I want to believe

Many times trying to explain the difficulties of living with a chronic progressive disease is met with a blank stare or opens the door for lots of unwanted advice. Just the concept of someone being both chronically ill and progressively ill can be hard for some people to comprehend. Add to it all the symptoms that MS causes—you know the pain, numbness, weakness, vision problems, dysfunction, emotional distress, breathing difficulties—and you find it’s a topic the general population doesn’t seem capable of discussing.

They don’t seem to understand how you can become so weary in the daily fight with multiple sclerosis that your emotions can literally go bonkers causing you to cry at the drop of a hat, but that doesn’t mean you’ve given up on life. Or how today you prefer chillin’ in bed watching a marathon of The Beverly Hillbillies on Netflix over an afternoon out with friends, but that doesn’t mean you are being anti-social or won’t want to hang out tomorrow. Or how you actually want to discuss the possibilities of what might happen to your life in the future and find it comforting to be prepared for the “what if’s” of tomorrow, but that doesn’t mean you are focusing on the wrong things and need to stop thinking about how bad things can get.

Just because I may have a bad day or be in a bad mood one moment doesn’t mean I will be feeling that way later on in the day. There’s a lot going on in my life right now and sometimes talking about it is the best way for me to process the overwhelming flood of emotions that seem to swallow me whole. Talking about it actually helps me come to terms with my reality.

For me, it seems the people who are willing to listen during those down moments and allow me to vent, they are the ones I want to have around. There’s no judging, no placing blame, no advice giving, just a listening ear, support and care. That’s really what most of us want anyway…someone willing to listen and maybe cry along at the sad moments while throwing in a laugh or two to break up the darkness we find ourselves getting caught up in.

The truth is, we want to believe friends will be there for us when we are at our lowest and that they will allow us to vent, complain, cry, ponder and question. We want to believe a cure for MS is just around the corner and that we will find ourselves in a perpetual state of remission. We want to believe today is the worst day we will ever experience and that only good days are ahead for us. We want to believe we will live to be 100 years old, happy and have experienced a life full of joyful moments. We want to believe, hope, and fight with the strength of a thousand warriors…but many times we fail.

When we find ourselves down and at our lowest, it’s then that we simply want to be understood. Will you stand with us when we cry, hold us up when we wobble, and encourage us when we grow weary? MS is not a disease that can be fought alone. It takes the support of friends and family. We need each person in our life to help us in the fight.

Together we can believe for greater things. Together we can overcome the emotional rollercoaster. Together we can do the impossible.

When you feel like giving up

When everything seems to be falling apart and the struggle to simply get out of bed becomes a monumental feat.
When the tears flow, the anger rises, and the fears take hold.
When the fatigue becomes overwhelming.
When you feel all alone because no one understands how hard even the simplest of things can be.
When your bladder fails you in public.
When your legs unexpectedly give way.
When the floor becomes the enemy and then your friend as you hug out your frustrations together.
When your vision blurs, your muscles twitch and your hands can’t even hold a cup of water.
When the pain becomes unbearable.
When your career ends and even your passions begin to slowly fade away.
When Multiple Sclerosis steals your joy and hides your laughter.
When the uncertainty of tomorrow becomes so great that even you don’t know how to overcome the worry.
When all seems lost, dark and dreary.

When you feel like giving up…don’t!

Find something in the middle of all the chaos that brings you comfort whether it’s a fuzzy blanket to snuggle with, a friend to sit with, or your favorite song to listen to. Allow yourself time to vent. It’s really okay to do that.

There’s nothing wrong with allowing yourself to feel. You’re human. You have real life struggles going on. Letting out all that built up emotion is necessary to allow the steam out and avoid an explosion.

But when you’re done with your screaming, crying and punching—when you have no voice left and no tears to fall—weed through all the mess in your life and find a smile. You know, that thing where the corners of your mouth turn upward and at times even a giggle seeps out? Yeah…that thing.

Put on the funniest movie you know of and laugh. Remember a funny story from days gone by. Talk with a friend and allow yourself to enjoy the moment. Laugh yourself through the pain, frustrations and fears.

