MS should stand for messy screwups rather than multiple sclerosis

Sometimes I laugh at myself, like yesterday when I accidentally dropped a cup of flour all over myself and the kitchen floor. Laughing about it was much better than crying. Besides, tears mixed with flour would have created a sticky mess.

I have accidents all the time. I trip, fall, misplace things, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with Multiple Sclerosis. Some of us have more than others, but they seem to just be a part our life now.

Of all the messes that have happened in my life, some of my most embarrassing moments have been bathroom related. It’s not always easy to talk about the challenges I face on a daily basis when it comes to toilets, toilet paper, and bathroom accessibility. It’s not like I can just start a conversation, “You wouldn’t believe the mess I made in less than 10 seconds flat yesterday.”

The muscles that control my bladder and bowels simply don’t work any longer. No matter how hard I try, my brain will not communicate with that area of my body. Believe me, I’ve tried. A few years ago I had a suprapubic catheter (SPC) surgically inserted to help with my bladder issues. It’s a tube coming out of my belly attached to a urine bag. So basically, my bladder is now an external bag that I have to periodically empty in the bathroom throughout the day.

That is one of the best things I have ever done in my MS journey. No more accidents in the middle of the store when I’m out and about and no more sleepless nights because of multiple bathroom trips. Well, at least no more puddles on the floor.

I tried self catheters and I know many people who are successful using them, but my hand weakness and tremors made that an impossibility. There are also some mechanical devices available that can help people control their bladder with meters, wires and button, but for me they wouldn’t have worked.

I used to tell people that my bladder and the front door had a conspiracy against me on a daily basis. Every times I would make it home after I had been out, as soon as I got to the front door to unlock it, my bladder would no longer hold things in. I can’t even count how many times I had to take a shower and wash a load of laundry after I got home.

Now, my bathroom accidents mainly happen due to my bowels and me not getting to the toilet in time. The problem for me is that since those muscles are not working, I can’t flex or constrict them to help hold anything in. I get at most 30 seconds to make it to the bathroom, pull my pants down and sit on the toilet, and many times I don’t quite make it.

One thing is for sure, my abs always get a workout when I finally make it on the toilet since those are the only muscles I can still control. I should have washboard abs by now. Is that TMI? It may be for some people, but I think open and honest conversation is always best. It helps both those with MS and those caring for someone with MS.

When I am out of the house, bathroom locations are the first thing I think about. I want to know where the closest ones are and if they are wheelchair accessible. And just in case I don’t quite make it, I also keep a change of clothes with me for those unexpected moments.

Hey, s*** happens and most of the time I have no control over it.

MS Gets on My NervesMS WarriorMS Superhero

 

storm

Living in a storm called multiple sclerosis

Some days it feels like I’m stuck in a forever looming storm but the more I think about it, the more I realize that every storm has an end. Think about it. There is not one hurricane, tornado, tsunami or flood that is still threatening destruction. They have all come to an end. Some brought great fear and loss along with them, but they all ended.

When multiple sclerosis came along, it was a tremendous storm in my life. It seemed to come out of nowhere and slammed into me full force. No warning, no preparations. It just snuck up and hit me with enormous wrath and fury.

I know I have endured some horrendous storms in my lifetime but the important thing is that I made it through each one—relationship struggles, financial difficulties, health problems, unemployment, rejection, insecurities. Yet each storm has come to an end at some point in time.

We have this tendency to think that what we are currently facing is the hardest thing to ever happen in our life and that we are not going to make it through, but then tomorrow comes and we realize that we have made it. Yes, there have been lots of tears; yes, there has been pain; yes, we feel as if we are about to take our very last breath…but the storm calms and we find ourselves on the other side.

No storm lasts forever. It may seem like they do, but if you take time to look back at everything you have come through in your life, you have made it to the other side of some really crazy, difficult and troubling times…but you’ve come through them. That’s the important part. You made it. Maybe a little weary, beaten up and forever changed, but you made it.

Life didn’t overtake you. You didn’t crumble. You may look different. You may have battle scars and the threat of future storms still to come, but somehow, some way, the last storm that blew through your life ended and you managed to see the sun shine and a rainbow light up the sky once again. You did it then and you will do it again.

Today, you may feel as if you are surrounded by an earthquake, strong winds, a downpour, tsunami or lightening. You may even feel like they are all hitting you at once, but even this crazy, mixed-up storm in your life has an end. Don’t lose heart. Don’t lose hope. Let the winds blow and the rains fall, but know that you are going to make it through. You have endured much already, you will endure this too. Hold on!

