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An MS life isn’t so simple

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Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jelly and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

Life won’t be easy with MS but it’s worth it

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When you get diagnosed with multiple sclerosis it seems like the world has come to an ended. For me it was something I knew nothing about. I had gone to the hospital because I couldn’t feel a good portion of my face, my vision was blurred and my right leg was going numb. I had an MRI and a spot was found on my brain that concerned the neurologist but he couldn’t determine what it was. He said I needed to be checked out in a few months to find out if I had a tumor or what was happening.

At that time I was in the middle of moving to Florida so I was hoping it was something that would just go away and my move would be uneventful. When I got to Florida it was 3 days later and I had lost vision in my left eye, was in a constant state of vertigo, the numbness of my right left was significant and had migrated to my right arm, was in the beginning stages of an MS hug and my world was coming to an end for sure.

I called a neurologist as soon as I arrived in Florida and amazingly they had an opening for me to come in. A second set of MRIs were done along with a spinal tap and a few days later the neurologist had the results. He sat down with me and said, the MRI shows over 6 spots in the brain and over 10 in the spine. I’m sorry to tell you but, you have multiple sclerosis.

I wasn’t given any information from the neurologist about what MS is, what can be done about it, NOTHING other than he said to me, “You will probably have a benign case.” What? Then he said, we will start you on Rebif and see how things go as we try to slow the progression down. That was that.

I was left on my own to figure things out and because I went to the doctor by myself I didn’t know what to ask or what to do. It was such a horrible feeling to do everything by myself. I left in a whirlwind and numb to the core.

Afterwards I dedicated myself to digging for answers and empowered myself through asking tons of questions even the hard hitting questions. After going to support groups and leaving feeling worse than when I arrived, I decided to reach out to others online with encouragement and my own odd sense of sarcastic humor rather than doctor speak and AA meeting type get togethers. I figured if I’m feeling lost and out of place then others may be too and we all just need to know that we aren’t alone. That was 10 years ago and although MS was well known, it wasn’t known enough by the public or even the doctors that are helping people with MS to cope.

It’s true that life won’t be easy afterwards. I prayed a lot and cried a lot but I made it through with a strength I never knew I had. Isn’t that weird how that happens? You don’t know you have something until you need it… and then, there it is.

You can get through anything life throws at you. I know you can. When everything crumbles down it give you a chance to build something spectacular out of the ashes. I guess the whole world is made up of things coming together and things falling apart. You never know what you may have. You may have beauty in the midst of your ashes.

Don’t lock yourself up distancing yourself from others. It seems like that would be the easy way to do things… to just shut yourself up and pull away. That’s our natural defense mechanism as humans. We build walls to protect our heart, but in the end, we find that the very walls we build are actually keeping away the people we need most.

Take a sledge hammer to that wall, start chiseling away at the concrete even if it will only remove one brick. Keep chiseling one brick at a time. That’s progress in the making.

Reach outside of yourself and do something for others. I find that when I am helping someone else in need, I forget about my own needs. It almost makes my struggle seem not so big. So, my challenge to you is to step out and touch someone. Do something to give back to others. Find a place where you can volunteer – a cause or an organization you believe in – and give all that you can of yourself, your talents, your time.

Sometimes we just need to step out of our own pain to realize that everyone has pain, and some are struggling even more than you are. A change in perspective can be the very thing that begins crumbling the walls and opening your life for a new found hope for tomorrow.

Make the best of life when it throws lemons at you

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It’s really nice when my couch lets me out of the house. I try to spend time outside on nice days. Not a lot of time, especially if it’s hot out, but right now it’s still cool in the mornings so that’s always a pleasant time for me. Yesterday, I was able to get out and enjoy a bit of sunshine which was a nice welcomed treat for me.

As I was sitting on my back patio, I noticed lots of new flowers starting to bloom. There was a sweet smell of honeysuckle in the air and the birds were singing their songs from high up in the trees. Everything seemed alive. There was no traffic, no busy people, no distractions, just a calm and peaceful morning for me to enjoy.

I noticed one flower in particular that looked somewhat out of place tucked away in the corner of the yard, but amazingly beautiful with a brilliant mixture of red and orange colors. Maybe it was the way the morning breeze was blowing against the flower’s pedals or maybe it was just my imagination, but I am almost sure that I saw that flower stand taller as I watched it. It seemed to square its shoulders back and hold its head high as if to say, “Good morning, I’m glad you’re here!”

The thing that made this flower’s beauty stand out more than anything else in the yard was the fact that it was growing right in the middle of a compost pile…forgotten and alone…sitting in a pile of broken down waste and scraps.

Have you ever heard the saying “bloom where you’re planted?” Well, this flower was doing just that. It could have decided that life was simply too hard and given up on ever becoming anything of use, it could have decided to bury itself even deeper into the compost pile and hidden itself away forever, it could have decided to keep its beauty from ever being seen by me or anyone else, but this flower was determined to shine…and shine it did.

That flower decided to push its way through all the crap it was given and become a thing of beauty regardless of where it was stuck in life. No one but me, a few birds that were fluttering about in the trees nearby, and maybe a worm or two saw its beauty, but if only for us, it fulfilled its purpose! That one flower gave me a smile. It made a difference.

You may feel like that flower today, like you’re stuck in a stinky, smelly, horrific pile of crap, yet no matter how ugly or smelly things may be in your life, all that junk has an incredible way of producing amazing things of beauty. It may look like garbage to you, but to me, I see something incredible. I see a beautiful you in the making. I see a strength rising up that says just watch me shine…I’m going to make it.

Don’t lose hope. There is still a lot of good to come from your life. You are very much needed. You are not a mess. Because of you, someone’s day will be brighter. They will see you making it even though you’re in the middle of an impossibility and be encouraged by your strength. It’s time to square your shoulders back and hold your head up high. Don’t underestimate your value. Make the best of life when it throws lemons at you and show the world just how amazing you really are.

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.

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.

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!

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…

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.