We are living with a forever disease

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We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. One thing to keep in mind is that we are living with multiple sclerosis, a forever disease, as crazy as that may seem.

There is nothing as of yet to rid the body of MS. Yes, you can manage the symptoms and sometimes even make them appear as though they don’t even exist. But don’t kid yourself. You still have MS even when it’s hidden. Be mindful of your body and what it’s telling you. Only you can hear it. Sometimes it will be annoyingly screaming at you to pay attention. Please stop and listen.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also cleaning up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up and looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with MS as if the mess we find ourselves living in has a one stop, one way fix. What makes people think they’re the experts at living with a chronic illness just because it works for some, never for all? If I choose to follow a certain diet, something different than you…am I wrong, or are you wrong? If I choose to not take meds and you choose to take something…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

Each person is different with different bodily makeup, different cell structures, different DNA, different problems, really different everything. What works for one won’t necessarily work for another. To be honest, one drug may harm a person as well as help another.

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. It’s just that each of us deals with the mess in different ways.

Don’t let anyone make you feel bad because they chose something different than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this messed up life we have. Choose to find the smiles.

I was born a fighter

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I will never give up,
throw in the towel,
back down, quit or
wave the white flag of defeat.

I may not wear a cape,
have my initials emblazoned across my chest
or leap tall buildings in a single bound
but I do wear pajamas even on my good days
and fall faster than the speed of light.
Don’t judge, that’s just the tools I have to work with.

I’m a doctor without a diploma,
a professional freestyle tumbler and
a faux Oscar winning actor. Sh, don’t tell!

I forget appointments,
burn dinner,
avoid saunas,
laugh and cry unexpectedly,
create messes,
trip on air,
choke every time I swallow and
stumble over nothing at all.

I’m a hard working,
word searching,
body fighting,
bruise finding,
re-run watching,
wall holding,
floor catching,
numb walking,
stair falling,
ice vest wearing,
body slamming,
pillow hugging,
nap taking,
slow moving,
mountain climbing,
multiple sclerosis warrior.

Yes, that’s me.

The struggles dealing with multiple sclerosis

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I woke up yesterday morning to a storm blowing outside…rain, wind, thunder. Actually, it had been raining for days. Today the morning temperature has dropped making it a bit chilly out but humid… which is my enemy. It’s the kind of weather that makes me want to curl up in my favorite chair, put a good movie on the TV and veg with a cup of coffee and my soft cuddly blanket.

Interestingly enough, the harshness of the wind cleared up just as quickly as it had started. It’s still dreary out, but much calmer than before and today the sun should be out. Did I mention that the air is humid? Humidity and my body don’t go together very well. Neither does heat or cold. Cold stiffens me and heat weakens me.

I call the struggles we go through in our life with multiple sclerosis “storms.” Storms because although they have the potential to turn our lives upside down, send everything into chaos and create massive devastation, they never last forever. Every storm has an end, no matter how fierce or destructive it may be.

If you are in the middle of a storm right now, hang on. The wind may be blowing and the rains may be pouring down, you may be experiencing a volcanic eruption or even an earthquake that is breaking apart everything around you, but your storm will end. The winds will cease, the trembling will stop, the clouds will clear, and the sun will shine once again.

I know it’s hard to see any good when everything around you seems to be falling apart. It’s not easy to rest when you’re dealing with a chronic illness and everything that comes along with it. Most of the time, you feel like you are living in a perpetual season of storms, pains and heartbreaks. But in the middle of all the symptoms and the craziness, know that you are not alone.

I have an appointment to see my doctor today. It’s just a check up so I’m not expecting anything unusual. Next week I will see my urologist to make sure things are okay with my urostomy. I have already had an ultrasound so he will have the results to go over with me. Thankfully since having my bladder removed I’m doing much better than when I was dealing with a SPC (suprapubic catheter) to drain my bladder. My bladder issues are much more manageable and easy to handle by myself now. I have even thanked my doctor for it… which doesn’t happen often.

Today can be the best of times or the worst of times, but you get to choose hope over fear. Hang on to hope for a better day today than yesterday.

Hope is what gets you through the struggles and helps you rest when you’re weary. Hope is what wakes you up in the morning and pushes you through your day. Hope is what clears the cloudy skies allowing the sun to shine in the middle of a downpour. Hope is what lifts you up when you’re too weak to even move.

Even if you don’t see the good right now in what you are facing, hang on to hope! It’s there even if it’s hiding in the shadows. There’s a twinkle just over there… do you see it? That’s hope!

