Posts

Words from my heart

/9 Comments/in /by

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.

Memory, forgetfulness and multiple sclerosis

/3 Comments/in /by

I woke up this morning to my pillow on the floor in the middle of the room. I’m not sure how that happened. I would have loved to have seen that pillow fight. It must have been a doozy…”take that – WHACK – and that – POW.”

I think I am closer to discovering why I’m always tired. It must be all the parties I’m having in the middle of the night with all the toys, dolls and stuffed animals in the house. We must have pillow fights too. I think they are the ones zapping my memory. This way I won’t be able to remember anything when I wake up.

Last night, though, they must have forgotten to clean up some of the evidence by leaving a pillow on the floor. I wonder if they are the ones that drink my coffee too. I will make a nice, hot, perfect cup of coffee and the next thing I know…the cup is empty and I’m sure I didn’t drink it. I’m absolutely positive of it.

I’ve had a few other things disappear too: my favorite sweater, my car keys, my cell phone, towels, and the TV remote. The other day I even lost the eggs a friend brought me. He had a dozen eggs for me since his hens are laying now. When he left, I couldn’t find them. What? How did I do that? I had a few minutes of egg hunting but I found them on my entryway table. I don’t remember putting them there.

Just the other day I was taking a shower, washed my hair but when I got out of the shower I had a head full of bubbles. How did I wash my hair and forget to rinse myself off? That happens a lot for me. Either I wet my hair and forget to wash it or have the suds still in and forget to rinse before I shut the water off. I do all my memory tricks to try and remember but I seem to fail at it most of the time. Sometime I even forget to brush my teeth while I’m in the shower even though the toothbrush is right in font of me. Ugh!

I was writing down a list of things I needed at the store yesterday. I had the list half written, got distracted and went into the bedroom to get my shoes but when I returned my pen was gone. Poof. It just disappeared. I had to get another pen just to finish my list. I still have no idea where that pen went but if I ever go shopping without a list in hand, things don’t go very well for me. I NEVER remember what I’m there to get and always return home having forgotten why I actually went there in the first place.

I think a lot of my memory problems are due to my lack of sleep. I wake up exhausted and go to bed exhausted. I know I’m getting closer to solving my memory problems and forgetfulness. I will let you know when I find out what is going on. I would love to have a few hours of real rest to get my brain a bit more organized.

Now, where did my coffee go? It was right here beside me. Seriously, it was. I’m not making this up. It must have gotten sucked into a black hole. I think I may be stuck in some weird space-time continuum. Maybe I’ll be the one to disappear next? Ahhhhhhhhhhh

Whether you win or lose, at least you know who you are

/3 Comments/in /by

I actually struggle with a daily life of multiple sclerosis and all the unpredictable circumstances that threaten to overwhelm me. Some days I struggle just to get out of bed in the morning. Many times I don’t feel like doing the things I know I need to do which means they don’t get done. Lately for one reason or another MS has been winning the struggle.

Like yesterday I kept putting off taking my trash out and now I’m too tired to even think about it. My motivation just jumped out the window and I don’t even have the strength to chase it down. Before I go to bed tonight I have to take it out because trash pick up is tomorrow morning. We’ll see how well that goes. I wish I had little helpers for days like this.

It’s been below freezing temperatures here so I think that has something to do with it. My muscles just don’t work well with freezing temperatures. They have a tendency to seize up and getting them moving takes lots of extra work. Sometimes work that my body can’t seem to find strength for.

Discouragement sets in and rising above the funk is terribly hard to handle. I hate when my emotions get out of whack like that. It happens more than people would believe. I can go from laughing to crying in one second flat.

When I think about the circumstances, people, and events happening around me they are all manageable when I take them in little bits at a time. I have to be cautious so I don’t get overwhelmed. MS hasn’t changed, life around me has. I need to stay focused on what’s important, I need to look out for myself and I need to not feel guilty or get upset when things don’t go as planned.

I know that’s not easy. It actually takes a lot of hard work, but work that’s worth it. Next time you feel drained or emotionally out of whack, remember that you have a choice. You can wrap yourself up in excuses and self-pity, or you can choose to reach out of yourself and find the strength you need to keep going and rise above your circumstances. You’ve got it within you to do this. I believe in you. If I can do this… so can you!

Listen to your body and don’t overdo it

/4 Comments/in /by

My favorite time of year is finally here. My lawn is getting greener and greener due to the rain we’ve been having. It is begging to be cut. I’m actually feeling good enough to run my riding mower and get out in the sun for my adventure of the day but it’s raining again this morning.