MS Gets on My NervesMS WarriorMS Superhero

 

My multiple sclerosis journey is different than yours

If you enter a start and an end destination into a GPS system, you will be presented with a suggested route for your journey. That suggestion is not permanent. It is merely one option out of hundreds, if not thousands of routes you can take to get to your final destination.

If you decide you want to pass by a certain landmark along the way, or visit every museum in a 15 mile radius of each major city, or take only back roads for a greater adventure, you discover that the trip can easily be re-routed to accommodate those things. The GPS voice immediate starts rerouting as soon as a change is discovered.

We are each on this journey called “life.” Each of us have our own road and our own destiny, after all we are individuals on our own personal journey. The road one person takes is not the same road another person takes. Two different people, two different roads, two different destinies…yet for us, we have this crazy disease called multiple sclerosis thrown into the mix.

What’s interesting to me is that some people with MS try to force others to follow the road they are taking because they think their road is the only road, and dare I say many even think their road is the “right” road to follow in how to live with MS. But that is SO VERY WRONG.

The path each person takes in life is theirs and theirs alone…not anyone else’s. No one can drag you along their road. They can’t carry you piggyback, pull you in a wagon or push you in a shopping cart. The road for your neighbor is different than yours. The road for your sister is different too. The road for your friend, yes, you guessed it, it’s different as well. Your journey, your path, your life…all yours.

Yet when it comes to MS, it seems some people think there is only one road to take. Some think it’s a path following a specific diet, others think it includes a certain medication or treatment, and others think it means doing something that has yet to be proven helpful. Opinions run rampant out there and it can confuse even the most seasoned of travelers.

No matter what other people think, you have to choose for yourself the road that is best for you. Take the time to be informed, lay out your options, ask questions, plan your route, and step out. Remember, you are the one that has to travel the road in front of you…not anyone else.

Don’t get caught up in following the crowd or constantly detouring in hopes of finding a road without difficulties. Potholes, dirt roads, weather beaten paths and speed bumps are all a part of the MS journey. That’s just how it is. 

I made a decision years ago to shut out the naysayers, the overly opinionated critics and the misinformed masses. There just isn’t an easy solution to living with MS and there isn’t a cure either. I chose to not let all of those voices keep me from living life on my own terms. I know my choices may not be popular or even recommended by the professionals, but they are mine to make.

Remember…it’s your journey. You choose. Don’t let anyone guilt trip you into doing things differently than what you believe is best for you. It’s okay, and many times imperative, to put yourself first in this journey.

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple Sclerosis is expensive

It is shocking to me how much it costs to live with a disease like multiple sclerosis. If someone would have told me before I was diagnosed that some of the meds can cost up to $70k a year, I would have laughed at them and said, “You ‘re crazy. Nothing costs that much.”

How wrong I would have been.

Thankfully some of the meds can be provided at lower costs, but not all of them can. The handful of meds and supplements used for spasticity, pain, vitamin D deficiency, bladder and bowel issues, tremors, cognitive difficulties, and vertigo add up. Sadly the expense doesn’t end there.

There is also the cost for mobility aids, medical equipment, doctor’s appointments, home modifications, and caretakers. Add to that the cost for insurance premiums, copays, transportation, MRI’s and blood test. Everything just keeps piling up and emptying the bank account.

Over time I have found some organizations that will help with the increased expenses.

Dental Help:

When my teeth kept breaking I searched online for help and found a group called Dental LifeLine Network that helps people with disabilities get donated dental help. Last year I filled out an application for help and was recently approved. They hooked me up with a local dentist that would correct all of my dental issues at no cost to me. I have a few more appointments left and should have a beautiful smile once again.

Insurance Premiums and Medication Support:

I came across an organization that provides financial help for people with serious and chronic diseases. There are several out there, but the one I applied to was The Assistance Fund (TAF). Because of their help I am able to have a supplemental insurance plan that covers all of the costs that my regular insurance plan doesn’t cover. I now have 100% coverage for any durable medical equipment the doctor prescribes. Things like wheelchairs, a hospital bed, bathroom grab bars, and wheelchair ramps. I also have complete coverage for all needed blood tests and MRI’s.

