My Multiple Sclerosis Seussical World

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I don’t know what Dr. Seuss book I fell out of, but this weird little word world still has me tongue-tied and inspired by his insane imagination. I really need to create my own multiple sclerosis dictionary with all my silly lingo words that get created when I flub up my speech… which happens often.

Wheely Thingy – rollator walker
Snippycut – scissors
Urmp – perplexed
Waddlewampuz – walkking crooked
Fatone – big toe
Phogo – mobile phone

“I like nonsense,” Dr. Seuss once said. “It wakes up the brain cells. Fantasy is a necessary ingredient in living. It’s a way of looking at life through the wrong end of a telescope. Which is what I do, and that enables you to laugh at life’s realities.”

That’s how I want to live my life. Ready to zip-a-dee-zoot and head out the door for my day filled with the impossible, wacky, and unknown happenings in my MS world. Here are few of his nuttiest little nuggets that’ll help you feel extra Seussical while you supp on green eggs and ham as you go about your MS  filled day.

Ga-Fluppted:
In Hunches in Bunches, the line reads, “That mind of yours… is frightfully ga-fluppted. Your mind is murky-mooshy!” Reading it in context like that, it seems like that term is meant to be some kind of funky MS train of thought mixup. Seems about right.

Zizzer-Zazzer-Zuzz:
In ABC: An Amazing Alphabet Book! you are introduced to a three-Z creature “Zizzer-zazzer-zuzz”. It’s believed he has escaped from the zoo. He plays jazz on the zither and loves to eat Zizzer-Zoof seeds. I think “zizzer-zazzer-zuzz” can definitely sub in as the new “thingamajig.”

What wacky seussical words and phrases might apply to your MS life?

I can’t help but remember Dr. Seuss saying, “You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.” I believe that whole heartedly. The problem is that most of us underestimate ourselves.

You are capable of more than what you think you are. All you need to do is believe in yourself and hang on as you navigate this weird and wacky MS seussical world. Yipity-zoo-za-zay.

We are in a war against our bodies – this is multiple sclerosis

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There is something about having things left undone that sets me on edge. I don’t know why, I guess that’s just how I’m wired. Because the temperature outside is dropping I needed to make sure the air in my van tires were properly set. The cold weather always decreases the pressure so air needs to be added. Like most people, I have a portable air pump so I don’t have to go to a gas station or a car mechanic to pump them up. The temperature dropped to below freezing last night so I had to make sure everything was going to be okay in the coming days.

I was glad I checked them out. I spent about 20 minutes adding air to each tire. I checked my riding mower tires too while I was at it, so all my tires are good to go now. I won’t know it my van tires are properly filled until I go down the road. The sensors in the van will let me know if the air is still too low. Hopefully I filled them up without needing a bit more air.

There are a few more jobs I need to do around the house in the coming days. My to-do list has become filled with an unending list of must-do items. I try my best to tackle my list, but lately it has gotten bigger than I can manage. I’m going to have to get some help if I don’t want the coming winter to overtake me.

Dealing with all the things I need to do around the house doesn’t put MS on hold. When multiple sclerosis stepped into my life years ago and it made a jumbled up mess of my bodies makeup. My internal wiring has been a crazy tangled up mess since then. So the mess outside of my body makes an added mess to my insides as well. Either I’m battling a myline munching monster or it’s life itself complicating everything around me.

It feels as if I’m living in a virtual Trouble board game merged with Operation… My Pop-O-Matic die roller is broken and I have been sent back to start more times than warranted. My Operation doctor is still working to determine which nerves have been cut. Is it the train of thought nerve? The vision nerve? The speech nerve? The funny bone nerve? No one knows.

MS short circuits my bodies ability to properly function and creates chaos where there isn’t any chaos to begin with. Nothing ever seems to go as I want it to. My body seems to have a mind of its own and has adventures without me. I tell it to walk and it rolls around on the floor. I tell it to run and it sits down laughing at me. I tell it to sleep and it throws a temper tantrum. It just doesn’t seem to listen to anything I say. It’s worse than a rebellious teenager.

We are in a war, you and I. A war, not just against a broken pop-o-matic die roller or a faulty operation doctor. We are in a war against our bodies… if there is such a thing. There are so many things I used to be able to do that seem huge today and nearly impossible. Everything from laundry to running the dishwasher, from sorting mail to grocery shopping, from driving through traffic to maneuvering through crowds, they all seem extra hard, nearly impossible, and bigger than life.

You know what I have learned in this messy life we have? I have learned that it’s okay to have an unfinished to-do list. It’s okay to let the dishes sit alone in the dishwasher. It’s okay to not clean out the car, to slow down when I’m in a hurry, to enjoy a moment of quiet with just myself. Each minute is a gift we are given. We get to choose how we use them.

Take more care in how you use your minutes. They are precious and shouldn’t be wasted with worries and frustrations. If that means things don’t get done… oh well.

Use your minutes with care. Do something you love, something just for you, something that will give you a chance to simply enjoy the day. You are amazing and deserve some time just for you.

