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We are in a war against our bodies – this is multiple sclerosis

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There is something about having things left undone that sets me on edge. I don’t know why, I guess that’s just how I’m wired. Because the temperature outside is dropping I needed to make sure the air in my van tires were properly set. The cold weather always decreases the pressure so air needs to be added. Like most people, I have a portable air pump so I don’t have to go to a gas station or a car mechanic to pump them up. The temperature dropped to below freezing last night so I had to make sure everything was going to be okay in the coming days.

I was glad I checked them out. I spent about 20 minutes adding air to each tire. I checked my riding mower tires too while I was at it, so all my tires are good to go now. I won’t know it my van tires are properly filled until I go down the road. The sensors in the van will let me know if the air is still too low. Hopefully I filled them up without needing a bit more air.

There are a few more jobs I need to do around the house in the coming days. My to-do list has become filled with an unending list of must-do items. I try my best to tackle my list, but lately it has gotten bigger than I can manage. I’m going to have to get some help if I don’t want the coming winter to overtake me.

Dealing with all the things I need to do around the house doesn’t put MS on hold. When multiple sclerosis stepped into my life years ago and it made a jumbled up mess of my bodies makeup. My internal wiring has been a crazy tangled up mess since then. So the mess outside of my body makes an added mess to my insides as well. Either I’m battling a myline munching monster or it’s life itself complicating everything around me.

It feels as if I’m living in a virtual Trouble board game merged with Operation… My Pop-O-Matic die roller is broken and I have been sent back to start more times than warranted. My Operation doctor is still working to determine which nerves have been cut. Is it the train of thought nerve? The vision nerve? The speech nerve? The funny bone nerve? No one knows.

MS short circuits my bodies ability to properly function and creates chaos where there isn’t any chaos to begin with. Nothing ever seems to go as I want it to. My body seems to have a mind of its own and has adventures without me. I tell it to walk and it rolls around on the floor. I tell it to run and it sits down laughing at me. I tell it to sleep and it throws a temper tantrum. It just doesn’t seem to listen to anything I say. It’s worse than a rebellious teenager.

We are in a war, you and I. A war, not just against a broken pop-o-matic die roller or a faulty operation doctor. We are in a war against our bodies… if there is such a thing. There are so many things I used to be able to do that seem huge today and nearly impossible. Everything from laundry to running the dishwasher, from sorting mail to grocery shopping, from driving through traffic to maneuvering through crowds, they all seem extra hard, nearly impossible, and bigger than life.

You know what I have learned in this messy life we have? I have learned that it’s okay to have an unfinished to-do list. It’s okay to let the dishes sit alone in the dishwasher. It’s okay to not clean out the car, to slow down when I’m in a hurry, to enjoy a moment of quiet with just myself. Each minute is a gift we are given. We get to choose how we use them.

Take more care in how you use your minutes. They are precious and shouldn’t be wasted with worries and frustrations. If that means things don’t get done… oh well.

Use your minutes with care. Do something you love, something just for you, something that will give you a chance to simply enjoy the day. You are amazing and deserve some time just for you.

MS bizarre happenings

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Sometimes I do things so strange that blaming it on multiple sclerosis isn’t even fair. Last year I came close to having a bathroom accident trying to make it to the toilet in time before an explosion wiped me out. When I got to the bathroom I barely had enough time to pull my pants down, quickly lift the toilet seat cover, and transfer to the toilet. I didn’t notice anything odd until I pushed the knob to flush the toilet and I could feel water gushing past my bum.

Well I did it again. I discovered that when I lifted the toilet seat cover I actually lifted the seat along with it so I was sitting on the edge of the toilet bowl itself. I came so close to actually falling in the bowl. After a quick shower and a giggle at the absurdity of the event, I replayed what I had done. Out of everything that had happened I blame my right hand for it all. My right hand is more of a paperweight than something of use so when I had lifted the cover I wasn’t paying attention to what I was doing. The motion of lifting something was all that mattered in the moment.

Will this happen again? Probably.
How can I avoid it? Keep the cover lifted all the time.
With the cover lifted, will my dog make more of a mess than I did? Probably.
Which mess do I want to deal with? I still haven’t determined the answer to that question.

