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Do you suffer from comparison-itis

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Comparison is one of the greatest diseases in this world and we are taught to do it from birth. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children.

This is the greatest disease because everybody is born unique, and comparison is simply not possible. Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible.

When a person compares someone who has multiple sclerosis with someone that has another illness… they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the worst experiences is when you share your multiple sclerosis journey with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you go to a doctor and take meds, you are doing it all wrong? That you wouldn’t have the struggle you are having if you would just do things their way? That if you only ________ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works. When someone does the comparing like that, they have fallen victim to the greatest disease in the world… comparison-itis! But take heart, there is a cure… an adjustment of the attitude works 100% of the time.

Stop comparing, stop complaining… and start loving, caring, and nurturing one another.

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 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.

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.

When you gotta pee

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Sometimes I laugh at myself, like yesterday when I accidentally dropped freshly ground coffee all over me and the kitchen floor. Laughing about it was so much better than crying. Besides, tears mixed with coffee grounds is therapeutic, at least it seemed to be for me as I laughed vacuuming it up. All I kept thinking was spilled ground coffee sure do suck! haha

I have accidents all the time. I trip, drop things, fall, misplace items, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with multiple sclerosis. Some of us have more than others, but they seem to just be a part our life now.

Since surgery at the beginning of the year to remove my bladder, a stoma was created from a section of my small intestines to allow my urine to be managed. I wear a pouching system that is attached to the stoma around my belly area. Even though I can’t pee in my pants like before, I still have accidents. Not the oops, I peed in my pants kind, more of the oops, the pouch adhesive has loosened causing it to leak unexpectedly all over me.

I would much rather have a leaking pouch that I can tame by holding my hand or a cloth over it until I can remove it and replace it with a new pouch than face a flood because I wet my pants. I have a bit more control over a leaking pouch than I ever had over my bladder. When I had to go, I had to go. I had no control over the muscles that made my bladder function.

I’ve gotten really good at changing my urine pouch and can have a new one attached to my stoma in about 10 minutes. For me, I change the pouch system about once every 4 to 5 days. It took time for me to get used to changing it and a lot of practice trying out different samples sent to me from the companies that make pouches, but I finally found the ones that seem to work the best for me.

One good thing about my life now is that I don’t have to rush to the bathroom every couple of hours due to a faulty bladder. Now I just routinely empty my pouch as it fills up. No more accidents in the middle of the store when I’m out and about and no more sleepless nights because of multiple bathroom trips to go pee. I normally attach a night bag to my pouch so I don’t have to empty it while I’m sleeping.

Accidents are going to happen no matter what I do. Let’s see if I can make it through the day today without one, but if I do have one I will make sure to find some fun and joy in the process. I hope you are able to do the same thing. Don’t take life too seriously.

Remember that you weren’t given an instruction manual along with multiple sclerosis. You can only do the best you can with the information you have at the time. So, don’t be so hard on yourself. You’re a work in progress.

I can’t wish MS away

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I feel like I was run over by a Mack truck last night. I’m exhausted, in pain and have become frustrated at dealing with multiple sclerosis every second of every day. I’m not really surprised though. I have sort of prepared myself for the unexpected. It is what it is… is what I tell myself all the time.

I can’t wish MS away or even think positively enough for it to disappear. Some people have said dealing with it is just mind over MS, haha. I doubt they have had any issues with MS to overcome or even MS itself. It frustrates me when people spout out how to deal with a problem that they’ve never had. Drive-by Antagonists need to get a new hobby.

One thing MS has done is taught me that I’m tougher than I thought possible. When something goes wrong, which it will, I tend to bounce back…not fall apart. I celebrate the small victories that I have.

Yesterday I had the energy to collapse several boxes that my new recliner came in. I used a box cutter (carefully) to dissect the boxes so they would be able to be picked up by the local garbage collection service. I think in doing so my body is paying me back because I overdid things a bit. I’m terrible at not listening to my body and always regret it later.

So far this morning I have been able to wash my face and make a cup of coffee. That’s a great start. I am not planning much for the day so I have time to recover. I know that sounds silly. Collapsing boxes is no big deal some would say. But my body says differently.

I’m not going to sit in shame for resting. I’m going to watch something fun on TV and rest in my new chair. It has been the greatest investment I’ve made in a long time. I like how it will stand me up almost entirely and allow me to easily transfer to my powerchair.

I’ve got a new project I want to start in my yard but I will wait for another time. I will just plan it out so when the time comes I will have everything I need to get it done. I just need to take my own advice and listen to my body when it’s talking. It really knows what it’s talking about.

To those not living with a chronic illness

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Whoever you are, I fear you will never learn the injustices people living with a chronic illness endure all because they are facing the unknown and the unseen as their body is destroying itself from the inside out.