I can already tell it’s going to be easier to manage a riding mower without a suprapubic catheter urine bag to lug around. I’m really liking having a urostomy. I think it’s one of the best surgeries I’ve ever had. It’s so freeing for me. I can move about without concern of what’s coming with me. And the pain is finally over. Yippee.

Yesterday I pulled out my weed whacker to edge my driveway and sidewalk to get the grass under control. I was able to cut the time in half from what it took me last year. I moved about better. I use my old powerchair to ride around the property. I call it my powerlawnchair.

There are a lot of projects I want to get done this year but I know I need to be cautious and not try to tackle them all at once. I’m going to take them one at a time and give myself lots of breaks.

That’s the important part. Listen to your body and don’t overdo it. You know your body best. I have to remember to stop before it starts to scream at me. If it screams, I’m done for days and days.

My right side is still giving me difficulties due to increased weakness but I’ve gotten pretty good at doing everything left handed. Even when raking the lawn I actually rake it using my right shoulder and left hand. Odd combination but it works for me. Sometimes you just gotta do what you gotta do… no matter how weird it may look.

One things for sure, you will always find me out in my yard doing something to beautify things. My next project is to replace the solar powered lights around my front entranceway. It always looks so nice all lit up at night. I bought some replacement ones last year all ready for me to get out and tackle the task.

I love living by myself even when days are hard. I love looking out my windows at all of nature that surrounds my house as the deer and bunny rabbits trapes around. I won’t stop loving life regardless of how hard things get or how impossible life becomes. I will always find something to make me smile!

Ready for surgery

/14 Comments/in /by

My bags are packed for a 6 day hospital stay. Not my choice of a resort stay but at least I will be taken care of while recovering from surgery on Monday morning. I have to be at the hospital at 8:00 AM, Feb 6th. Surgery will take about 2 1/2 hours. I will write to keep you updated while in the hospital. Don’t know what day I will post something but hopefully you will hear from my by the 7th.

I have to empty my bowels on Sunday starting at 2 PM. I have to down 4 litters of Gavilyte-G. Lemon flavored… and stay by the toilet so I won’t make a mess rushing to the bathroom. Ugh!

For those who don’t know my urologist has recommended the removal of my bladder and a stoma made with a part of my small intestines to empty my urine into a pouch on the outside of my stomach area. I won’t have any more stones to deal with. No more UTI’s. No catheters to change. Just a urine bag/pouch to change. It’s supposedly not be painful once healed. My urine will just be an open flow outside of my body. Kidneys will work the same. Just no bladder.

I’m a little nervous about it and hope I will heal quickly and learn quickly how to manage dealing with a urostomy bag. I’ve met with the nursing staff that will be teaching my after surgery how to manage everything. They are really nice and have already given me some products to play around with to get a little familiar with what I will be doing.

Keep me in your prayers. I will be doing the same for you. Hugs…

You deserve more and better things in your life

/2 Comments/in /by

You deserve more and better things in your life than you realize even though multiple sclerosis seems to have gotten in the way of you being able to achieve it. You have it within you to be the leader of your own life.

Take a moment and think about how your friends make you feel. Do they lift you up, or do they bring you down? If you feel bad about yourself after hanging out with a certain person, it may be time to say goodbye. Believe in yourself enough to put on your crown and hold your head high. You can’t wear your crown with your head down. Wrong friends will do that to you.

Learn to love yourself. There will be times you will have to apologize and forgive yourself for not being kind to YOU. Sad to say, you are your own worst enemy. Give yourself a pep talk by speaking positively to the situation. Words have power. If you keep thinking you’re a failure, that’s exactly what you’ll become. If you keep telling yourself you’re going to make it, you eventually will. That’s because our perception creates our reality.

Be kind to yourself. Never apologize for living your life your way. To expect no difficulties in life, whether through your own actions or sheer circumstances, is unrealistic. Difficult times happen. Allow yourself time to really look at your situations for what they are. Develop a habit of self-reflection. Try to quiet your mind and get rid of your biases first.

Do you speak to yourself by putting yourself down? Think about it…do you call yourself names out loud? Names like stupid, idiot, or worse? My mom used to say if you don’t have anything nice or useful to say, don’t say it. That includes how you speak to yourself. Try this: before you criticize yourself, think of 3 genuine compliments you can give instead. You’ll start feeling great about yourself. Try to talk to yourself like someone you love.

Prepare for a journey.

A sleep deprived life

/3 Comments/in /by

My body has a problem with sleep. Either I have an inability to fall asleep even though my body is screaming for a much needed time of rest or I fall asleep at the drop of a hat without warning. Seems contradictory doesn’t it?