Don’t let multiple sclerosis hold you back

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I started a new home improvement project. My garage door needs new weatherstripping across the top and sides of the door. I researched the products I need and decided the cost is actually fairly low if I do it myself so I bought all the wood and screws needed.

Yesterday I started the first step in replacing the old weatherstripping. I bought four 1×3 boards that needed to be cut down to 1×2’s. I discovered in order to have a board exactly 1×2 I would have to cut them down myself. I laid the boards out in my backyard so I could use my circular saw to cut them down. I don’t have a fancy setup to hold the boards steady while I cut.

The bad thing is that my legs have problems maintaining my balance even while sitting. I set up a folding chair for me to sit in while I cut the boards, but I had trouble keeping the cut straight while I was working to balance myself. While I used the saw my legs kept slipping and I came close multiple times to falling over. My leg muscles are just very, very weak.

It was such a struggle. I was able to cut the 8 foot long boards about 12 inches at a time. I had to keep shifting the board down to keep on cutting the full length of the board. It took me so much longer than planned. After a pile of sawdust formed I had finished cutting them down. I felt so proud of myself. Next week I’m going to paint them white and a friend is going to come over to help me hang them around the garage door.

So far I feel so accomplished. I know there’s still a lot to do, but for me cutting the boards was the hardest part. I still have to pull the old boards off and sand the old wood before I can attached the new wood in the opening.

I think I make things hard for myself but I feel so good knowing that I am able to accomplish something myself. That’s the stubborn part of me. I have saved over $300 that I don’t have because I’m doing it myself. Multiple sclerosis has made it difficult, but not impossible. It’s almost like I have a challenge set before me and I have to prove to myself that I’m still capable. If I can’t do it, I will throw my hands up and surrender but I want to at least try before I give up.

Giving up like that does happen but so far I have been able to push through many challenges that MS has brought along. Falling over is not something I want to happen. It seems like such a small thing but it’s actually quite big. The time it takes for me to complete the project will take longer than it would have if I was stronger, but even the time delay is not going to hold me back.

Some of the most difficult things for me is doing anything that requires a steady hand. I can guarantee you that in your trying you are going to feel like a failure at some point…maybe even more than once or twice. But choose to be like Thomas Edison at those times. During his work on the lightbulb, he said “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

You will find a way that works too! Whether you find a better way to improve your life or a new way to do something that others tell you (or even you tell yourself) can’t be done, keep trying. Don’t give up on living. Don’t give up trying. Don’t give up no matter how impossible or difficult things may get. Just don’t give up. You will find a way that works for you.

MS bizarre happenings

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Sometimes I do things so strange that blaming it on multiple sclerosis isn’t even fair. Last year I came close to having a bathroom accident trying to make it to the toilet in time before an explosion wiped me out. When I got to the bathroom I barely had enough time to pull my pants down, quickly lift the toilet seat cover, and transfer to the toilet. I didn’t notice anything odd until I pushed the knob to flush the toilet and I could feel water gushing past my bum.

Well I did it again. I discovered that when I lifted the toilet seat cover I actually lifted the seat along with it so I was sitting on the edge of the toilet bowl itself. I came so close to actually falling in the bowl. After a quick shower and a giggle at the absurdity of the event, I replayed what I had done. Out of everything that had happened I blame my right hand for it all. My right hand is more of a paperweight than something of use so when I had lifted the cover I wasn’t paying attention to what I was doing. The motion of lifting something was all that mattered in the moment.

Will this happen again? Probably.
How can I avoid it? Keep the cover lifted all the time.
With the cover lifted, will my dog make more of a mess than I did? Probably.
Which mess do I want to deal with? I still haven’t determined the answer to that question.

Sometimes bizarre things happen with MS just because it exists. After all, we live with a strange, unpredictable disease. The strangest symptoms I’ve dealt with include:

  1. Feeling of an internal earthquake taking place inside my body.
  2. Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  3. Feeling as if water is dripping on me when I’m no where near a faucet.
  4. The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage.
  5. Feeling as if food is stuck in my throat when I haven’t eaten anything.
  6. Involuntary movements of my body like me accidentally kicking the doctor.
  7. Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  8. Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  9. Feelings of dizziness and being off-balance which accompanies nausea.
  10. Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  11. Dealing with 3-D illusions like when an object is moving straight towards you but it appears to be swerving and shifting in its path.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing these things can help ease the burden, even if only for a little while. You got this.

 

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.

Memories worth sharing

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Do you remember the last tear you shared with someone? It could be due to multiple sclerosis troubles, relationship difficulties, family issues or just a life is kicking your butt type of experience. No matter what it was, it’s not easy to forget. The hurts linger for hours and even days.

But do you remember the last laugh you shared? Those are memories you never want to forget. It could be something silly, nonsensical or even something that no one understood but it gave you a big laugh and maybe even a snort or two. LOL

I find myself laughing at some of the silliest and dumbest things and some people just don’t understand why I’m laughing about it. I can’t quite explain why I’m laughing other than it was funny.