Cooling Vest:

The MSAA Cooling Program offers cooling vests and accessories for people with multiple sclerosis. Cooling vests are commonly worn over clothing and contain insulated pockets that hold small ice packs. MSAA also offers smaller products to wear under clothing as well as accessories to help cool the neck, wrists and ankles. They provide these products at no charge. I wouldn’t be able to make it outside in the summer heat without one.

MS Support and Assistance:

When I needed hand controls for driving I applied for assistance with The Multiple Sclerosis Foundation. They have different programs to help people with MS get the support they need. Things like Emergency Assistance to help with rent and utilities, a Computer Program that provides a laptop or desktop computer for individuals with MS on limited or fixed incomes, and a Assistive Technology Program that will help locate, partially fund, or provide full funding for a wide range of devices.

Local Support:

In my state (Alabama), they offer a waver for people with a disability to be exempt from having to pay an annual property tax for a home. This can save someone thousands of dollars a year. Check around your local area for other types of programs like utility support to help with the high cost of running an air conditioner throughout the summer months, food programs that deliver ready made meals to your home, and exercise programs that help people with a disability to stay active.

There are other organizations out there that help people with MS, these are just the ones I have used. If you have a need, ask around for help, search the internet and don’t give up.

MS Gets on My NervesMS WarriorMS Superhero

 

I didn’t give multiple sclerosis permission

Weather can be so unpredictable. I would love to be able to tell it to snow on the hottest day in July, or to rain when not one drop of water has been seen for months, or to make a storm dissolve and disappear. But no matter how hard I try, I can’t make those things happen. The wind didn’t ask me which way to blow today. The sun didn’t even get my permission to come up in the first place.

I actually think the weather is more predictable than multiple sclerosis. One day I may wake up feeling as if I can conquer the world and other days I feel as if the world has conquered me. No matter how prepared I think I am or how much I try to guess what tomorrow may bring, the unplanned and unexpected happens.

Overnight, MS seems to have some kind of party in my body, or a revolt (I haven’t figured out which one), causing radical changes that I hadn’t planned for. If I could choose, I would make it all go away. There are days I would love to be able to tell my legs to march forward, my voice to speak louder, or the pain to take a vacation, but I can’t simply wish my MS away. That would be wonderful if I could.

If something isn’t working, don’t get down on yourself or allow your emotions to overwhelm you with fears and worries. You are living in a different world now with a different kind of “normal.” The only control you have is in how you respond to the unpredictable and how you react to the changes. Believe me, you will have plenty of opportunities to work on those things.

Some days I’m a pro at it, other times not so much. Today I would much rather hide away in my bed and avoid everything happening around me but I can’t seem to convince my brain to let me…so I get up.

The most important thing I have learned is to be thankful for each new day I am given and to cherish the people in my life. Those are the things that really matter anyway. You can’t relive yesterday and you can’t live tomorrow in advance…all you have is right now, this very moment. Make the most out of every second of it.

Don’t give MS the satisfaction of consuming your day and overloading your emotions. That’s the one thing you do have control over. So shove MS out of the drivers seat and you take the wheel. You’re in charge of today. You decide how fast you go, if you need to pull over into a rest stop for a break, or if you take the scenic route.

I’m spending my day stuck in the mechanic shop getting a flat tire fixed surrounded by the smell of rubber tires, grease and stale coffee. I just wish MS was as easy to deal with as a flat tire and could be fix as easy.

MS Gets on My NervesMS WarriorMS Superhero

 

smile

Multiple Sclerosis isn’t the smiling face you see in brochures

As a kid people would ask me, “What do you want to be when you grow up?” My answer would change often, but I would mostly respond with teacher, scientist, minister or musician. Never once did I think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is many days they are also spent in tears. MS isn’t the smiling face you see in brochures or the victorious athlete crossing the finish line in the advertisements. It’s everyday people like me facing weakness, cognitive difficulties, bladder problems, tremors, vision troubles, unforgiving fatigue, and numb body parts.

I want the truth about MS to be seen by the world. I want to hear about people with MS that are facing hell, yet making it. That’s real life with MS.

I want people to know about the struggles and the problems we face. I want to meet the courageous, the brave, the unstoppable, the true warriors. I want to hear how lives are being lived in spite of a horrible disease. I want the world to know about the sleepless nights we face, the embarrassing moments we endure and the emotional chaos we go through.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give matters. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdowns really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

Allow yourself to feel, get angry, cry, then wipe your tears, hold you head up and conquer the day. You may get weary in the fight but even on your worst days you are still fighting.