I’ve been known to suddenly fall asleep when I have company over and we are in the middle of a great conversation. It can be 10 minutes into the time together, my eyes wide open and I wake up without knowledge of what happened. It’s not because the topic was boring, just my body had given up responding and snoring seemed to be the best option. I call those times sleep attacks. It’s as if I’m sleeping with my eyes open.

But then there are times when I find it difficult to fall asleep and stay asleep. That’s the insomnia part of my day. I can wake up in the morning not feeling rested no matter how much time I spent in bed. No amount of added sleep seems to be helpful.

In life today, it’s becoming harder and harder to calm the mind. We are over-stimulated and overworked, and we find less time to do the things we enjoy because of the things we have to do.

I know the feeling of exhaustion that goes deep down into your soul. It’s awful. Having experienced it yourself, your view of sleep will never be the same again. When sleep comes, it will bring with it waves of gratitude because you know how rare it is. Don’t be too proud to not talk to your doctor about it. There are some drugs that help along with some supplements. Each person will respond differently so don’t be discouraged when you find that nothing works for you.

For me, extra doses of melatonin doesn’t work neither do other sleep aids. I’ve tried them all. I seem to be lucky if I get 3 hours of sleep at night before my brain kicks into overdrive and won’t shut up.

I think my bedroom needs to be set up in my old college physics class. Nothing put my to sleep faster. How I passed the class I will never know. I have no idea what life lesson I learned spending time there.

For now, cling to hope that restful sleep will come. Be gentle with yourself and encouraged. This too shall pass. Your body just needs time to catch up.

If you feel like you’re just surviving, that is OK. You are doing enough and I have no doubt you are doing a great job at it. Know that you are not alone.

It will take you by surprise but suddenly life won’t seem like such a blur. I still wake up with a song in my heart grateful of the life I have whether sleep deprived or not. Take heart sleep is coming.

 

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.

Show your support by going to this link

 

There’s an earthquake happening inside my body

/2 Comments/in , /by

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.

Show your support by going to this link

 

It Takes a Village to Navigate This Life with Multiple Sclerosis

/6 Comments/in /by

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just could’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up. You deserve to be happy.

Let your life shine through the chaos of MS

/3 Comments/in /by

When multiple sclerosis became a part of my life, just trying to come to terms with such a life altering disease was difficult. I went through periods of denial, anger, depression, why-me moments, and finally acceptance. Acceptance was hard. I had to re-evaluate my entire life.

Whenever something goes wrong in life, the first thing we do is look for someone to blame. Sometimes it’s God, sometimes it’s the people around us, sometimes it’s the doctors, but deep inside we have a sense of regret thinking we caused it by our own life choices. The helplessness we feel makes it hard to accept things the way they are. It breaks our heart. Were we going to be able to make room for MS in our life?

A person’s life can become completely destroyed when MS shows up. It has this way of flipping our world on its head, spinning us around and around creating dizzying chaos and confusion, and then leaving us to figure things out… many times all on our own.

That kind of whirlwind hurts. Some people may only experienced a slight amount of discomfort while others are left holding pieces of a shattered mess in their hands. It breaks you down no matter how strong you thinks you are.

If you look really close at my life, you will see the cracks and missing pieces from some of the difficulties I have been through because of MS. Things like increased progression, having to use a wheelchair, needing help for things most of the world takes for granted, ending a much loved career, financial struggles, and losing friendships.

My last MRI gave me bad news which has altered my future plans. There is moderate periventricular white matter disease, central cerebral atrophy which has progressed, over 20 mainly pericallosal as well as periventricular old burnt-out plaques, and a whole bunch of doctor speak that I don’t quite understand.

What does all that mean? MS is the reason for my trouble in learning or remembering things, having difficulty with problem solving, slowed thinking, depression, balance issues, and the reason I have almost non-existent trunk control which means I fall over easily even while trying to sit up. I weeble wobble in my chair.

My MS difficulties are much more pronounce than I expected at this time in my life but I refuse to be defeated. Even with all the issues I now face, there is still beauty in my life that shines through all the confusion.

You may be in the middle of a relapse heart right now. I know how badly it can hurt, but you are going to get through this and your life is going to become a thing of beauty. Don’t stuff the pain down deep inside trying to hide it away. Let the emotions out as they happen heal. Out of sight, out of mind doesn’t actually work.

Let it all out so you can heal. It takes time, but it will happen. Be patient with yourself and take it slow. Your life is a beautiful thing. Give yourself time to handle what is going on then let your life shine through the chaos.