Laughter is amazingly powerful. It has this way of pulling you out of the deepest of pits and lifting you up. It can cause your belly to ache and your ribs to hurt, but that kind of pain is worth it. Laughter lightens the air around you and gives you the ability to fly.

Soar with the eagles today. Find your smile, grab onto a laugh and spread your wings. Today…you can’t give up.

Living with the ups and downs of Multiple Sclerosis

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, a sucker punch or even kicks you when you’re already down?

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

Did you know that you can smile when you find yourself in the deepest, darkest pit of despair and you can 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, but 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 want to 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 struggles stop me from living.

Plans in our life change. They have been changing every day since the moment 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 becoming 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 bad days emotionally? No. I have those days…more times than people realize. When those days happen, I allow myself time to have my meltdown pity-party where I cry, scream, rant and even 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 because of MS or any other life changing situation that comes along.

Find something you can do in life and do it with all your heart. It may seem small and meaningless to someone looking in from the outside of your life, but don’t forget life is made up of one small thing after another. 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.

I fall down a lot

I’ve always heard that balance in life is essential. I have a feeling the person who originally penned that thought didn’t have Multiple Sclerosis. I can no more balance my body on a flat surface than my life on a daily basis. I can’t even balance my check book due to the financial strain of living with a chronic illness. A balanced life with MS sounds more like an oxymoron than a reality.

How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is an adventure filled with obstacles and booby traps. How do you balance that?

I gave up trying to plan my day in advance. Before MS, I was an organized, planned individual with my day planner in hand everywhere I went and a memory like an elephant. I remembered birthdays, holidays, anniversaries, and special occasions. I could remember anything I read, heard or saw. I even earned the nickname “Human Google” and was the go-to person when someone had a question.

Now, I have a hard time remembering what day it is, what I did yesterday and what happened on the last episode of “CSI.” I burn pizza in the oven, lose my way driving to the grocery store and forget to wash my hair while I’m in the shower. You have no idea how many times I have stepped out of the shower, dried myself off, then realized my hair was still dirty. Even my no-fail plans to remember things don’t help me remember. I lose post-it notes, forget to set alarms and can’t read my own writing.

Because of MS, I have learned that balance has nothing to do with ensuring equal time with work, fun, and family. It’s not about pleasing others or how much I can get done in a day. It’s about going with the flow and doing those things that are important to my wellness. Sometimes that means I spend the day focused on my own needs instead of work, family or fun. Sometimes that means I can mix it all up. But the important thing is to never give up when the unexpected happens.

And never forget, even the greatest gymnast in the world falls off the balance beam from time to time so don’t stress out when your emotions get the best of you and you become overwhelmed with everything happening around you. Just take a deep breath, get back up and keep trying. Don’t hold onto the stress that comes with all the daily unexpected moments. Instead, hold onto the smiles you find in the moment and keep going.

Walking into the unknown

Have you ever woken up in the morning and for a moment not just forgotten what you have planned for the day, but who you are, what day it is, where you are and basically everything and anything about life? That was my morning wake up experience today.

For a few minutes I sat in my bed and my mind was completely blank. Nothing, and I mean nothing, was there. It was a weird feeling. Most of the time that kind of thing happens when I’m startled awake from a deep sleep. It just takes my brain a bit longer to wake up than the rest of me.

When something happens that I can’t do anything about, I used to get frustrated and even angry. I hated not being in charge of my life, my brain and my body, but Multiple Sclerosis gave me a wake up call. It changed my way of thinking.

Because of MS, I have learned that sometimes in life we aren’t going to know what to do, and that’s okay. Sometimes, we aren’t going to know why things happen, how to fix them, or when they will get better. Sometimes, we are going to stumble our way through our day…many times literally. Sometimes we will find everything going well, then all of a sudden get slugged in the gut from out of nowhere with circumstances that change our day and life forever.

