A monster called multiple sclerosis

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Growing up I remember being afraid of monsters. They lived under my bed and were going to eat me. I had to make sure not to hang my feet or hands over the side of my bed while I slept. Somehow my magic blanket protected me. It seems monsters are afraid of blankets.

As a grown up, my monsters changed. They still try to scare me but in different ways. I have to be sure to keep my heart and mind protected from their scare tactics. That’s where they try to gain control over me.

Fear is a powerful thing. It can paralyze you and steal your peace.  I found the biggest thing when it comes to monsters is to be careful in how you look at them. The monster called multiple sclerosis had crept into my life and tried every tactic it could to scare me and keep me from living.

What if I end up in a wheelchair? What if I die early? What about all the pain and uncomfortable moments that will happen? So many unanswered question that have a potential of scaring anyone living with a chronic illness. But the what if’s aren’t guaranteed and most of the time they don’t happen as bad as thought or even at all.

At first fear was good at keeping me from doing things that could hurt me but then I realized I was able to do more than I thought. The only voice I should be listening to is the one in my own heart. No more shadowy whispers or monster growls to keep me from doing things or from being myself.

Haven’t we all allowed fear, at one time or another, to become bigger than the reality of life itself? As a child, I allowed fear to take from me, but what was I truly afraid of? A monster, a shadow? Really?

There’s always going to be monsters in this world. It doesn’t matter where you are or what you’re facing but I promised myself I would never let monsters scare the life out of me again. And that’s how I live my life. Just remember that it’s ok to be sad and it’s okay to be afraid.

I still catch myself thinking, “There is always tomorrow. And what will tomorrow bring? Will it have monsters and creatures and scary shadows?” I can’t tell you what tomorrow will bring… but tomorrow doesn’t have to be scary when hope is lighting the way.

When you gotta pee

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Sometimes I laugh at myself, like yesterday when I accidentally dropped freshly ground coffee all over me and the kitchen floor. Laughing about it was so much better than crying. Besides, tears mixed with coffee grounds is therapeutic, at least it seemed to be for me as I laughed vacuuming it up. All I kept thinking was spilled ground coffee sure do suck! haha

I have accidents all the time. I trip, drop things, fall, misplace items, 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.

Since surgery at the beginning of the year to remove my bladder, a stoma was created from a section of my small intestines to allow my urine to be managed. I wear a pouching system that is attached to the stoma around my belly area. Even though I can’t pee in my pants like before, I still have accidents. Not the oops, I peed in my pants kind, more of the oops, the pouch adhesive has loosened causing it to leak unexpectedly all over me.

I would much rather have a leaking pouch that I can tame by holding my hand or a cloth over it until I can remove it and replace it with a new pouch than face a flood because I wet my pants. I have a bit more control over a leaking pouch than I ever had over my bladder. When I had to go, I had to go. I had no control over the muscles that made my bladder function.

I’ve gotten really good at changing my urine pouch and can have a new one attached to my stoma in about 10 minutes. For me, I change the pouch system about once every 4 to 5 days. It took time for me to get used to changing it and a lot of practice trying out different samples sent to me from the companies that make pouches, but I finally found the ones that seem to work the best for me.

One good thing about my life now is that I don’t have to rush to the bathroom every couple of hours due to a faulty bladder. Now I just routinely empty my pouch as it fills up. 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 to go pee. I normally attach a night bag to my pouch so I don’t have to empty it while I’m sleeping.

Accidents are going to happen no matter what I do. Let’s see if I can make it through the day today without one, but if I do have one I will make sure to find some fun and joy in the process. I hope you are able to do the same thing. Don’t take life too seriously.

Remember that you weren’t given an instruction manual along with multiple sclerosis. You can only do the best you can with the information you have at the time. So, don’t be so hard on yourself. You’re a work in progress.

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.

MS can cause memory loss

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We live our lives in a crazy, seemingly unending fog. A fog filled with fears, doubts, unemployment, financial uncertainty, strained relationships, health problems, depression, confusion…so many difficulties and troubles. These events are common as you get older but it also happens due to multiple sclerosis.

Cognitive function is related to the number of lesions and the location of the lesions on the brain, as well as brain atrophy. The changes generally progress slowly. They are also unlikely to improve dramatically once they have begun.