Sometimes bizarre things happen with MS just because it exists. After all, we live with a strange, unpredictable disease. The strangest symptoms I’ve dealt with include:

  1. Feeling of an internal earthquake taking place inside my body.
  2. Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  3. Feeling as if water is dripping on me when I’m no where near a faucet.
  4. The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage.
  5. Feeling as if food is stuck in my throat when I haven’t eaten anything.
  6. Involuntary movements of my body like me accidentally kicking the doctor.
  7. Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  8. Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  9. Feelings of dizziness and being off-balance which accompanies nausea.
  10. Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  11. Dealing with 3-D illusions like when an object is moving straight towards you but it appears to be swerving and shifting in its path.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing these things can help ease the burden, even if only for a little while. You got this.

 

What people with MS would love to hear

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It’s heartbreaking to hear from a friend or loved one that they have been diagnosed with multiple sclerosis. If upon learning the news you go through a range of emotions—from shock to sadness to anger to fear—well, then just imagine what your friend must be feeling themselves.

It’s only natural when a loved one is going through a health struggle like MS, we want to support them in any way possible. We want to be a physical presence in their life to assist them, but still need to respect their personal boundaries as they navigate a major change in their life. Sometimes, the best thing we can do is send a thoughtful note with some comforting words to let them know that we care.

But even then, it can often be difficult to find the right words. I’ve put together a list of items that someone living with MS would love to hear from a friend or loved one…

  1. “I’m here for you”

    Show up for your loved one and remain by their side as they go through the crazy MS process. And if you say these words, make sure you mean them, and support them through thick and thin.

  2. “Thinking of you”

    I’m thinking and praying for you… and I really mean it!

    Hearing that your wellbeing is on someone’s mind can be a great comfort, and the act of praying may be very peaceful for you as well. If you or your loved one aren’t religious, it’s still helpful to hear someone is sending you good vibes daily.

  3. “Let’s have some fun”

    Tell a Joke… after all, it’s been said that laughter is the best medicine. Ask your friend for suggestions on renting a movie or watching a tv series that might be uplifting and humorous.

  4. “I care about you”

    I don’t know what to say, but I care about you and I’m here for you if you need to talk or just cry.

    Listening is sometimes the best thing you can do for someone with MS. Silence is actually ok. Sometimes those empty spaces allow both of you to collect your thoughts and emotions. Be sure to listen without judgment.

  5. “You are so beautiful”

    I’ve set up an appointment with the hairdresser to give you a new haircut and manicure.

    Feeling confident when dealing with physical challenges can be difficult at first. No matter what physical symptoms your loved one is experiencing, this is an opportunity for you to make sure their inner and outer beauty is recognized by letting them know that they are beautiful… even when in PJs and having messy hair.

  6. “What day works for a visit?”

    Call and ask when a good time to visit might be. Be mindful when you are visiting that people with MS can tire easily and several short visits might be best.

  7. “Let me help you with…”

    Ask if they need help with any particular tasks such as:
    Grocery shopping
    Cleaning the house
    Making a meal
    Laundry
    Picking up prescriptions

    Finding the time and energy to run errands can be a challenge. They may feel ashamed in asking for help with tasks even though it is needed. Show that you are sincere in your offer to help by making suggestions.

  8. “I love you”

    Send a note with a personal gift such as books, movies, word games, small mementos, or special personal care products. When nothing else feels right, these three simple, powerful words can mean the world. They might be just the thing your loved one needs to push through the day.

  9. “There are so many things to love about you”

    MS has a way of feeling all-encompassing. Those affected may feel like their identity revolves around being a patient. That is simply not true. Your loved one is so much more than someone who has MS. They could be a dog-lover, artist, parent… Help them focus on all their amazing traits that have nothing to do with their illness.

  10. “How are you doing?”

    You can be there for your loved one by asking them how they’re doing not just physically, but emotionally as well. Don’t be afraid to ask about their mental health. Sometimes physical symptoms are only one part of the puzzle when it comes to MS.

Feeling run down

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I had a difficult time this past week with my health. I had grown so weak and lethargic that I wasn’t good for anything. I didn’t have any strength to even eat. I couldn’t keep any foods down either and ended up dry heaving any time I attempted to swallow. I think I spent 3 days straight just emptying my stomach.