I fear the gifts and strengths a disabled person  carries within them will be dulled before they are able to share them with those who need them the most.

I fear you will cease to help a disabled patient in need because your own life is more important than the needed medical equipment, meds and even vitamins or supplements that would greatly benefit their lives.

I fear you will never know what it’s like to be disabled, abandoned, homebound, and not believed when sharing their troubles with those closest to them who should be their support…but aren’t.

I fear you may fail to see the worth of the disabled because it’s not a popular thing to do and it disrupts your day too much.

There’s nothing I can do to wake people up. Many won’t read this and others will simply discount it as nonsense, but one thing I know is that regardless of what troubles happen in my own life, whatever disabling symptoms arise and consume my day, I won’t quit. I refuse.

Words from my heart

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Some people live their lives in the Land of Clichés and Memes. What are they you ask? Well, a cliché is a phrase or opinion that is overused and betrays a lack of original thought and a meme (rhymes with team) is a humorous or thought provoking image, video, piece of text, etc. that is copied (often with slight variations) and spread rapidly by Internet users.

One thing to note…technically all clichés are memes but not all memes are clichés.

I have noticed a trend in people using phrases when talking about multiple sclerosis. Words that once were amazing, but have become so common that they no longer provide the strength they originally carried. Things like:

It could be worse.
Time heals all wounds.
Everything happens for a reason.

Personally, when I’m feeling bad and having a terrible time with MS, I’m not comforted with statements like: I have MS but MS doesn’t have me. That is one phrase that has become so overused that I don’t even listen to the person sharing it. It’s not comforting to me. It was cute the first time I heard it, but now that it has been so overused and worn out, it gives no benefit to my life.

The reality is…sometimes, MS does have me. Sometimes, I have really crappy days. Don’t get me wrong, I totally believe in staying on the positive side of things and looking for the good in any tragic situation, but there are times when I need space to think and grieve, and to decide for myself how I want to move forward. I don’t need words carelessly tossed out as a solution by someone who’s not even listening to the words they are throwing out.

Seriously, if you’ve ever shared a cliché or meme in response to someone dealing with a relapse or sitting in the hospital awaiting test results because you want to bring comfort to them, I urge you to never do it again. Why? Because in a moment of tears, they need time to process the chaos and would get more benefit out of a hug than a worn out set of stale words.

Why not just use your own words? The best thing anyone could say when times are at their worst are words from the heart. And for many, saying nothing at all, simply being there is all a person needs. Standing with them in the pain and holding them up when they have no more strength left to stand on their own… that does more than worn out words.

Instead of quoting from something you’ve heard over and over again, thoughtfully put together your own words filled with care, understanding, sincerity, and lots and lots of love. That’s what brings comfort. That’s what helps bring smiles to a face covered in tears. Well, that and maybe a joke or two to break the moment with a laugh…and some chocolate. Chocolate always helps.

There’s an earthquake happening inside my body

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I woke up this morning to an earthquake.  The entire room was shaking. No wait, it wasn’t the room. It was just ME. My normal hand tremors were happening in other parts of my body as well. My legs, my arms, my head…everything was shaking. It seemed like all of my nerves were on a quadrillion-trillion dose of Red Bull or had way too much caffeine.

Much of it has calmed down now after taking a few muscle relaxers and some pain meds, but I still have the feeling of tremors even though I can’t see them. I have a weighted bracelet that helps to calm things down in my hands but not much is helpful to control the other parts of my body. It’s such a weird feeling too. It’s almost as if my body is trying to jump out of my skin. Now, the only problem is, the muscle relaxers and pain meds make me sleepy. We’ll see how well that goes today. Sleep or tremors. Not sure who is going to win this battle.

It’s so hard to get through a day when you spend a majority of it fighting your own body. When you have to think just to take a step or concentrate in order to move your body in the direction you want it to go. Most people just don’t get it when you try to explain what’s happening. It almost makes you feel as if you’re going crazy.

Nobody should have to think this hard to do the things that everyone else can do without even thinking. I’ve already spilled my coffee trying to drink from a no spill cup, tossed my grape jelly toast on the floor trying to take a bite, and kicked the coffee table for no reason at all.

Our bodies have been trained since we were toddlers to move and function: to walk, pick things up, sit down, stand up, reach, and even do the happy dance. But when those wires get crossed or damaged, and the message transmitted from the brain to the rest of the body becomes disrupted, there’s no telling what might happen. We may want a certain leg to move and it won’t, or need a hand to function properly and it refuses to obey, or need a tremor to stop shaking everything in sight without success. But when sensation is crazy too…that’s an entirely different level of weird.