Since the areas of damage are different in different people, the effects on cognition vary from person to person. You may have trouble remembering things or concentrating. Planning events can become difficult because it may require multitasking. One of the worst is when you can’t think of the word you are wanting to say so you end up playing an impromptu game of charades or you completely forget what you were saying right in the middle of a sentence. I know for me it can end in tears because things are becoming way to complicated for something so simple.

Sometimes you may feel like giving up because you don’t have the strength to stay afloat any longer. How many times have you felt like throwing your hands up and giving in? How many times have you felt like quitting because life was simply too hard? How many times have you lost sight of where you are going and not had the courage to hang on?

For me, I realized I woke up today and remembered my name. That’s a great accomplishment. I was able to brush my teeth without making a mess. I even got dressed instead of staying in my PJs for the day. All huge triumphs.

I want to encourage you today to never give up. Refuse to let your problems beat you. There is always a way to get through the difficult times. Always! Those times when you feel as if you are drowning and there is no end in sight, don’t let your inability to see the end stop you. Keep going. Keep trying.

When the struggle gets tough I want you to know that you can make it. I know you can. Fight through the fog, dodge the dizziness that happens, keep your focus on the end even when there is no end in sight. Don’t allow your inability to see stop you. Keep pressing forward one step at a time. You are closer to your victory than you think.

A message to the disabled with MS

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What I have to say is by no means groundbreaking but as someone who lives with sight loss, bladder disfunction, the inability to walk, and unpredictable tremors, I have a good idea of what a life with a disability can bring. There are certain things that I could have benefited from hearing myself in order to feel less alone.

Having a disability can introduce a unique set of challenges that you have to go through and some you never even imagined you would be dealing with. Whether you’re living with a disability yourself or if you know of someone living with a disability, perhaps reading on their behalf, whoever you are, I hope you can benefit in some way from what I have to say.

1. YOU ARE NOT A BURDEN

There have been many occasions when I felt like a burden. I would feel like I was a pain when I asked someone to help me out. At times I thought my impairments were an inconvenience for others, but looking back now, I know they are not and I want others to know that as well. There are many ways of adapting these days and there are so many people out there who are willing to help. You will never be a burden.

2. IT’S OK TO FEEL LIKE GIVING UP

Having a disability can leave some people feeling anxious, broken, lonely, isolated and scared. I say this because I’ve felt all of them for myself and they have made me feel like giving up. Having a disability can be a long and tough journey which requires a lot of adapting and I know of so many people connected to disabilities in some way who have felt like giving up.

I want you to know that feeling like this is ok. It’s normal, but if it gets too much, it’s important to seek help. Once I started to realize that the positives were coming closer to my reach, I learned how powerful they can be – there’s always a glimpse of positivity even when you least expect it.

3. DON’T BE AFRAID TO ASK FOR HELP

Asking for help is one of the best things you can do, if only my stubborn self realized the benefits of it sooner. I had a great lack of confidence which left me struggling with some thing because I didn’t want to ask for help.

Please don’t struggle. Make the most of the help that is offered to you and if you’re finding something difficult or tricky, a simple question asking for help can make things so much easier. I still need to remind myself of this very thing sometimes.

4. IT’S NORMAL TO FEEL CONFUSED

Living with a MS can be incredibly overwhelming at times. You’re introduced to an abundance of tools, mobility aids and equipment that people think might help and it can all seem very confusing. After I was diagnosed, everything seemed confusing. The future seemed unclear and it was a lot for me to come to terms with it.

But I want you to know that if you are also feeling confused about your disability and what it means for you and your life, it’s a completely normal feeling and, in time, that confusion will start to fade as you start to learn what you need, what help is the most necessary for you and how you can navigate the world with a disability in the most accessible way.

5. A MOBILITY AID CAN BE YOUR KEY TO INDEPENDENCE

Oh, how I used to hate my cane – the thought of going out in public with it used to make me feel incredibly anxious. But once I picked my cane up I slowly started to realize that it could be my key to the independence that I so desperately wanted and needed. Using a walker did the same thing along with a wheelchair.

It can be scary, it can seem daunting, yes sometimes incredibly daunting but if it gives you the independence you want or need. Doesn’t that outweigh all those other feelings? Embracing your mobility aid, whatever it might be, can be one of the most important steps in the road to acceptance and independence.