My family was wonderful and they filled my cupboards with some much needed nutrients since I wasn’t doing so good at keeping any of my basic foods down. My mom pumped me full off vitamins and had me drinking meal replacement shakes because they are so full of everything my body needed.

After about 3 days of working hard, I was able to actually sit up by myself. That was a miracle in and of itself. Today has been the first day that I have been able to actually take care of myself, by myself. I lost about 15 pounds during that time. I wear size 7 rings and they all fall off now… ugh.

The heat and humidity I’m sure isn’t helping me out even with the air conditioner running. It feels like I’m trying to move through thick mud, and think through thick fog. All I want to do is lie down and sleep – and then sleep some more, after that. I still can’t function normally because everything leaves me wiped out.

I get short of breath even when I’m doing nothing at all. My recliner has become my new BFF. I’m hoping to be able to actually sleep today. I know my body needs lots of it. I didn’t think this summer was going to affect me like it has. But I’m thankful for an amazing family that lives nearby because they have kept me going.

My mom did a load of laundry for me and my brother went to the store. All things I couldn’t do on my own. I kept thanking them for their help… even over thanking them. Never overlook the people in you life that are willing to help. They aren’t that easy to find but are keepers when they show up.

Today I’m just going to sit quietly in my recliner, kick my feet up and veg. Even though my head is spinning and my appetite isn’t quite right, I’m going to eat what I can because my desire is to be healthy and enjoy my life. My first step to healthy living is gratitude. Thanks to all my friends who care for me, pray for me and laugh with me. You are my rock. I need you more than you will ever know.

Conquer the MS Beast

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Earlier this week I tackled my plans to set up solar lights leading to my front door. Sounds easy, right? But I had lots of unforeseen problems. I gathered all the supplies needed to make the area beautiful but knew it would take a lot of time and patience to set everything up. The picture on this post shows what I did. I still need to get some plants for the area above the lights though. Right now it is a bunch of mulch but looks pretty even without any plants in it.

I had a few bags of white rocks to fill in the area around the lights but knew it wasn’t going to be easy to lay things out. I mapped out the light placement, dug up the area where they were going to be placed and laid down weed barrier to deter weeds from cropping up in the middle of the rocks.

One of my main issues while working was that I kept falling over due to my lack of trunk control. I couldn’t stay upright on the ground while I worked. It was challenging to keep still. I scraped my elbows and even my forehead once… ugh! Pulling myself up every time I fell over wasn’t as easy as it sounds. I ended up bruising my tailbone too as I inched my way back and forth across the sidewalk.

I feel accomplished with all the work that I got done. As I was working I kept thinking that bad things aren’t just happening to you and me… they’re happening everywhere. The way I see it, if I hadn’t gotten sick with MS, I would have never met you or had the opportunity to give you encouraging words to cheer you up.

MS challenges? Pfft, they’ve got nothing on me! I’m like a bulldozer, smashing through obstacles with sheer willpower. Nothing can extinguish the fire burning inside me to conquer the impossible. No matter how tough my MS life gets, I’m the kind of person who keeps pushing forward, defying the odds.

Setbacks will happen. I see them as temporary blips on my journey to greatness. Unleash your inner resilience to conquer whatever life throws your way. You have the power within you to create a life filled with strength, courage, and unwavering determination.

We are living in such dark times. I never dreamed of all the confusion, challenges and deception that is taking place around the world today. I had such high hopes for my future but I’m finding it harder to stay strong in the midst of the battle.

There are great things ahead. I really believe that. I refuse to throw in the towel no matter what life hurls at me or how bad my MS progression becomes. I’ve got an unstoppable determination to conquer the MS beast.

No matter what happens, it will be okay

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I had a rough night last night. I’m not sure what happened but I spent my night hugging a bucket as nausea took over and I spent my time vomiting. I had a fever too and even had to turn my air conditioner on full blast for a time just to get comfortable. My stomach muscles worked overtime to empty out my system. So, now I’m empty but have yet to drink anything because last night it didn’t end well when I tried. I want a little bit of rest first before I try again.