Never doubt, even for a minute, your importance or your value. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli

MS Gets on My NervesMS WarriorMS Superhero

 

I will not be defeated by multiple sclerosis

I’m not sure how to answer someone who asks “What’s it like living with Multiple Sclerosis?” Uhm…there’s just not a simple answer to that question. Trying to describe the physical and mental difficulties and limitations that I experience because of MS is often met with some interesting responses from others.

I’ve been told to “take Tylenol” for the pain in my body, to “eat more potassium” for the cramps in my legs and hands, and to “take B12 and energy pills” for the exhaustion. When I explain that those things simply don’t work for me, they look at me like I’m a one-eyed purple polka dotted crazy person. After all, it works for them so it should for me too.

Some people just don’t seem to understand that those of us living with MS aren’t like them. We have a damaged Central Nervous System and our immune system is in chaos causing our own body to attack us. Some of the damaged areas to our nerves have healed well over time but some haven’t and new damage appears all the time.

The pain we experience is not because we are in real pain like someone stepping on our foot. We are in pain because our nerves are misfiring and sending pain signals to our brain when there is no real existing pain in the first place. To stop the pain you have to stop the communication process, not the actual pain. There are some medications that help to disrupt this broken communication, but I haven’t found one yet that works for me.

The numbness in our body is not something that goes away by uncrossing our legs like someone does when their foot falls asleep. Parts of our body are numb, experience that “pins and needles” feeling, and cause pain to shoot through our body every minute of the day. No amount of rest or exercise will wake them up.

The exhaustion we experience isn’t because we didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom of the disease that is not remedied by natural herbs and better sleep. Although those things can help, it’s not a “fix”. Making it through one day without having to take a nap is a good day.

Many of us also deal with vision problems that can’t be corrected with glasses, dizziness, muscle weakness, bladder and bowel dysfunction, breathing difficulties, and of all things, heat makes it all go into supersonic chaos.

That hot shower most people enjoy, we can’t take because our muscles will go bonkers. That hot tub soak, an impossibility. That day at the beach, even in the shade our symptoms can be hard to deal with. That trip to the mall, within thirty minutes many of us are done. Just making our way across the parking lot of the grocery store presents a challenge that some days we don’t want to face.

But through it all, I have learned to look this disease of MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.”

We will never understand all the why’s in life. Why MS? Why now? Why me?

Stop questioning why you are going through the storm you are currently facing and determine to be thankful as you go through. You can be thankful even in the most horrible of circumstances, but it’s a choice; and you have it within you to make that choice. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS.”

I have learned that strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude I have while going through the difficult times in life. You are doing it. You are making it. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!

MS Gets on My NervesMS WarriorMS Superhero

 

A life with multiple sclerosis isn’t as easy as some people think

One of the hardest things about living with multiple sclerosis is the pressure from some people to just get better. It’s almost as if they think I have this secret power tucked away in my sock drawer that will rid my body of all the symptoms, difficulties and struggles MS is causing in my life, but for some unknown reason I choose not to use it.

When I am unable to join in on the outings, parties, dinners and trips people are taking part in, the vibe I get at times from them is one of doubt that things could actually be “that bad.” I can almost see the thought bubble above their heads as they wonder how it is I can go from feeling okay one minute to feeling like crap the next.

The best thing anyone could ever do for someone living with MS is to allow them to decide how they’re actually feeling and what they are capable of doing. I like it when people leave those choices up to me and are okay with what I choose. After all, it’s my body, it’s my life. I should know how I’m feeling.

Sometimes I do need that tough love push…but most of the time I don’t. I push myself harder than anyone else could anyway. Most of the time I need someone to tell me it’s okay to stop pushing so hard, to give myself a break and simply be.

Those that love me enough to give me the option to choose and are okay if my decision is different than what they want or planned for…those are some of the most amazing people on the planet. No one should ever have to spend time defending how they feel.

Living with MS can be extremely lonely and amazingly enough it’s possible to feel that way sitting in a room all by yourself as well as in a room full of people. Sometimes you just want someone to sit by your side and simply be there, to give you a hug, to listen, to care. No agenda…just be there.

When you find yourself sitting in a puddle of your thoughts wondering where everyone has gone, know that there are others with MS who understand. We may be separated by miles and miles of distance and separated by oceans and seas, but we are connected through wires and keystrokes. We are in this together. Sending you a virtual hug…from me to you today.