So, I might still have a few stares and glares but do they matter in the grand scheme of things? I’m out there on my own, being the independent person I want to be and you can be too. If you’re happy and confident when using your mobility aid then no one else’s opinion or judgement matters.

6. YOU CAN GET THROUGH THE DIFFICULT TIMES

You might feel defeated at times, you might feel like you’re swimming against the tide but you can champion and overcome the challenges that come your way. A disability seems to open the door to a whole new set of challenges, as if you don’t have enough to contend with already, right? But those challenges are there to be overcome and you are determined and strong enough to do just that.

Real life isn’t Hollywood. I will always have my bad days and so will you but that doesn’t mean you can’t get through them. You can come out stronger on the other side.

7. FIND YOUR UNIQUE WAY OF EXPRESSING YOURSELF

I’ve found my passion since starting Positive Living with MS, writing and blogging is my unique way of expressing myself and how I feel, but yours might be through art, music, crafts, or even building models or gardening.

Discovering that passion can potentially be invaluable, it gives you the opportunity to express who you really are and show that to others. It can be your lifeline when you’re finding things difficult. It can be your escape.

8. YOU CAN ACHIEVE AMAZING THINGS

Your disability shouldn’t be a barrier to achieving your goals. There is always an alternative way to getting where you want to be in life. If one road leads to a dead end, find another one and follow it until you reach where you want to be. People living with disabilities have dreams, hopes, goals and aspirations just like everyone else and you can achieve amazing things, never let anyone tell you otherwise.

9. DO WHATEVER IT IS YOU WANT TO DO

It’s your time to go out there and have fun. There are people out there who think that a life with a disability is a completely negative one, that having fun or achieving your goals doesn’t seem to tie in to a life with MS but it’s definitely not the case.

Disabilities can be restricting in some aspects but it doesn’t mean that you can’t go out there and have a good time. Do whatever it is that makes you happy.

Yes, there are people who won’t understand, there are people who will judge, who will make snide remarks and who will make incessant attempts to get you down but there are also people out there who will pick you back up again, who will support you, people who will have your back no matter what. It’s those people you need to focus your energy on.

10. YOU ARE NOT ALONE

This is one of the things I needed to hear the most a few years ago and perhaps one of the most important messages we need to be told. Disabilities can be isolating, especially for newly diagnosed people who are trying to come to grips with their diagnosis, the adaptions that need to be made and all the terminology that seems to come from every direction.

It can feel like you’re the only one experiencing what you’re going through. It can feel like no one around you understands the situation you’re in and how your disability is affecting you.

You might feel angry, frustrated, resentful, isolated, lonely, like you’re being left behind and maybe all sorts of other emotions. Please remember that even though it might feel like a lonely place right now, there are so many people out there who are in the same boat as you, who might be feeling exactly the same as you are right now, how you have felt in the past or how you might feel in the future.

The feeling of being ‘alone’ is more common than you think but it’s an emotion felt by thousands of other people and it’s what a lot of us need to remember. You are not alone.

Living with a disability can prove difficult no matter what your age. If you’re finding it difficult, I want you to know that although it can feel like life is throwing all sorts of hurdles your way, they can be hard to jump over but not impossible.

Although it can be difficult, a life with a disability can also be rewarding, it gives you a different perspective, it can let you see the world in a different way to others and help you to appreciate the little things in life.

Believe in your abilities, focus on what you can do rather than what you can’t, surround yourself with the right people, grab hold of the positives, express yourself in whatever way you wish and never let anyone tell you what you can’t do or achieve. You are capable of so much more than you realize. Take it from someone who knows.

Change your struggles into something positive

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Multiple sclerosis just keeps happening to me and no amount of meds, sleep, CBD oil, meditation, chocolate or coffee seems to be able to stop it. I’ve even tried non-GMO, user friendly, vegan ones but no help. Don’t even get me started on using all the proven wives-tale wonders, conspiracy theory miracles and Dr. I-got-the-cure know it alls out there.

How can MS, something as simple as 2 letters, be so difficult? That’s beyond me. After all it’s just 2 letters in the alphabet. It’s not a sentence. But lately I would disagree. I’ve been put in solitary confinement, experienced sleep deprivation, dealt with torture by every ill acting nerve in my body and was even handed a restrictive diet of soft-foods-only due to a lack of muscle control. Ugh, what gives?!