When it feels like water is dripping down your cheek and you find yourself constantly checking just in case it’s real, or when it fees like bugs are crawling across your skin and yet there’s not an ant to be found, or when you feel millions of needles stabbing into your hands and feet, or when it seems like every muscle in your body is twitching and on edge…all happening inside your body where no one else can see. You begin to feel like you are losing it.

I have been known to kick the coffee table, throw things across the room, drop my drink and even hit people…all due to multiple sclerosis. At least now, if someone says something stupid and I smack them upside the head, I have a valid reason for my actions. “Oops, sorry…that was MS, not me!”

It’s hard dealing with an out of control body,  but life goes on and nothing ever seems to make sense anymore. This unseen monster is too weird and unexplainable. Life changed without warning and I can’t send it back.

 

I’m Raising $500 for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give this blog further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed reading my blog. 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.

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How to handle living with multiple sclerosis

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We live in a world and society that is prone to complaining and arguing. Think about it… we are discontent with our jobs, our home, our TV, our car, our families, our life, even our health. For some people it is hard to find anything that they are content with.

We complain about our work schedule, forgetting an appointment, the doctor’s office wait time, prices at the store, our boss’ attitude, and other people always complaining. We seem to be discontent in just about everything.

When we meet others with multiple sclerosis we discover we have a common animosity. I went to a meeting with other MSers after I was diagnosis with MS and I felt like I was at an AA meeting…

Hi, I’m Penelope and I have MS…  then I spent the time complaining about my struggles along with everyone else. Complaining just seemed to be a part of the culture. We all complained and in our complaining we bonded together.  I noticed that bitterness and complaining was contagious. When I left I felt worse than when I arrived.

We live in a society not content with anything. We get a new phone that we are all excited about until a newer version comes out. Then we are back to being discontent. Our society works off discontentment. This world is so twisted.

I decided I was going to change that kind of thinking around me. I was going to choose to be thankful instead. Do you know what happened? Did my life get better? Did MS go away? Did my pain cease to exist?

NO.

But what happened was my life was happier and less stressful. I found the good around me that I had overlooked and missed out on. I found true friendship. I found support. I found I was able to do more than I thought I could. I found joy… all in my thankfulness.

Here in the USA it’s thanksgiving season… don’t spend it complaining. Allow yourself time to vent and to talk about the problems you are facing but once you let it all out… let it go. Share your complaint in a kind way that is seen as helpful and not critical. It’s so productive when we work together.

Complain less, live more. Your life is what you make it. Fill it with gratitude.

Bladder issues with multiple sclerosis

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I have had an SPC (suprapubic catheter) for over 7 years now. It’s a device that is surgically inserted into the bladder to drain urine because I can’t properly urinate on my own. At the beginning of my multiple sclerosis journey I was having problems being able to void my bladder. I lost muscle control which caused me a lot of problems. My MRI showed lesions on my spine where the bladder is controlled. They cut off my ability to use my bladder muscles.

I used to say my bladder was conspiring against me because as soon as I would get home from work and opened the front door, my bladder would let loose and I would have a puddle in my entryway to clean up along with myself. When the urologist suggested an SPC I thought that was the answer to my problems. That is until I discovered some issues with living with an SPC. No one tells you about that.

What I discovered is that sometime the catheter doesn’t drain properly because of bladder stone, increased sediment in the bladder, unwelcome UTI’s and of all things, a faulty catheter. Yesterday I called home health because my catheter was clogged and wouldn’t drain. Every time I drank something, within 15 minutes I was uncontrollably peeing on myself meaning the catheter wasn’t draining as it should. I had a load of laundry after two days of fighting with the clog.

When the nurse came to change my catheter I was so glad because I needed my coffee. It’s crazy how that was my main thought. Not the problem with cleaning things up constantly or running out of clean clothes or even a clogged catheter, but coffee. As I’m writing this I’m enjoying a fresh cup of coffee. Ah, yum! I’m glad a catheter change worked.

If you would have told me MS had this kind of trouble I wouldn’t have believed you. I thought a catheter was a good thing, but I have noticed it can be a blessing and a curse. That’s true for a lot of MS symptoms. I always thought my tremors were a curse but I discovered that when I uncontrollably kick someone or slap someone that says something stupid, I can blame it on MS. Oops… sorry, that was a spastic moment.

Or when I forget an important event that I really wasn’t interested in. Oops… sorry, my brain doesn’t work right and I forgot. (grin)

Or when I can’t remember a show that I previously watched… that’s just my reason to watch it again and be surprised at the outcome.

There’s always a way to look at things differently. Don’t take a life with MS too seriously. Besides smiling is a lot better than a frown. It helps your immune system to function more effectively. It is thought that when you smile, your immune function improves because you are more relaxed. So smile! It does a body good.