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Sometimes a little change is all you need

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I decided to color my hair after years of allowing it to go grey. The main reason was because living with grey hair started making me feel old. I needed a pick me up moment and oddly enough coloring my hair did the job.

I’m back to being a redhead. The change very likely activated the ‘happy’ chemicals in my brain, like serotonin and dopamine, and accounts for the lift in my spirits. It’s like how a change in scenery is recommended for depressed people. My hairdo change has helped to lift my spirits. Now when I look in the mirror I feel more confident and happy.

I’m not sure if my hair will stay red forever, but right now, it’s given me a powerful push in the right direction toward feeling like the best version of myself. For now, I’m going to bask in my changed hair color and continue to find new ways to keep these feelings up even if I let my natural color grow back.

I’ve purchased a couple of boxes of hair dye to use every 4 months or so to upkeep the red color. It’s amazing how something like this can make such a difference. I wasn’t going to let multiple sclerosis define my mental well-being. At least I have some control over something myself.

I have to say I was in a better mood when I went to the store yesterday and even spent more time talking to the clerk and customers. Nothing big, but I know I was smiling more. That’s always a plus.

Don’t blame yourself for the bad days, and don’t despair when they come. Pay attention to your body’s cues, go easy on yourself, and know that, at the very least, making a small change here or there can help lift your mood for the better.

I don’t take good picture, but here you go… no makeup and all.

To Meme or not to Meme? That’s the question!

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I’ve put together a collection of my most wonderfully random and entertaining images and memes to keep in one convenient place. It’s a work in progress but hopefully it gives you a laugh and something to think about along with something to share with others to raise multiple sclerosis awareness.

I hope to add at least 2 to 3 images a week so makes sure to come back often. You can find the memes easily from the websites by following the link labeled “MS memes” in the top menu bar at positivelivingwithms.com.

When I first started Positive Living with MS I came across people offended by my sarcastic yet pointedly accurate MS images on topics that were a bit hards to talk about. As time passed the narrow-minded, prudish followers went away. I still meet people that don’t like my use of humor to talk about my life with MS. I find that in the humor there are some heavy subjects that will bring you to tears… but it’s all a part of a life with MS that needs to have more awareness.

As I’ve said many times, it’s better to laugh than cry about what we deal with. It makes the days brighter, the load lighter and the pain easier to handle, both emotional and physical. So laugh and don’t feel bad for it. It does a body good.

MS Facts Memes

Humor Memes

Inspirational Memes

MS Symptom Memes

 

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.

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’m not okay and that’s okay

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In a fast-paced world where abilities are praised and feeling inadequate or anything less than great almost always gets swept under the rug (or even frowned upon), it’s so easy to look at the next person and presume that they’re doing fine. In reality, we all have days when we aren’t feeling our best. Sometimes we just need to be reminded that it’s OK to take a step back and ask for help, to get support lifting the weight off our shoulders due to living with a chronic illness.

I wish I had a magic wand to make multiple sclerosis go away. To make the stress of living day in and day out with MS easier. To make carrying the huge burden it causes in your life lighter. To give back the time you’ve lost due to illness, unexpected disabilities, doctors appointments and endless worrying. No one likes living with pain, spasms, dizziness, fatigue, relentless headaches or even trying to manage the unknown daily. If you’re like me, you just want a moment of peace, reprieve, and a sense of calm.

When my friend was feeling her worst, I would tell silly jokes and send her stupid memes. I would do whatever I could to take her mind off of the situation. She needed to know that a good laugh could go a long way, whether she was healthy or sick. It is important to try and understand a sick person’s emotional state. Sometimes they don’t have an appetite to eat their favorite foods, they can’t sleep soundly at night or they aren’t as cheerful. These are common feelings a person with MS experiences.

I take comfort in knowing I am not alone in these feelings. We all feel detached, sad or even angry. Finding something to give you a little lift can help you remember that life isn’t always bad.

When I was young, I was taught that life is fun and should be lived to the fullest – one that must be filled with happiness. But as I grew older, I learned that life is not always easy. It becomes a battlefield we have to endure just to survive.

Some days, things don’t happen the way you want them to. They fall apart, and you start to worry. Worse, you feel discouraged and lonely, thinking that there is no other way to straighten things out. Life can pummel you with disappointments, challenges, and heartache, and your mood can easily shift from light-hearted to heavy-laden. You feel there is no hope for a better life.

I want you to know that it’s okay not to feel okay. It’s important when all hope is lost, to redirect your thoughts into a more positive, motivated and centered headspace once again. When you do, you find hope peaking out. Sure, it’s just words, but they’re positive words. And if you’re on the verge of giving up or struggling to push yourself to the next level, sometimes that’s just what you need. All you have to do is keep moving forward, even when it feels like it would be easier to just lay down and give up.

