You didn’t cause multiple sclerosis in your life

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You didn’t cause multiple sclerosis in your life by the foods you choose to eat or not eat, by the supplements you choose to take or not take, by the DMTs you choose to take or not take, or even by the prayers you choose to pray or not pray. You didn’t do anything wrong or even live a bad life that brought about such terrible circumstances. That’s all just a bunch of crap… and it makes you feel like crap as well. No one deserves to be made to feel like that.

You didn’t cause it, can’t control it, and can’t cure it. It’s not your fault if other people leave you because of your illness or even because of how you are dealing with it. It’s not your fault that you are sick. Don’t even let that thought take ahold of your heart.

You are so much more than MS. It’s something you have been diagnosed with… and that’s all. It’s not your name and not who you are. Don’t forget that.

You don’t have to hide the fact that you have MS in order to make others comfortable and you don’t have to be an inspiration to others every time you share your life story. Many times you just want to scream and wish others could see just how difficult an MS life is. They never see the pain that overwhelms you, the despair that sets in at such inopportune moments, the hopelessness you feel at times, or even the tears you wipe away when no one is around.

You’re allowed to stay in bed if you can’t get up to do anything but go to the bathroom. You’re allowed to have bad days. You’re allowed to wish life was different. You’re allowed to miss the old you and all the things you used to be able to do.

But one thing you have to do after a short time of pity-party moments is remind yourself just how amazing you actually are. Take a break from life, take a deep breath and take care of you. That’s not being selfish, that’s caring and being kind. As airlines like to remind us, it’s important to put on your own oxygen mask before helping others do the same because if you run out of air, it becomes a lot harder to help anyone, including yourself. Treat yourself as a friend.

Home should be your safe place, your sanctuary. Consider filling yours with what brings you joy, whether it’s live plants, pictures of happy memories, or art you love to look at and remember to smile. It always helps.

You will get through the tough times and come out with a strength that you never realized you had. You’re getting stronger even right now. Hang in there. You got this.

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

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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!

You’ve made it this far in life with multiple sclerosis

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You’ve made it this far in life living with multiple sclerosis, so what makes you think you will fall short of your goals now? Whether they are goals of being able to care for yourself, goals of using your muscles to get around without burdening others, or goals of hanging on to sanity in a crazy mixed up world.

You have had your fair share of those who delight in foreseeing problems in your life because of MS. Those who actually enjoy criticizing any failures you’ve dealt with regardless of the cause, and freely voicing their opinions while dwelling in the comfortable safety of theory, unbelief and inactivity.

Words, words, and more worthless words have been used against you along your journey. When will you finally decide to believe in the beauty of who you are? When will you choose to laugh at all those silly careless words that have been spoken against you and toss those words away… rising above the shadows that loom in the distance?

If it is safety you want, then you will do far better by removing any distractions or obstacles in your way so you can follow your heart. Has experience not taught you this. Besides, warriors like us have always seen safety in a different light than those who try to make a living out of exploiting the disabled. Yes, those people do exist.

Laugh at the threats that come your way. Laugh and get on with enjoying your life. I do. Follow your heart and follow your dreams… you have great ones to follow.

A fearless warrior

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It makes me sad to think about all of the turmoil and chaos that is surrounding us in the world today. No matter where you are, you can’t seem to get away from it. It’s in front of you when you turn on the news, when you get online to try and find something worth reading, and even when you turn on the radio for a pick-me-up song. Such despair and uncertainty abounds.

I don’t have any answers for what is taking place in the world other than don’t react in fear. Fear is the worst thing you can ever hold on to. I’m not talking about fear of public speaking, escalators, or even spiders. Those are some my legitimate fears but not something that keeps me awake at night.

No, it’s deeper fears like war, famine, and even early death than will disturb any persons inner peace. I have found that I need to become fearless. Why? Because fearless people are not afraid to be afraid. They are able to take their fears as a warning sign and use them to get a better perspective of what is actually taking place around them… both the irrationally perceived problems and the real ones.

Every person experiences fear differently. You are not alone in this. Fear actually affects more people than the common cold. That’s because it’s a human experience. If I let fear rule me I would be cowering in the corner counting down time to my last breath. One thing you have to be mindful of is don’t let fear prevent you from actually living. That shouldn’t happen.

Fear reminds me that there is beauty all around in the shadows. It’s just hiding hoping to not be discovered. The beauty in the shadows is worth fighting for. No matter how bad thing can get, I will rise above the situation and be triumphant. I’m reminded that I’m a warrior regardless of what anyone else thinks. That I’m not going down with the ship. That I’m strong, mighty and capable of anything I put my mind to. And so are you. You’ve got this. Don’t lock yourself away in fear. Come out into the open, turn your face to the sun… and live. There is hope for a better day.

When it feels like everything is over, when the last bit of hope and light starts slipping away faster than you can chase it, it’s at that time you find you are able to gather enough strength to carry on. It’s that little voice you’ve been hearing in the back of your heart and mind to not quit and never give in. Listen to it. It knows more than you realize. You’ve got this. Become a fearless warrior with me.

Listen to your body and don’t overdo it

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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!

You are not imperfect because of multiple sclerosis

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All too often I hear people say they can’t do something because multiple sclerosis has caused their body to cease to function as it should. They see their body as imperfect because they are always doing something wrong. Their weakness keeps them from moving about as they need their body to function, their vision limits their ability to focus and maneuver their way throughout the day, their memory hinders their activities with failure to followthrough on much needed moments, and just showing up to an outing is too much work to handle so they decide to just stay home. That kind of life would wears on anyone.

I want you to know that you are not in this fight alone. Their are countless other MSers fighting along with you and leaving a trail of encouragement that will help keep you from being blindsided. We’ve got your back if you let us. I don’t know where I would be without such a great support system. It’s far better to try and fail than to never try at all.

I am reminded of a story about a woman who had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walk from the stream to her house, the cracked pot arrived only half full due to it leaking out.

For two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and felt miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, the cracked pot spoke to the woman. ‘I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.’

The woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side? That’s because I have always known about your imperfection, so I planted flower seeds on your side of the path, and every day while we walked back, you watered them.’

‘For two years I have been able to pick these beautiful flowers to decorate my house. Without you being just the way you are, there would not be such beauty to fill my house.’

You are filling the world with much more than you think. Don’t underestimate who you are, what you can do even when limited, and how important you actually are. I just happen to think you are the bee’s knees!

Ready for surgery

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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

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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.

I’m fighting a monster called multiple sclerosis

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I have learned more about myself than I ever thought possible because of a monster called multiple sclerosis.

I’m braver now even though I didn’t know MS existed in my life until I was in my 40’s. I fought through mind numbing pain, muscle weakness and tears. I fought it daily with a sword in my hand while yelling, “Hiyah!”.

I’m stronger now because I had to be. My choice was fight or give up, but I’m not a quitter. That’s just not a part of my DNA. So fight, I did. I learned how to use a cane, then a walker and now a wheelchair. I learned what foods benefit my body the most and what supplements help me to cope.

I’m happier now because I’ve discovered what really matters most in life. It’s crazy how that happens. You face down a beast like MS and discover a strength that you didn’t even know you had and that many things in life aren’t really that important anymore. Hold onto true friends and family, and let the other things go. You don’t need the extra baggage. It will only weigh you down and hold you back.

I stand taller, figuratively, because I am a survivor. Yes, there will be struggles and pain. There will be times I may be fearful of tomorrow or even of the next step I need to take, but I will push to the end and give it I’ve got.

Remember, you are not alone in this fight. The great Rocky Balboa said, “The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”

Come fight with me.