You are not alone feeling that way. We all experience it in one form or another. No one living with MS has an instruction booklet on how MS is going to affect them personally or something that shows them what they should do with each new challenge or symptom they experience. MS didn’t come packaged in pretty wrapping paper tied together with ribbons and bows.

When you start to feel lost along your journey, try not to hide yourself away. Step out from the fears and keep walking the road laid out in front of you. Even though MS may be difficult at the moment, I know you can do this.

Divide your day up into small segments and celebrate each one that you complete. Did you wake up today? Check! That’s your first victory to make note of.

You will find by celebrating each moment, that your day is filled with many more victories than defeats. Then when your day is over, you will know that you fought great battles, and although bruised and limping…you made it.

The day I started using a wheelchair

It is a guarantee in life that you will make a mistake, and more than one. Anyone who says they have never made a mistake simply isn’t living because that just comes along with life itself. It’s kind of weird to say, but mistakes are good. They teach us and shape the person we become.

Mistakes happen. Ask someone that has made the mistake of washing a load of white clothes with a pair of new red socks or locked themselves out of their car while it was still running (yes, I have done both), if mistakes happen. One thing is for sure, they give us new ways of looking at life.

I’ve made the mistake before of thinking I couldn’t use a cane to help me walk because it would draw too much attention to myself. I didn’t want people staring at me. What a mistake that was. I found myself holding onto walls, furniture and people in order to move around. I looked sillier hanging onto those things than I ever would have if I just used a cane, so I broke down, sucked it up and bought a cane.

It took some getting used to, but my cane simply became a tool to aid me as I walked. And besides, they come in colors and decorated with cool patterns. You can find a cane to match with just about anything you wear or bling it out yourself to make it even more unique and stylish.

I ended up thinking the same way when it came time to use a walker. You would have thought I had learned already with the cane, but I went through every emotion imaginable in the process. In my mind I was too young to use a walker and yet again didn’t want to draw attention to myself.

Between my denial and pride, I had an all out struggle. But just like with the cane, I found that using a walker made life easier, kept me from falling and gave me greater independence. So again, I broke down, sucked it up and got a walker.

Wouldn’t you know it, it happened again when I transitioned to using a wheelchair. It even happened when I began using a shower chair to bathe. I think for me, in my mind, using those things meant I was giving in to MS and allowing it to get the best of me.

Through this journey, I have discovered that using something to help me isn’t giving in. Giving in is when your attitude becomes negative and bitter. That’s when you have allowed MS to get the upper hand. As long as I’m alive and breathing…it’s a good day regardless of what aids I use to help me through the day.

I haven’t given in…I may move slower than I did before and have things to help me along the way that I had never used in the past, but I’m moving forward and not going to stop just because I may look different.

Forget how it looks or what people might think, enjoy the journey. And like someone once told me, “No matter how many mistakes you make or how slow your progress, you’re still way ahead of anyone who isn’t trying.”

Each morning I wake up to a fight with Multiple Sclerosis

Sometimes thoughts about my possible future get carried away causing me frustration, anger, loneliness and fear. I know they say not to keep things like that to yourself, but how do you explain thoughts and feelings you are having about a disability to someone when you don’t even understand them yourself?

Now mind you, I don’t live in a constant state of hopelessness or fear, but it’s something I fight regularly. That’s just me being real and telling it like it is.

Each morning I wake up to a fight. Some mornings I punch multiple sclerosis right in the face knocking it out cold. What a victorious feeling it is to wake up to a win in the ring. Those are amazing moments. But regardless of my strength and skill—something I’ve gained over the years—MS has been known to dodge my punches and come in with an upper cut that sends me to the floor seeing stars. It’s those days when hopelessness becomes a reality.

I know people care about me and about what I’m going through, and for that I’m extremely thankful, but sometimes the feelings of hopelessness overwhelm me to the point of despair regardless of who’s standing with me. I admit I have wanted to run away more as an adult than I ever wanted to as a kid. But where do I run? There’s no place to hide from MS…or the world for that matter.