The choice is yours

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When I got up this morning I saw that I had put the clothes out that I wanted to wear. I stopped for a moment and thought, why did I do that? Then I remembered I have an appointment today to get the oil changed in my van. You wouldn’t believe how many times I’ve missed appointments by not setting my clothes out. But even in doing that, it’s still possible I may miss the appointment. Such is the vicious cycle of my brain trying to be normal in a chaotic world of screwed up nerves.

I have to go to the car dealer to get my oil changed because most establishments get a bit nervous knowing that there is no drivers seat for them to sit on to pull the van in to the shop so they can do the work. I know the dealer just places a bucket or a folding chair down to sit on so they can drive. They have no problems doing that. Maybe the others think the workers may get into a wreck driving the few yards needed to do the work.

My van is set up to use hand controls for a powerchair (wheelchair) driver. All the pedals still work for a normal driver if I place the real seat back in, but then I couldn’t drive myself to the appointment which makes no sense to me. I’m trying to be independent. That would be the opposite. I know I will have to pay more for the work but that’s better than not getting it done at all.

I have noticed that at times I have to compromise my choices in order to remain independent and that’s not always bad. Sometimes different choices are worth selecting. Sometime they make life better. Sometimes they are difficult to navigate. Sometimes they are worth the wait.

When was the last time you struggled with a choice? Maybe it was this morning, when you decided to hit the snooze button—again. Perhaps it was when you left your closet in a shambles after trying on seven different outfits before an outing. Maybe it was at the doctor’s office looking over different multiple sclerosis treatment options. Or maybe it was last night when you contemplated your employment choices or lack thereof.

Often, making a decision—even a seemingly simple one—can be difficult. We are all different and live unique lives, so there isn’t a “one size fits all” approach to independence. Weigh the options, look over the possibilities, and choose. Make each choice with courage, confidence, and determination to take on the journey, regardless of how difficult it might be.

Are you feeling better?

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The hardest and most difficult question for me to answer isn’t “Would it serve you well to trust people more than you do, or to be more careful of whom you trust?” Although that seems to be a simple question to answer, it’s still nowhere near as difficult of a question to respond to as being asked “Are you feeling better?”

I don’t know if people realize how difficult being asked such a question is for someone living with a chronic progressive illness. Am I feeling better than what? How I was feeling yesterday? Last year? Five minutes ago?

It’s not like I have the flu or a broken arm which mends over a short period of time. Multiple sclerosis is a chronic disease. That means it doesn’t go away just because I went to bed early, had a ten minute break at work, took two aspirin in the morning, or deny its existence.

MS is something I will have for the rest of my life. It causes physical limitations, weakness, debilitating fatigue, numbness, paralysis, constant emotional strain, cognitive problems and a whole host of other difficulties.

I am sick with a disease that, to this day, has no known cure and will only get worse as time passes. You see, my immune system is literally on a revenge attack against my own body causing chaos in my Central Nervous System. It is attacking the nerves throughout my brain and spine and eating them like they are hot wings at a tailgate party. It affects every part of who I am.

As of today, this disease is forever a part of my life no matter what you read from Dr. Google, hear from a friend or learn from a brochure at a doctor’s office. My hope is that one day things will change for the better and MS will become a thing of the past and each day scientist grow closer to finding ways to ease the pain we all face, but today isn’t that day.

I have moments when both the physical and emotional pain in my life are overwhelming. But I also have times when I can manage everything quite well as I hide my struggle behind a smile. I have been known to cry, scream and even question my own existence especially when I find myself being judged, stared at in public, and losing friendships all because of how MS is affecting me, my emotional makeup and my everyday functionality.

But regardless of everything I am going through…no matter what happens or how down I may feel…I keep fighting. Today I woke up in a war that seems to have no end. Imagine a life lived under continual sniper fire, surrounded by hidden landmines ready to explode with each step you take and hand grenades being thrown at you for no apparent reason.

Sometimes I am weak and can’t even find the strength or ability to think past simply knowing my name. Times when MS wins as it punches me in the stomach and takes my breath away. But even on my worst days when I feel so utterly useless and weak, I refuse to quit.

I may never “feel better” like so many people want me to, but this battle isn’t over no matter what the day brings and neither is my life. I am simply living it differently than most people. It’s a new day and I have a new chance to make a difference in this world. Each one of us do. Use today to show the world what real strength is and what true warriors look like. You are my hero. You are an MS Warrior!