That has never happened to me before to that extreme but I’m glad everything has calmed down a bit. I wonder if it was due to a new medication I took yesterday. It must have disagreed with me and sent my system into a downward spiral. I normally can’t take many new meds even aspirin or something disrupts my cellular response. At least I know what to avoid in the future.

That kind of thing happens a lot with me. Multiple sclerosis has put a kink in everything I do. I had forgotten how hopeless life can become when new problems happen out of the blue. At one time the difficulties had me hating everything… including life. But then my new MS friends changed everything. They understood the unusual reactions of my body. Maybe not really understood them, but they knew that they would happen and how to go with the flow.

Over time I have come to realize the life that I have. The spirit that I truly have. I may have troubles, but they won’t take me down for too long. Life is a gift. It’s special and beautiful. And life is what we make of it. No matter what happens even when it seems like the world is crumbling around you, if you have a support system with even just one friend you know that everything will be okay.

Life will go on, the sun will rise on a new day, and the rainbow will come out after the storm. No matter what happens, it will be okay. That’s my view of life right now. It may be crap at times, but everything will be okay. Troubles will come, troubles will go, pain will come, pain will go, life will expand and life will grow, I just need to make sure I’m nurturing it and filling it with hope.

Even if you can’t do something as you once could, you have to keep trying. Be calm, be brave, don’t quit on life and never quit on yourself. The world needs you. I need you. You are the reason I’m up today and sharing my thoughts and experiences. Thank you for just being you and accepting me for who I am. I’m doing the same for you. Gentle hugs coming your way… xoxo

Nothing with MS is smooth sailing

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Many people believe that those living with multiple sclerosis must be strong in order to live with the longterm unpredictable symptoms that come along with it. I see it as the way I’m coping with it because it’s the only choice I have, not necessarily a strength.

I usually end up feeling defeated, not strong. Especially when my pain reaches an outrageous level and I struggle to handle just getting through the moment. The fear that pops up in my mind is my worst enemy. It causes me to question almost everything about life… my purpose, my future, my existence and what tomorrow holds.

Nothing with MS is smooth sailing. You may feel like you’re on a roller coaster of emotions. Accepting what’s going on one day and angry about it the next. It may help to remind yourself that these feelings are normal and will likely ease with time. You will feel like yourself again as you learn how to fit your illness into your life. As crazy as it sound, what may be confusing at first starts to make sense. Give yourself time to learn how to take care of your illness.

I am in pain and deal with immense weakness every single day. I’m left unable to do many things because of it. There are different ways of dealing with all that MS throws at me. What people don’t know is that sometimes I lie on the floor in desperate need of a cold, soothing surface to help ease the discomfort from pain, neuropathy, and muscle spasms. I feel so exhausted that at times breathing feels like too much work. I don’t feel strong at all.

Sure, there are days when I feel better and try to do as many things as possible while I can. There are days when I feel stronger because I managed to rest for once. I do feel like my struggles have given me some strength to deal with the uncertainties of MS. The struggle, the pain – it’s all a part of my everyday life now.

An unpredictable life has become my new normal. When I was first diagnosed, I felt like I couldn’t make it through the hard times. I cried a lot, more than expected. I clung to the idea that things will get better. They had to. If I could just get through the current situation, I would have less of a struggle in life.

What it all comes down to in the end is that we are all simply doing the same thing… existing. I think what has helped me the most is remembering that MS isn’t going to go away any time soon, but it CAN be treated. It’s a long process trying to find what works for each person individually, but symptoms can be eased.

It takes time to adjust to the loss of your expected plans for yourself, and your feelings are perfectly natural and valid. So don’t be too hard on yourself for that.

I have found it helpful to focus on being grateful for the little things that take place. I treat them as bright spots or stepping stones to help me navigate through the uncharted parts of a life with MS.

Give yourself permission to enjoy life. Be consciously grateful for what you can enjoy in every opportunity you get. You will begin to feel happier and less broken by the negative things you can’t control.

Strength is made through the struggle. Through the experience of never giving up. Think of it this way…

It takes strength to get knocked down only to get up and keep standing.
It takes strength to not drown in your tears of pain and sorrow.
It takes strength to hold your head high when others don’t seem to care.
It takes strength to wake up each day with a smile regardless of the struggle.
It takes strength to find a song to sing when there’s no music to be found.
It takes strength to give it all you’ve got when you have nothing left to give.
It takes strength to not quit when everything within you is screaming at you “stop”.
It takes strength to look at tomorrow with hope rather than fear and doubt.
It takes strength to show your weaknesses in a perfect minded world.