If you have ever felt that way, I want you to know that you are not alone. When I’m having a tough time with MS or life in general, I find journaling helps. It’s an easy way to vent…getting all my feelings out without anyone talking back or misunderstanding what I’m trying to say. Maybe talking to your dog or a goldfish would be just as therapeutic. I haven’t tried that but, hey, anything’s worth a shot.

How do I journal? I take time each morning to write my thoughts down. I choose to write without stopping regardless of grammatical errors or confusion, no matter how random that may be. I simply allow my feelings to spill out onto the page. I rant, vent, and scream in written words. It used to be easy to do that with a pen and paper, but now I use dictation software on my computer to do the writing for me since my hands don’t work so well.

There have been times I have gone back to read what was written and sat staring at the page in confusion because the words made absolutely no sense. Not because the software messed up writing things out, but because I was talking in circles and going down rabbit trails. Regardless, I feel lighter and that’s what matters.

You would be amazed how much it helps to voice things and just get everything out. It has been better therapy than anything I’ve ever done. At least it’s been working for me. Maybe it could work for you too.

There is life outside of MS, I promise you. You won’t always have bad days even though at times it feels like it. Don’t let your thoughts ruin your day. Take charge. You hold the reigns and get to choose what hangs around in your mind.

You are not a burden

You may not believe me when I tell you this, but you are not a burden just because you need help. There are people in this world who truly love you. Sometimes you may not feel as if that could be true, but it is. You are loved, lovable and lovely.

Please don’t give up on the life that’s in front of you because the struggle has grown too big or the fight has become too great. I understand that multiple sclerosis makes life hard and can sometimes even cause such terrible pain that you find yourself unable to see how anything in life could ever be good again, but it can. Good times do happen and you have many more ahead to experience. You can’t give up now.

Sometimes the seemingly simple task of just getting out of bed is an act of courage, but I believe you can find the strength needed to push through those tearful times, pull back the covers and take a step onto the cold, hard floor of life.

No one hates multiple sclerosis more than those of us living with it. It’s hard to explain a need and why that need exists when the person you are talking to can’t physically see the struggle you are facing, but it’s important to at least try. Opening your heart up like that can be a scary thing. After all, you are sharing a weakness and need with someone hoping they will handle it with care and support. That doesn’t always happen, but it’s important to try.

It’s humbling to deal with having a need, but here it is, and here you are: resilient, courageous and brave. Did you notice the word “burden” anywhere in there? No. That’s because you aren’t a burden, you have a burden which by definition is something too heavy to carry alone. You aren’t a burden any more than you are MS.

Be kind to yourself. Be patient when you feel as if you’re drowning in a sea of emotions and pain. Be honest when you are overwhelmed. And never, ever, ever believe that you are a burden to others…because you are not.

I promise you that you will get through today. You will find your smile again. Don’t lose hope and don’t ever underestimate the value of your worth…even with a disability.

There are days when I feel weak and beaten down by life

There are days when I feel weak and beaten down by life. Where the continued fight, day in and day out, wears on me to the point of weariness. You see, even positive people have hard times. No one is immune to life’s difficulties or to the emotional strain that comes along with them.

This week has been one of those weeks for me. A week of frustrations, battles, and struggles. A week of the unexpected. You would think I would be used to those kinds of things by now…the continual speed bumps and road blocks in life, but not even multiple sclerosis prepares you for that.

Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from physical problems, to financial difficulties, to emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything is going to be okay.

When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.

Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some doozies too. Things that even the bravest and strongest of warriors would collapse under.

Yet today, looking back, you see the strength you gained through the struggle. Things may not have worked out as you planned and you wouldn’t want to go through them again, but here you are…stronger, wiser and more resilient because of it.

Today may be a day of tears and pain, but trust me when I say hang on because you have an amazing future ahead. There is still a lot for you to accomplish, new people to meet, things to do and a greatness in your path. You are going to make it and come through with a strength you would have never gained any other way.

Sometimes Living with Multiple Sclerosis Can Get Overwhelming

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis…

Read today’s post at MS Conversations:

http://blog.mymsaa.org/sometimes-living-with-multiple-sclerosis-can-get-overwhelming/