Posts

This year’s journey with MS

It’s hard to believe another year is almost over. Tonight, a new year begins. As they say “out with the old, in with the new,” right? As I reflect over the year now gone, I realize I have experienced some truly wonderful, beautiful moments. Times that made me sing even though I can no longer carry a tune. Times that gave me great joy and created memories that I will hold on to for the rest of my life.

It has also been a year filled with pain, weariness and sorrow. Those are the times I wish I could forget but know I won’t because those moments are still a part of who I am. If nothing else, they have made me stronger. And trust me, I need all the strength I can get right about now.

Last year at this time, I was in the hospital for an entire month working to regain the use of my legs. And although the rehab was well worth it and the exercises I learned I still do to this day, my legs never returned to their full function. Does that make me sad? Angry? Fearful? Sure. But I’m not going to let my disability stop me from living even if I do it from my chair shaking my trembling fist in the air at MS.

My daily routine is different now. My needs are different. The things I consider important have changed. But me…I’m still me. No amount of ability or disability can change that.

Think back over your year. I’m sure you’ve had both beautiful and terrible moments. Times that make you still smile to this day and others that bring tears to your eyes. That’s called life…and you lived it. You experienced it. And although your experiences have changed how you do certain things, why you do them and when you do them, they haven’t changed the person you are. You are still you.

You may live life differently than you have in times past. You may need additional tools to help you get through your day. You may get tired and weaker faster than before. You may even do everything slower. But you…YOU are not your MS.

You are an amazing, beautiful, lovely, awesome, precious, one-of-a-kind, delightfully unique individual. There is no one else in the entire universe like you. You have so much to offer the world, even with a disability.  Don’t allow MS the satisfaction of stopping you from enjoying life or even from enjoying today.

As this year comes to a close, choose to be thankful for all the beautiful moments you’ve had and to use the terrible times as bricks to fill in the potholes along the way. I can’t promise you that the new year will be wonderful and void of any pain. But I can promise you that together, with each brick we place along the journey, we are building a path that just may ease the burdens of those newly diagnosed that come along behind us.

MS may only leave destruction in its path, but we are leaving a legacy of strength, resilience and beauty. You didn’t know you were doing all that, did you?  Don’t ever underestimate your value and worth. You are priceless and those bricks…well,  they just might be rubies and emeralds!

You are worth it

Sometimes life is a roller coaster, only when it comes to Multiple Sclerosis it can mean that literally. Vertigo is something I’ve fought from the start of diagnosis. Some days having the room spin around, shift up and down, and move on me is manageable. Other days, simply sitting on the couch can trigger an entire tsunami of waves.

The uncertainties of just that one symptom can be a lot to handle. Now add to that all of MS let alone all of life and, well…let’s just say some day I would rather stay in bed hiding under the covers than facing the day. Being overwhelmed every move you make is not something anyone wants. It takes a strong person to face a life with MS. It’s definitely not a disease for wimps.

When you get to the point of feeling as if you are drowning in a sea of symptoms, doctor appointments, tests, changes, meds and even health choices, sit down and take a breath. You have to pause at those times in order to make wise decisions and to keep from going crazy.

Making decisions is exhausting work. It really is. There’s a ton of information to weed through, side effects to consider, lifestyle changes to manage, finances to shuffle, and schedules to maintain. Be sure the decisions you make today about managing your MS is what’s best for you, not just because someone online said so or a friend pressured you into it. You have to think of you and your needs…and the you in the future.

You are the one in charge of your life, not MS, a doctor, your spouse or anyone else. Take the time you need to make informed decisions, then when you’re ready…go for it. So  many times we push ourselves too fast and too hard then find ourselves sitting in a puddle of regrets in the middle of the kitchen floor.

Today, I want to encourage you to pause and reflect on all you are doing in life to be sure it’s what’s best for you. If you need to weed some things out…do it. Quit trying to prove how strong you are. You are already strong so there’s nothing to prove. You are strong even when you feel you are at your weakest, even when all you can do is cry, even when you are overwhelmed with symptoms and a life of change, even when decisions are tough.

Pause today for yourself. You are worth it!

slippers

It’s my party and I’ll have fun if I want to

Have you ever had this happen…a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with MS…which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping…doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow. I’ve felt it myself at times. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I know it’s hard, but try and find something good in the chaos. When you have to stay home, choose to have your own party in your PJs. Even if it’s a party all by yourself, have it anyway. Don’t let the fact that you can’t go somewhere get you down.

I have a party box filled with puzzles, colored pencils, coloring books, games, legos…all those creative things I played with as a kid. I pull it out and have fun. Strangely, it’s quite therapeutic and helps me to pass the time without turning the evening into a pity party. I like my PJ parties so much better. 

So the next time you have to decline a friends invite, put on some festive PJs, make some hot cocoa and pull out your party box.

I gotta go now. I have some new Play-Doh waiting to be turned into something amazing. I think I’ll mold an alien with googly eyes and spiky hair.

Multiple Sclerosis is a disease of change

Life is filled with ups and downs. Sometimes we go through days when all we seem to experience are the ups. Those are days we relish, enjoy, and soak up because we know the down days will come. Regrettably, Multiple Sclerosis has more downs than ups. They happen when we least expect them and sometimes the unexpected is so far out of our plans that it messes up everything. So, what do you do when MS throws you a curveball?

You do your best to find something good in the mess.

Did you know that you can smile when you are standing in the deepest, darkest pit of despair and laugh through the pain? People may look at you oddly because you are smiling at a time when you should be crying (because that’s what they would be doing), but that just shows the strength you carry with you every day.

I can’t make MS go away. It is a part of my life now. One thing I have done and something I learned early on is that I can’t let MS control me. It may keep me from being able to do the things I usually do and it may stop me from fulfilling the plans I thought were important when I could walk, talk and think correctly, but I refuse to let those obstacles stop me from living.

Plans in our life change. They have been changing every day since we were born. I can remember in first grade wanting to be a teacher, then by sixth grade I decided I was going to be a roller derby athlete. At age 18 I finally decided I wanted to become a computer engineer which yet again shifted to a web developer and graphic designer. Then MS came along and brought about a new change. Now I find myself a writer most of all.

You can look back at your own life and see similar changes in plans. MS will cause you to readjust your life, but it’s important to go with the flow rather than letting the changes stop you from living.

MS has taught me the importance of laughing in the moment and never letting my attitude become negatively focused. Does that mean I don’t cry or have a bad day emotionally? No. I have those days…more times than people realize. And when I do, I allow myself 30 minutes to have my meltdown pity-party where I cry, scream, rant and ask all the “why me” questions. Then once I let it all out, I take a deep breath, shake everything off and move forward.

I can’t change MS, but I can change me. Sometimes it’s a fight, but I’d rather be a person moving forward in life than one being held back or stuck in a puddle of mud.

Find something you can do in life and do it with all your heart. It may seem small and meaningless, but don’t forget life is made up of small things. The big things get the recognition, but it’s the small things that really matter. Shift with the changes and when the down days come, keep living.

Living in a snow globe

Do you ever feel like you’re living in a snow globe?

I live in a snow globe kind of world. The wind doesn’t blow and the rain doesn’t fall. Instead, the earth shakes and everything flips upside-down, right-side up, then upside-down again. The torrential swirls that are created sends shockwaves throughout my world and threatens to topple Continue reading “Do you ever feel like you’re living in a snow globe?” »