Just yesterday I cracked up while watching someone walking down the street. Why? I’m not actually sure why other than in my mind they seemed to be trying to dance but kept missing the beat and every step was so off with everything happening around them. It looked more like a clown trying to put on a performance in a washing machine.

As you know, I used to be a street clown and would go out to bring smiles to people and encourage them to laugh and find the humor in life. There’s nothing better than hearing someone laugh. It always makes me laugh too. I wanted to bring joy to others.

There are too many frowns going around today. I actually think if I were to go out today dressed as a clown and start my mime routine, some people would be offended by my humor because as a society we have lost the ability to laugh due to political correctness taking over. Someone’s feelings are going to get hurt.. then they are going to sue you or dox you or do some other freakishly evil backlash thing to you.

Political correctness has killed comedy.

A friend of mine mailed a picture to me of me dressed as Doodles the Clown (my own clown name) and it brought back so many wonderful memories of years gone by. I like when that happens.

I can picture tough guys laughing because they couldn’t catch the invisible ball I was throwing at them and see kids smiling because I created a cute little poodle with balloons that they were able to wear on their head. Sometimes another person was the butt of the joke, but most of the time I was.

People always like to laugh at the mistakes of others. So as a clown I was a big mistake happening. I would trip and fall with a bucket of water but I was the one who got soaked with it, not the person I was aiming the bucket at. Or I would get paint all other my shirt when my pen exploded all over me while trying to share my autograph.

I’m sure you could interject your own stories of crazy moments that gave you a bucket of laughs, times when you’ve done something out of the norm that brought a smile to the people around you. Those harmless office pranks, goofy magic tricks and silly jokes you tell, they are creating a lasting memory that will bring others laughter and smiles for a long, long time. It will take your mind off of MS for awhile and all that’s going on in the world.

Create a memory today. Do something crazy. As someone once said, “Don’t take life too seriously. You will never get out of it alive.”

If you need a laugh today, I dare you to watch this without laughing. It cracks me up every time I see it.

 

 

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

 

When opinions become fact

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Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about multiple sclerosis and then declare to the world that you know all about it… both the cause and a cure. Many people are even pushing their own products as support for their theories. It’s all a scam for get rich quackery. After all who else can make money today but the fakers and the takers.

Big pharma has been a great example. Push a product with no actual facts as a cure and people will buy it by the droves. No proof needed. Just spout off a few unapproved statistics and you’re gold… rolling in it that is.

To those online experts that talk about MS as if it’s cured I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Uncle Fakealot and Dr Google. In that case, you need to fire Uncle Fakealot and even more importantly give up your university degree. 9 times out of 10 Dr. Google is WRONG.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period of time where people try to solve all of the world’s problems with bite-sized theories, unproven statistics and wacky medical solutions. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

No one is wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. Even doctors aren’t, they are all just practicing. That’s why their business is called a practice.

Don’t let anyone make you feel bad because they chose a different path than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this mess called life. Choose to find the smiles.

MS symptoms are more faithful than friends

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People thought my life was amazing. That I had it all: talent, creativity, love, a great job, a sense of humor, everything I could wish for, but you know, I realized early on that the fairy tale life wasn’t what I was looking for. I knew it wasn’t what it was cracked up to be and it wasn’t my dream… and that was okay with me.

But then multiple sclerosis showed up to try and put a kink in it all, it tried its best to steal my life, my joy, and any hope I had for my future. At first I have to say it did a pretty good job at it. It sent me into a tailspin and overwhelmed me at every turn I made.

I found out fairly quickly that it’s okay to be scared. It’s okay to cry, to be sad, to fall apart, and to break down. You’re only human. You’re real and facing something realer than real. MS is not something we can just ignore or wish away. We have to face it and look at all our options. Some may be unreachable or too expensive but through a lot of research and reaching out to different people, organizations and foundations, there’s a way to get help if you stay persistent. You just can’t give up hope.

Doctors scared me with all the unknown that was happening in my body and how much was still unclear about a disease that has been around for hundreds of years. Not until recently has any actual new info been discovered and realized about MS. For years many people have suffered and still deal from symptoms that newly diagnosed patients  are able to manage with a simple treatment or supplement. Still no cure… but there’s hope.

You never know when a symptom will show up and decide to hang out with you. Sometimes they are more faithful than your friends. Many people stop coming around when the going gets tough. Friends come and go. It happens all the time. It’s not because of you, you didn’t do anything to warrant that kind of treatment. You deserve so much better, so much more.

You don’t have to try to be strong when you have no strength to hold onto. It may take some time to make sense of all the confusing thoughts you have and all that you have experienced, but don’t ever stop fighting.

Statistics show my life will be shorter because of MS, but there is no knowing what tomorrow may bring or what my life expectancy will actually be. MS hasn’t put a period at the end of anything in my life. I’m believing for a comma. A comma means there’s a pause ahead with more to come, more to tell, and so on, and on, and on.

Enjoy the life you have. There is still beauty in the world. Look really close and you will see it in the most unlikely of places. Wipe away those tears and hold your head high today. You have a future filled with amazing possibilities.