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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.

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.

Life won’t be easy with MS but it’s worth it

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When you get diagnosed with multiple sclerosis it seems like the world has come to an ended. For me it was something I knew nothing about. I had gone to the hospital because I couldn’t feel a good portion of my face, my vision was blurred and my right leg was going numb. I had an MRI and a spot was found on my brain that concerned the neurologist but he couldn’t determine what it was. He said I needed to be checked out in a few months to find out if I had a tumor or what was happening.

At that time I was in the middle of moving to Florida so I was hoping it was something that would just go away and my move would be uneventful. When I got to Florida it was 3 days later and I had lost vision in my left eye, was in a constant state of vertigo, the numbness of my right left was significant and had migrated to my right arm, was in the beginning stages of an MS hug and my world was coming to an end for sure.

I called a neurologist as soon as I arrived in Florida and amazingly they had an opening for me to come in. A second set of MRIs were done along with a spinal tap and a few days later the neurologist had the results. He sat down with me and said, the MRI shows over 6 spots in the brain and over 10 in the spine. I’m sorry to tell you but, you have multiple sclerosis.

I wasn’t given any information from the neurologist about what MS is, what can be done about it, NOTHING other than he said to me, “You will probably have a benign case.” What? Then he said, we will start you on Rebif and see how things go as we try to slow the progression down. That was that.

I was left on my own to figure things out and because I went to the doctor by myself I didn’t know what to ask or what to do. It was such a horrible feeling to do everything by myself. I left in a whirlwind and numb to the core.

Afterwards I dedicated myself to digging for answers and empowered myself through asking tons of questions even the hard hitting questions. After going to support groups and leaving feeling worse than when I arrived, I decided to reach out to others online with encouragement and my own odd sense of sarcastic humor rather than doctor speak and AA meeting type get togethers. I figured if I’m feeling lost and out of place then others may be too and we all just need to know that we aren’t alone. That was 10 years ago and although MS was well known, it wasn’t known enough by the public or even the doctors that are helping people with MS to cope.

It’s true that life won’t be easy afterwards. I prayed a lot and cried a lot but I made it through with a strength I never knew I had. Isn’t that weird how that happens? You don’t know you have something until you need it… and then, there it is.

You can get through anything life throws at you. I know you can. When everything crumbles down it give you a chance to build something spectacular out of the ashes. I guess the whole world is made up of things coming together and things falling apart. You never know what you may have. You may have beauty in the midst of your ashes.

Don’t lock yourself up distancing yourself from others. It seems like that would be the easy way to do things… to just shut yourself up and pull away. That’s our natural defense mechanism as humans. We build walls to protect our heart, but in the end, we find that the very walls we build are actually keeping away the people we need most.

Take a sledge hammer to that wall, start chiseling away at the concrete even if it will only remove one brick. Keep chiseling one brick at a time. That’s progress in the making.

Reach outside of yourself and do something for others. I find that when I am helping someone else in need, I forget about my own needs. It almost makes my struggle seem not so big. So, my challenge to you is to step out and touch someone. Do something to give back to others. Find a place where you can volunteer – a cause or an organization you believe in – and give all that you can of yourself, your talents, your time.

Sometimes we just need to step out of our own pain to realize that everyone has pain, and some are struggling even more than you are. A change in perspective can be the very thing that begins crumbling the walls and opening your life for a new found hope for tomorrow.

Words from my heart

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Some people live their lives in the Land of Clichés and Memes. What are they you ask? Well, a cliché is a phrase or opinion that is overused and betrays a lack of original thought and a meme (rhymes with team) is a humorous or thought provoking image, video, piece of text, etc. that is copied (often with slight variations) and spread rapidly by Internet users.

One thing to note…technically all clichés are memes but not all memes are clichés.

I have noticed a trend in people using phrases when talking about multiple sclerosis. Words that once were amazing, but have become so common that they no longer provide the strength they originally carried. Things like:

It could be worse.
Time heals all wounds.
Everything happens for a reason.

Personally, when I’m feeling bad and having a terrible time with MS, I’m not comforted with statements like: I have MS but MS doesn’t have me. That is one phrase that has become so overused that I don’t even listen to the person sharing it. It’s not comforting to me. It was cute the first time I heard it, but now that it has been so overused and worn out, it gives no benefit to my life.

The reality is…sometimes, MS does have me. Sometimes, I have really crappy days. Don’t get me wrong, I totally believe in staying on the positive side of things and looking for the good in any tragic situation, but there are times when I need space to think and grieve, and to decide for myself how I want to move forward. I don’t need words carelessly tossed out as a solution by someone who’s not even listening to the words they are throwing out.