Today, be determined to see blessings in the midst of things that seem like burdens. Lift your spirits and turn things around. For future reference, I never get tired of giving out hugs, encouraging words, tough love or even smiles.

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.

__________

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

Feeling run down

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I had a difficult time this past week with my health. I had grown so weak and lethargic that I wasn’t good for anything. I didn’t have any strength to even eat. I couldn’t keep any foods down either and ended up dry heaving any time I attempted to swallow. I think I spent 3 days straight just emptying my stomach.

My family was wonderful and they filled my cupboards with some much needed nutrients since I wasn’t doing so good at keeping any of my basic foods down. My mom pumped me full off vitamins and had me drinking meal replacement shakes because they are so full of everything my body needed.

After about 3 days of working hard, I was able to actually sit up by myself. That was a miracle in and of itself. Today has been the first day that I have been able to actually take care of myself, by myself. I lost about 15 pounds during that time. I wear size 7 rings and they all fall off now… ugh.

The heat and humidity I’m sure isn’t helping me out even with the air conditioner running. It feels like I’m trying to move through thick mud, and think through thick fog. All I want to do is lie down and sleep – and then sleep some more, after that. I still can’t function normally because everything leaves me wiped out.

I get short of breath even when I’m doing nothing at all. My recliner has become my new BFF. I’m hoping to be able to actually sleep today. I know my body needs lots of it. I didn’t think this summer was going to affect me like it has. But I’m thankful for an amazing family that lives nearby because they have kept me going.

My mom did a load of laundry for me and my brother went to the store. All things I couldn’t do on my own. I kept thanking them for their help… even over thanking them. Never overlook the people in you life that are willing to help. They aren’t that easy to find but are keepers when they show up.

Today I’m just going to sit quietly in my recliner, kick my feet up and veg. Even though my head is spinning and my appetite isn’t quite right, I’m going to eat what I can because my desire is to be healthy and enjoy my life. My first step to healthy living is gratitude. Thanks to all my friends who care for me, pray for me and laugh with me. You are my rock. I need you more than you will ever know.

Do you see me?

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That’s it. I don’t think I can take any more. I have worked and worked and worked, yet, things seem to just keep going wrong. It used to not be like this, but now I’m the person they don’t see. I stare out my window into the world and I see them. So many lives oblivious to my pain, to my illness, to my struggle with multiple sclerosis. I wish to be seen, to be known and understood. I sit here in my house, alone and with my heart torn out. The sorrow is deep.

The masses see my wheelchair and so they should, but they don’t see me. I’m not invisible. I’m not broken. The loss of my mobility is crushing. It makes me long to shout out “Hey, I’m here, I’m alive, Look at me.” But all I can do is stare out the window.

I know I’ll never be the same. I know I’ll have to move on. But today it hurts too much. Today I need to just sit and stare out the window as I contemplate my life.

Today I feel numb. I feel anger. I feel sorrow. I feel confusion. I feel the loss of my active life that has been pulled into the darkness. The unpredictable waves of grief wash over me like a tidal wave. I hold onto my faith and hope for a better day tomorrow.

I know I need to let the grief happen even though it feels like I won’t survive it. How can something you can’t see hurt so badly? That’s the problem with MS. It’s not visible and it makes you feel alone.

I not only lost my mobility, I lost the joy of going places and taking part in the world around me. I lost being able to do as I please without a care in my heart to hold me back. I’ll never walk down the street to see my neighbor. I’ll never walk to the mailbox to get the mail. The loss is deep and wide like an ocean and I’m doing my best to tread water when you would expect me to swim.

It is in these times that I need to stop, take a step back, take a deep breath, and tell myself, “I’ve got this!” I need to hold my head up from my sorrow. And so I do. Now I sit on my couch and rest to recover from a time brought forth by my MS sorrow. I wish you could see me and enter the pain with me. I know I’m not the only one feeling this ache in their bones.

If we are honest for a moment… life isn’t easy. It can be really hard at times. But I want to encourage you, you can do hard things. We all walk through storms in this life: sickness, financial troubles, losing a job, losing a loved one, and more. It’s tragic and terrible, but even some of the most rewarding things in life can be hard… like running a marathon. Not to mention, even the little everyday things, like doing the dishes, having no gas in the car, running late, and spilled coffee, can be so hard and frustrating on days where everything seems to be going wrong. So how are you supposed deal with all of this?

Today I want to encourage you that the words you speak have the power to change your mindset. My mom always says “You can do hard things.” And in the midst of the hardship, remember you can do hard things and it too will pass.

Sometimes I think, what if I told myself words like, “you cannot do this, it is too scary.” Naturally, those are easier words to say but they don’t bring anything good to your life. Living with MS is hard, frustrating, scary, uncertain, chaotic, and depressing. What you are going through is hard. But you can do hard things, my friend.