That’s the crazy thing about MS. Whichever nerve it attacks is the cause of the problems for the body. If it attacks the legs… those are the ones hindered. If it attacks the eyes… yep, they have difficulties. If it attacks the bladder… troubles abound. Each person dealing with MS is different because with the trillions of nerves in the body it’s a crapshoot as to which one gets hit. Every day is a risky and unpredictable nerve venture inside the body.

True story, yesterday I wanted something cold to drink because it’s been getting hot here. I decided to make a smoothy because I had all the ingredients needed. Blending everything up makes it easier for my jaw muscles. For me, eating something as soft as a banana can actually be difficult.

I put everything in my blender to smash away, but once it made it look perfectly frapped I couldn’t twist the lid off. My hands were too weak. Weaker than my jaw was. It was so depressing that for a moment I leaned over the counter and a few tears fell. Why me? Ugh!

Then I took a deep breath, grabbed ahold of the lid and twisted for the upteenth time. Amazingly enough it came off. Thank goodness. I didn’t want a perfectly blended smoothy go bad.

I poured it into a glass, got comfortable in my chair and enjoyed a tasty drink. My jaw was really thankful everything was crushed up. It hit the spot…even with a few tears and several worn out muscles.

When I’m having a really bad day I remind myself that life is all in the choosing. Every day we are faced with decision. We may not be able to choose the struggle we are dealt, but we do get to choose how we will respond to it. BTW, tears are allowed.

In life, things happen around us and things happen to us, but how you choose to react to what’s going on is what really matters. Life is all about modifying, readjusting, and adapting in the struggle. Change your struggles into something positive. I know you can.

Taking the easy way

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I had a strange day the other day. I’ve been getting ready for a new living room set that I’m supper excited about. I purchased a blue sofa and love seat along with a beautiful glass top coffee table and matching end table. Most sofa sets are either grey, brown or beige so to find one that was a striking blue color called ink sold me on it. It’s a medium blue much like royal blue and it’s supper striking.

One of the pieces I’m excited to get is a motorized recliner which allows me to recline but also has a lift in the seat making it easier for me to get out of. It has a massage setting too and a way to plug my computer and phone in for charging. The greatest thing about it is that it’s made for someone over 6′ tall so it will be comfortable for me. No more having my feat hanging inches off the end of the foot rest.

I got a notice that the recliner had been delivered to my front door but when I looked, there was no box at my door. I let the company know that I didn’t received it so they issued a refund for me. I told them that I would be reordering the chair because my heart was set on having it.

Here’s the strange thing that happened. Yesterday someone came to my front door to tell me that they received a package that was mis-delivered to them with my name and address on it. They live streets away from me. The box says 1 on 2 for a recliner. Box 2 will arrive today. I’m excited. The company will have to make sense of the refund and the new order I’m wanting, but at least I won’t have to wait weeks for a chair to come. It’s already here. Somehow things worked out for me.

You know, I was thinking about all the things we use to help us live an easier life when a disability comes along making everything more complicated. A chair that helps lift you up…now that’s amazing to me. Funny thing is many items aren’t designed for the disabled. I’m always looking for items that help  make life easier. Not because I’m lazy but because everyone needs help even if they don’t say or think they do.

Am I trying to take the easy way out by using a chair that lifts me up to help me stand or transfer to my wheelchair? Since I can’t just stand up like a healthy person, the help saves me time, energy and at lots of tears, so yeah… I’m taking the easy way. Live in my body and let me know if it’s really the easy way. It’s actually quite complicated… never easy.

The way I see it is the more options I have at helping me to do something means hope and I need lots of hope living with MS. Having hope is having an expectation that something good will happen in the future or that something bad won’t happen. It won’t solve all of society’s problems but will bring you some added sunshine in the darkness.

I see a few rays of sunshine lighting you your day today. Don’t get too discouraged when you look around. There’s always hope. I’m believing for the best for your life today.

To those not living with a chronic illness

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Whoever you are, I fear you will never learn the injustices people living with a chronic illness endure all because they are facing the unknown and the unseen as their body is destroying itself from the inside out.

I fear the gifts and strengths a disabled person  carries within them will be dulled before they are able to share them with those who need them the most.