Seriously, if you’ve ever shared a cliché or meme in response to someone dealing with a relapse or sitting in the hospital awaiting test results because you want to bring comfort to them, I urge you to never do it again. Why? Because in a moment of tears, they need time to process the chaos and would get more benefit out of a hug than a worn out set of stale words.

Why not just use your own words? The best thing anyone could say when times are at their worst are words from the heart. And for many, saying nothing at all, simply being there is all a person needs. Standing with them in the pain and holding them up when they have no more strength left to stand on their own… that does more than worn out words.

Instead of quoting from something you’ve heard over and over again, thoughtfully put together your own words filled with care, understanding, sincerity, and lots and lots of love. That’s what brings comfort. That’s what helps bring smiles to a face covered in tears. Well, that and maybe a joke or two to break the moment with a laugh…and some chocolate. Chocolate always helps.

Memory, forgetfulness and multiple sclerosis

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I woke up this morning to my pillow on the floor in the middle of the room. I’m not sure how that happened. I would have loved to have seen that pillow fight. It must have been a doozy…”take that – WHACK – and that – POW.”

I think I am closer to discovering why I’m always tired. It must be all the parties I’m having in the middle of the night with all the toys, dolls and stuffed animals in the house. We must have pillow fights too. I think they are the ones zapping my memory. This way I won’t be able to remember anything when I wake up.

Last night, though, they must have forgotten to clean up some of the evidence by leaving a pillow on the floor. I wonder if they are the ones that drink my coffee too. I will make a nice, hot, perfect cup of coffee and the next thing I know…the cup is empty and I’m sure I didn’t drink it. I’m absolutely positive of it.

I’ve had a few other things disappear too: my favorite sweater, my car keys, my cell phone, towels, and the TV remote. The other day I even lost the eggs a friend brought me. He had a dozen eggs for me since his hens are laying now. When he left, I couldn’t find them. What? How did I do that? I had a few minutes of egg hunting but I found them on my entryway table. I don’t remember putting them there.

Just the other day I was taking a shower, washed my hair but when I got out of the shower I had a head full of bubbles. How did I wash my hair and forget to rinse myself off? That happens a lot for me. Either I wet my hair and forget to wash it or have the suds still in and forget to rinse before I shut the water off. I do all my memory tricks to try and remember but I seem to fail at it most of the time. Sometime I even forget to brush my teeth while I’m in the shower even though the toothbrush is right in font of me. Ugh!

I was writing down a list of things I needed at the store yesterday. I had the list half written, got distracted and went into the bedroom to get my shoes but when I returned my pen was gone. Poof. It just disappeared. I had to get another pen just to finish my list. I still have no idea where that pen went but if I ever go shopping without a list in hand, things don’t go very well for me. I NEVER remember what I’m there to get and always return home having forgotten why I actually went there in the first place.

I think a lot of my memory problems are due to my lack of sleep. I wake up exhausted and go to bed exhausted. I know I’m getting closer to solving my memory problems and forgetfulness. I will let you know when I find out what is going on. I would love to have a few hours of real rest to get my brain a bit more organized.

Now, where did my coffee go? It was right here beside me. Seriously, it was. I’m not making this up. It must have gotten sucked into a black hole. I think I may be stuck in some weird space-time continuum. Maybe I’ll be the one to disappear next? Ahhhhhhhhhhh

Whether you win or lose, at least you know who you are

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I actually struggle with a daily life of multiple sclerosis and all the unpredictable circumstances that threaten to overwhelm me. Some days I struggle just to get out of bed in the morning. Many times I don’t feel like doing the things I know I need to do which means they don’t get done. Lately for one reason or another MS has been winning the struggle.

Like yesterday I kept putting off taking my trash out and now I’m too tired to even think about it. My motivation just jumped out the window and I don’t even have the strength to chase it down. Before I go to bed tonight I have to take it out because trash pick up is tomorrow morning. We’ll see how well that goes. I wish I had little helpers for days like this.

It’s been below freezing temperatures here so I think that has something to do with it. My muscles just don’t work well with freezing temperatures. They have a tendency to seize up and getting them moving takes lots of extra work. Sometimes work that my body can’t seem to find strength for.

Discouragement sets in and rising above the funk is terribly hard to handle. I hate when my emotions get out of whack like that. It happens more than people would believe. I can go from laughing to crying in one second flat.