I want to challenge you to be more aware of the words you are saying over yourself and others. Are they words of life or death? I want to challenge you to embrace this messy, hard life and face it head on. And just know, whether it is a moment of hardship or a season you are in, this too shall pass.

All aboard the multiple sclerosis express

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Ladies and gentlemen, this is the non-stop flight to a life with multiple sclerosis. On behalf of the Captain and the entire crew, welcome aboard.

In preparation for takeoff, please ensure all negative attitudes are properly stowed in an overhead bin. Please take your seat and fasten your seat belt.

At this time, we request that all stress, fear and worry be turned off for the duration of the flight, as these items might interfere with the central nervous system and communication processes of this aircraft. We request that all canes, braces, walkers and wheelchairs be secured until we have reached a stable altitude free from turbulence, wobbles and unsteady movements. We will notify you when it is safe to use such devices.

We remind you that this is a non-sleeping flight. Sleeping is prohibited, but we do have endless TV shows, movies and documentaries available for your viewing pleasure.

There are several emergency bathrooms on this aircraft. Please take a few moments now to locate your nearest bathroom. In some cases, your nearest bathroom might not be close enough. If you need to go immediately, I suggest you move quickly to ensure no accidents happen.

Blood tests and lesions are always being monitored. In the event of a relapse, an MRI machine will automatically appear in front of you. To start the scans, your head will be secured to a table and you will be inserted into a tight, claustrophobic tube. Although the machine is loud, you will be allowed music of your choosing to help drown out the sounds. Keep perfectly still without sneezing, scratching your nose or coughing until a uniformed attendant advises you it is all over.

In the event of an emergency, IV steroids are available and will be administered as needed. Be cautious of the metallic taste that will occur during this process. Sucking on hard candy helps so be sure to have a few in your baggage.

Meals will be supplied based on your needs. Dietary restrictions are adhered to. If you require texture friendly food we have a selection of soft foods that makes challenging meals easier to manage. Getting pre-portioned meals that you can pick out allows you to tailor your selection as needed.

We will hit turbulence along the way, but rest assured it won’t last. We will eventually pull above the storms and enter sunny skies. I expect good attitudes for our trip.

If you have any questions about our flight today, please don’t hesitate to ask one of our specialists. Thank you for flying the Multiple Sclerosis Express.

I seem to be allergic to multiple sclerosis

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The immune system is made up of a complex and vital network of cells and organs that are created to protect the body from infection. Their entire purpose is to defend the body and keep bacteria, viruses and fungi out, and to destroy any infectious microorganisms that try to invade the body.

Growing up I never had an allergic reaction to anything. Food, bug bites, hot or cold weather, animals, dust mites, pollen, or drugs. The only thing I was allergic to was poison oak. It always seemed to spread by me just looking at it. I didn’t have to actually touch it… or in my childs mind I didn’t. Once I had gotten such a bad case that spread all over my face even causing my eyes to swell shut for a few days. After a visit to the doctor, some meds and lots of calamine lotion, all was well.

Since multiple sclerosis has taken up residence in my body, I have discovered that certain foods cause me to have increased symptoms like expanded weakness, spreading of numbness beyond the normal residual symptom from my initial MS troubles years ago, visual disturbances that have a tendency to keep me from being able to properly read emails without double vision, dizziness that meclizine doesn’t seem to help with. For me, over time, I have discovered those foods and know which ones to avoid. Each person has to find their own foods to avoid. It will always be different person to person.

I have also discovered my difficulties in balancing. I fall over trying to sit up. I can no longer do as my mom always said… ‘sit up straight and keep your elbows off the table.’ I simply can’t seem to do it unaided. I have cognitive problems too unlike anything I had before. I used to be able to read an in depth computer manual and be able to code computer programs based on what I had read without difficulty. Now I can’t put a line of code down without constantly looking at every cheatsheet available.

It just seems like every new symptom shows up out of nowhere and has a tendency to hang around for a long, long time… sometimes forever. I have also discovered certain drugs now give me an allergic reaction and I have to be watchful of them. My body just doesn’t seem to want to cooperate with my own body.

One thing I told the doctor is that I found I was allergic to ice packs. They always turn my skin red…(grin). I can’t get through a summer without them. They help me survive the heat. I’m also allergic to a lack of humor. There’s not enough smiles, giggles and laughter in the world of the chronically ill. You do know that it’s okay to laugh, don’t you?!

Over the years I have found that I need to take things slow and listen more closely to my body. It always seems to talk louder than I wish it would but thankfully it speaks up. Sometimes it’s the only reason I feel as good as I do. My body isn’t perfect. I fall down too much, pain visits way too often, confusion happens and brain fog seems to have taken up permanent residency. And although I wish life was different, it’s still mine and I refuse to give up.

You can’t give up on your life either. MS makes things complicated but not impossible. Impossible says it all… I’m possible.

Just like you. You’re possible too.