. But I don’t look at life as fair and unfair. I see it as an opportunity to grow and become a better person or to sit stewing in anger and become bitter.

Am I going to let MS defeat me or am I going to allow something beautiful to grow from my life? Cracks in sidewalks can grow weeds or flowers and I want mine to grow flowers. It’s a choice we all have to make.

Don’t let that crack in the concrete change you to the point that you focus on the wrong things. Now is the time to change with the changes, but in a good way. MS will affect how you do things, but never let it change you into a negatively focused person.

There’s enough negativity in the world already. Find a little ray of sunshine and step into it. You may be cracked, but beauty can still come out of you if you let it. I believe in you. You are not a quitter. You are not defeated.

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Did you hear about the rose that grew from a crack in the concrete? Proving nature’s laws wrong, it learned to walk without having feet. Funny, it seems to by keeping it’s dreams; it learned to breathe fresh air. Long live the rose that grew from concrete when no one else even cared.
― Tupac Shakur