MS Gets on My NervesMS WarriorMS Superhero

 

Scared is how you feel, but brave is what you’re doing

I am terribly afraid of cockroaches. I don’t know why, I just am…especially the flying kind. Those freak me out. Just writing about them gives me the heebie-jeekies. I remember one time when one landed on my shoulder. I danced around the room like a breakdancing ninja trying to shake it off. I can still feel its legs crawling across my back. Yikes! To this day, if a cockroach shows up in my house you will hear me scream…all the way over in Australia.

Fear is a powerful thing. It has this way of paralyzing someone no matter how strong they think they are. Those of us living with multiple sclerosis are faced with some pretty big fears too. I have personally dealt with my own set of fears because of MS: the fear of not being able to take care of myself, of being rejected by the non-disabled world, of having to depend on others for even the smallest of things, of not being taken seriously when talking about my hidden symptoms, of being made fun of for using a cane, walker or wheelchair.

With all those fears swirling around in my head, I had a choice to make. Was I going to let fear control me, bringing great amounts of suffering to my life, or was I going to admit they exist and work through them? Could I stand up to the very things I feared? Was I even strong enough to face them?

I decided that I wanted to work through them. It wasn’t easy and new fears kept trying to sneak their way in, but I was determined to keep my focus on living for today, not fearing tomorrow. You do realize that even the most courageous warrior’s knees will knock and voice will shake when staring down their fears, right? Scared may be how you feel, but brave is what you’re doing.

For so many people, the fears of MS can be a lifelong struggle. It takes courage to confront those fears head-on, but if you want to find your place in this world you have to face them. You have to learn to accept yourself, your disability, and your limits, then push past everything you find there to discover your new abilities and greater passions. MS is real but so is your future and in order to reach it you have to let go of the fears that hold you back.

I won’t lie, this journey we are on is not easy, but don’t let fear knock you down along the way. Make sure the choices you make today are not being made out of fear. You will discover that you have strength far beyond what you ever imagined possible had you never looked MS eyeball to eyeball and said, “I can do this. I refuse to give up trying.”

Be determined and stand strong. You are braver than you think, stronger than you feel and more courageous than you ever imagined possible. You really can do this!

MS Gets on My NervesMS WarriorMS Superhero

 

Multiple Sclerosis actually means Multiple Scars

If you could see my insides, you would see scar after scar after scar. I guess it makes sense that Multiple Sclerosis actually means Multiple Scars. You see, the nerves in my brain and spine have been chewed to bits…literally.

I tell people that the nerves in the body are much like the wiring in a house. Mine have been damaged to the point they are short-circuiting and signals are getting crossed. This causes terrible chaos in my life. I guess you could say I’m a real live wire.

I have some nerves with such extensive damage that repair cannot be made. In their place now exists a black hole. A scar so deep that nothing could ever live there again. If you took the time to learn of my scars, you would hear about what life is like for me. You would hear of the pain I endure, the way my brain confuses thoughts and words, how my tired is different than other people’s tired, and how parts of my body have gone numb and lost their ability to function.

But do you know what else you would hear? You would hear about how strong I am and how at the end of the day I’m still going. I won’t quit even though I’m covered in battle scars. Those scars are a part of my life now.

I may not be able to do the things I used to do because my wiring is a jumbled mess, but just because people can’t see what’s happening inside my body doesn’t mean the damage isn’t there. I wake up each day to a fight…a war. Not one that I chose, but one I must endure. At times I am battle weary, but I will never be a quitter and I will never lay down my sword. I’m a warrior that way.

My scars are laid out like a constellation visible only by an MRI. They shine bright even though they are hidden in the dark. When I pause to look at the stars in the nighttime sky, I see amazing beauty as I watch the lights twinkle and glow but did you know that stars are just broken pieces of matter? They are the scars of the universe and yet even though they are caused by tragedy, they give hope to millions.

Today your sword may be heavy and your body tired…but you are still going. Everything you accomplish is a victory no matter how small. Each muscle you move is a triumph. Regardless of what the day holds, you will not be defeated. You are a winner covered in scars bringing hope to others without your even knowing it. People watch how you live your life and are in awe of your tenacity and courage.

If I can endure, if I can keep going, if I can hold on…then I know you can too. Together we create an amazing display of sparkles in the universe. Together we shine bright. We will not be defeated or give up.

MS Gets on My NervesMS WarriorMS Superhero