I fear you will cease to help a disabled patient in need because your own life is more important than the needed medical equipment, meds and even vitamins or supplements that would greatly benefit their lives.

I fear you will never know what it’s like to be disabled, abandoned, homebound, and not believed when sharing their troubles with those closest to them who should be their support…but aren’t.

I fear you may fail to see the worth of the disabled because it’s not a popular thing to do and it disrupts your day too much.

There’s nothing I can do to wake people up. Many won’t read this and others will simply discount it as nonsense, but one thing I know is that regardless of what troubles happen in my own life, whatever disabling symptoms arise and consume my day, I won’t quit. I refuse.

Positive affirmations that will change your life

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There’s so much evil happening in the world today that you don’t know who to trust due to the amount of disinformation taking place everywhere you turn. Sadly the spreaders of disinfo are determined to purposefully confuse, agitate and divide people. Don’t let their words and actions negatively impact you.

Whether you’re dealing with stress, need a confidence boost, or simply want to give yourself a pep talk, positive affirmations are a powerful tool for rewiring your thoughts and shifting the chaos in your day. They are phrases that are meant to uplift and inspire you to be your best. Repeating self-selected phrases can do wonders for your day. I find if I read through some of my favorite ones, my day gets better. It doesn’t change my troubles, but it changes me and what I’m focusing on.

One of the beautiful things about affirmations is that they are super easy to work with and you can choose the ones that speak to you—whether you found them on a list or you made them up yourself. It’s important to look for affirmations that really resonate with you and the person you want to be. I find writing them on post-it notes and placing them around the house for me to see helps. I have some in my bathroom on the mirror, some on the refrigerator and some even in my van on the steering wheel.

Repeating positive affirmations, mantras, and meditations are all great ways to prime the brain to make a change. The point of affirmations isn’t to magically cast a spell on your life but rather to start shifting you into a more positive mindset so you’re better able to line up your thought to help clear the chaos around you.

It can be easy to get caught up in negative thought loops, but with a few personalized and empowering affirmations paired with some honest self-reflection, you can slowly but surely start to unlearn and reshape those patterns.

Some Positive Affirmations:

  1. I release all fear that tried to tell me I should be somewhere different.
  2. I need only focus on right here, right now.
  3. I can get through difficulties.
  4. I’m doing my best.
  5. I am enough.
  6. I offer myself rest and relaxation.
  7. I am deserving of my own love and care.
  8. I care for myself because I love myself.
  9. My self-care is a priority.
  10. I treat myself as I would a dear friend.
  11. I am so grateful to be alive.
  12. I’m going to have a great day.
  13. Today and every day I am blessed.
  14. No challenge is too great for me.
  15. I wake each morning with a smile.
  16. I am strong.
  17. I am capable of overcoming anything.
  18. I am resilient.
  19. I can get through hardship.
  20. I am a wonderful person.
  21. I love who I am.
  22. I am courageous.
  23. I learn and grow through difficulty.
  24. I always pick myself back up.
  25. I will press on and go forward.
  26. I release what no longer serves me.
  27. I am proud of myself.
  28. I am living with purpose.
  29. Every day is a gift.
  30. Every day I embody the best version of myself.

Multiple sclerosis is your reality

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I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and challenged in every area of life, and you feel the weight of simply getting through today to be daunting. Laundry has piled up and errands are on hold as you sit alone feeling like you’re about to break.

You don’t feel very brave right now. Sure, when you go out the door with a smile plastered across your face, you are brave. But that’s a mask you wear out in public to cover the pain. Here you sit, alone, and the mask comes off. Your thoughts are running wild and the tears begin to fall.

Where’s your brave when you feel numb to the core? Where’s your brave when all you see is clouds before you and not one ray of sunlight can be found? Where’s your brave when you run into walls, trip on invisible obstacles, can’t walk across the room, choke on air, your body trembles, and you drop everything you try to hold? Where’s your brave when you feel defeated? Where’s your brave then?

I want you to know that you are brave even when you can’t feel it. There truly is strength in you. A strength so amazing that even you don’t know it’s there. You’ve held on this long…that is brave. I know it’s terrifying. I know it’s not easy. You don’t see it, but I sure do. You are a brave multiple sclerosis survivor in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, pain and uncertainty…and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s all you need to do to lighten the load. Let it go and find your brave today, because you are brave! I can see it.