It takes strength to do a lot of things, but mostly it takes strength to live.

The multiple sclerosis storm you are in

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I went to bed with rain coming down and woke up to the same. It’s a rainy day out. I can hear the pitter patter of the drops as they hit the roof. It’s definitely going to be a wet kind of day, and I have a few appointments to go to so it looks like I will probably be getting wet in the process.

Yet even though it’s raining out, I know it’s not raining because of me. It’s not my fault the clouds are dumping water out and mucking up the day. There’s nothing I can do about it either. I can’t control the direction it sends me in or the troubles it leaves along the way.

It’s the same with living with multiple sclerosis. It sweeps into your life and attempts to take you out. You do all you can to tame it and make life manageable but it’s not easy. The destruction left behind can seem impossible to handle. You try to simply make it through your day. Life has become a moment by moment experience. Some moments are good, some bad and some are downright horrible. I want you to know that MS is not your fault. Just as with a storm, you do the best you can to stay safe and weather the storm.

I like to think of rain this way: “Rain makes me feel less alone. All rain is, is a cloud falling apart, and pouring its shattered pieces down on top of you. It makes me feel good to know I’m not the only thing that falls apart. It makes me feel better to know other things in nature can shatter.” (Lone Alaskan Gypsy)

Today you may feel like you are wading your way through a storm. Clouds are hanging over head and mucking up your day. It’s dark and rainy and there’s nothing you can do about it. You may be awaiting test results or facing a family crisis, you may be drowning in financial difficulties or surrounded by loneliness, your heart may be breaking or your mind may be filled with worries and there’s nothing you can do about it…except…

You can decide that no matter the rain or darkness, you are going to have a good day. It really is that simple. Storms come and storms go. No storm lasts forever. The storm you are in, it will end and the sun will come out again. Some storms are longer than others, but they all come to an end…every one.

You get to choose whether you will laugh or cry, sing or sigh, bend or break. You also get the amazing opportunity to dance in the rain and stomp through the puddles that get left behind. No matter what you are facing, you don’t have to go through it alone. Share your umbrella with someone else.

I can guarantee you that if you take a moment to peak out from under your umbrella, you will see someone else walking in the same direction you are without an umbrella. Lift yours up a little bit higher and offer to hold it for them too. Two walking together in the rain is better than one. You could even turn it into a party and see if more people could fit. It won’t make the storm pass quicker, but it will make the time more enjoyable as you support one another.

If you just so happen to be one of the umbrella-less people right now, you don’t have to keep getting poured on. Look up. You will see umbrellas everywhere that are willing to share. Reach out and ask for help. Sometimes that can be the hardest thing in the world to do, but in the end it keeps you from getting soaked. Don’t be ashamed or embarrassed. It really is okay to ask for help. We all need each other.

Then after the storm has come and gone, get out there a jump in the puddles.

I can’t wish MS away

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I feel like I was run over by a Mack truck last night. I’m exhausted, in pain and have become frustrated at dealing with multiple sclerosis every second of every day. I’m not really surprised though. I have sort of prepared myself for the unexpected. It is what it is… is what I tell myself all the time.

I can’t wish MS away or even think positively enough for it to disappear. Some people have said dealing with it is just mind over MS, haha. I doubt they have had any issues with MS to overcome or even MS itself. It frustrates me when people spout out how to deal with a problem that they’ve never had. Drive-by Antagonists need to get a new hobby.

One thing MS has done is taught me that I’m tougher than I thought possible. When something goes wrong, which it will, I tend to bounce back…not fall apart. I celebrate the small victories that I have.

Yesterday I had the energy to collapse several boxes that my new recliner came in. I used a box cutter (carefully) to dissect the boxes so they would be able to be picked up by the local garbage collection service. I think in doing so my body is paying me back because I overdid things a bit. I’m terrible at not listening to my body and always regret it later.

So far this morning I have been able to wash my face and make a cup of coffee. That’s a great start. I am not planning much for the day so I have time to recover. I know that sounds silly. Collapsing boxes is no big deal some would say. But my body says differently.

I’m not going to sit in shame for resting. I’m going to watch something fun on TV and rest in my new chair. It has been the greatest investment I’ve made in a long time. I like how it will stand me up almost entirely and allow me to easily transfer to my powerchair.

I’ve got a new project I want to start in my yard but I will wait for another time. I will just plan it out so when the time comes I will have everything I need to get it done. I just need to take my own advice and listen to my body when it’s talking. It really knows what it’s talking about.

The ugly side of multiple sclerosis

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I hear people talking about multiple sclerosis like it’s no big deal, after all the girl down the street has MS and all she had to do was just change her diet and take some organic supplements, and it all went away. So I must be doing something wrong. Really? I wish that was true.

MS is not a figment of my imagination. It’s real and despite everything you read about it online, it’s not curable yet. Just so you know, it’s not caused by a lack of blood flow to the brain, or caused by not eating right or not spending enough time outside. It’s not even because I don’t exercise enough, have lived a bad life, or haven’t been praying enough.

If you could see the inside of my brain and spine you would see the damage in there. It looks like a battlefield with destruction all over the place. My central nervous system has been attacked by my own immune system which I call the myelin munchers.

You see, our nerves have a coating around them called myelin. It’s a lot like the wires hidden in the walls of your house that supply power. There’s an insulated coating around each wire to keep it protected.

Well, the coating around my nerves have been eaten away. As soon as they were exposed, my broken nerves started shorting out and causing all kinds of problems. That’s why my legs don’t work, my vision is blurred, my muscles spasm and twitch, and even why my body is weak.

I wear a smile most of the time but that doesn’t mean the disease isn’t there, it just means I’m doing a pretty good job at covering it up. I should win an Oscar for my performance everyday when I go out in public.

You see the mask that I wear but let me tell you a little bit about what is actually being covered up. Let me tell you  about the ugly side of MS. Too much of the world doesn’t know that it exists.

Relapsing Remitting MS (RRMS) is one type of MS. A majority of people diagnosed with MS have this type. I got to be one of the lucky ones to have a progressive form of MS called Primary Progressive MS (PPMS). Mine just gradually and continually gets worse. I don’t experience times when my MS symptoms subside or get better.

In the back of my mind I know that one day my future will be drastically different than it is today. Although today I may be moving around ok, tomorrow I may not.  I’m the same person I was before MS came along but I have learned a lot about myself in the process.

MS has taught me to be more caring, compassionate and loving towards others. It has humbled me. No one wants to be in a place where they have to use a wheelchair just to get around in their everyday life or need someone to wipe their butt when they go to the bathroom. That can be really embarrassing. Even needing help to take a shower is a humbling experience. Those are not things people like to talk about.

They don’t talk about the bladder problems that happen with MS either. Some people need a urinary catheter because their bladder has stops functioning as it should. They wear a urinary bag or pouching system every day just to empty the urine their body creates.

People don’t talk about the fact that your breathing scares you. Sometimes the muscles across your ribs tighten up keeping you from being about to get a deep enough breath leaving you gasping for air.

It’s not said enough that sometimes when you are eating, things can go down the wrong way because your throat doesn’t want to open up properly. Or the fact that you can no longer drive without causing an accident due to poor depth perception or numb limbs that make using the gas and brake pedals difficult. Or that you can’t remember thing without making a ton of notes but even with notes as reminders, many times you lose the paper you write down it on. Or that just pouring yourself a cup of water can bring you to tears because you can’t hold the cup without trembling and spilling it all over the place.

Those are the things people don’t talk about.

The thing is, I cry, I scream, and I struggle behind closed doors. I’ve been judged, stared at in public and have even lost friendships all because of MS. But regardless of everything I’m facing, no matter what happens to me or how down I may feel, I’m a fighter. Every morning I wake up in this battle. It’s not one I chose but it’s the fight I’m in so when I wake up, I come up swinging with all the strength I have.

Sometimes I’m weak and MS wins but even on my worst days I’m a winner. It’s because I never quit. I have the courage to carry on even when my strength fails me. I may never feel better but the battle isn’t over and neither is my life. I’m simply living it differently than I used to.