When I think about the circumstances, people, and events happening around me they are all manageable when I take them in little bits at a time. I have to be cautious so I don’t get overwhelmed. MS hasn’t changed, life around me has. I need to stay focused on what’s important, I need to look out for myself and I need to not feel guilty or get upset when things don’t go as planned.

I know that’s not easy. It actually takes a lot of hard work, but work that’s worth it. Next time you feel drained or emotionally out of whack, remember that you have a choice. You can wrap yourself up in excuses and self-pity, or you can choose to reach out of yourself and find the strength you need to keep going and rise above your circumstances. You’ve got it within you to do this. I believe in you. If I can do this… so can you!

Listen to your body and don’t overdo it

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My favorite time of year is finally here. My lawn is getting greener and greener due to the rain we’ve been having. It is begging to be cut. I’m actually feeling good enough to run my riding mower and get out in the sun for my adventure of the day but it’s raining again this morning.

I can already tell it’s going to be easier to manage a riding mower without a suprapubic catheter urine bag to lug around. I’m really liking having a urostomy. I think it’s one of the best surgeries I’ve ever had. It’s so freeing for me. I can move about without concern of what’s coming with me. And the pain is finally over. Yippee.

Yesterday I pulled out my weed whacker to edge my driveway and sidewalk to get the grass under control. I was able to cut the time in half from what it took me last year. I moved about better. I use my old powerchair to ride around the property. I call it my powerlawnchair.

There are a lot of projects I want to get done this year but I know I need to be cautious and not try to tackle them all at once. I’m going to take them one at a time and give myself lots of breaks.

That’s the important part. Listen to your body and don’t overdo it. You know your body best. I have to remember to stop before it starts to scream at me. If it screams, I’m done for days and days.

My right side is still giving me difficulties due to increased weakness but I’ve gotten pretty good at doing everything left handed. Even when raking the lawn I actually rake it using my right shoulder and left hand. Odd combination but it works for me. Sometimes you just gotta do what you gotta do… no matter how weird it may look.

One things for sure, you will always find me out in my yard doing something to beautify things. My next project is to replace the solar powered lights around my front entranceway. It always looks so nice all lit up at night. I bought some replacement ones last year all ready for me to get out and tackle the task.

I love living by myself even when days are hard. I love looking out my windows at all of nature that surrounds my house as the deer and bunny rabbits trapes around. I won’t stop loving life regardless of how hard things get or how impossible life becomes. I will always find something to make me smile!

Ready for surgery

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My bags are packed for a 6 day hospital stay. Not my choice of a resort stay but at least I will be taken care of while recovering from surgery on Monday morning. I have to be at the hospital at 8:00 AM, Feb 6th. Surgery will take about 2 1/2 hours. I will write to keep you updated while in the hospital. Don’t know what day I will post something but hopefully you will hear from my by the 7th.

I have to empty my bowels on Sunday starting at 2 PM. I have to down 4 litters of Gavilyte-G. Lemon flavored… and stay by the toilet so I won’t make a mess rushing to the bathroom. Ugh!

For those who don’t know my urologist has recommended the removal of my bladder and a stoma made with a part of my small intestines to empty my urine into a pouch on the outside of my stomach area. I won’t have any more stones to deal with. No more UTI’s. No catheters to change. Just a urine bag/pouch to change. It’s supposedly not be painful once healed. My urine will just be an open flow outside of my body. Kidneys will work the same. Just no bladder.

I’m a little nervous about it and hope I will heal quickly and learn quickly how to manage dealing with a urostomy bag. I’ve met with the nursing staff that will be teaching my after surgery how to manage everything. They are really nice and have already given me some products to play around with to get a little familiar with what I will be doing.

Keep me in your prayers. I will be doing the same for you. Hugs…

You deserve more and better things in your life

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You deserve more and better things in your life than you realize even though multiple sclerosis seems to have gotten in the way of you being able to achieve it. You have it within you to be the leader of your own life.

Take a moment and think about how your friends make you feel. Do they lift you up, or do they bring you down? If you feel bad about yourself after hanging out with a certain person, it may be time to say goodbye. Believe in yourself enough to put on your crown and hold your head high. You can’t wear your crown with your head down. Wrong friends will do that to you.

Learn to love yourself. There will be times you will have to apologize and forgive yourself for not being kind to YOU. Sad to say, you are your own worst enemy. Give yourself a pep talk by speaking positively to the situation. Words have power. If you keep thinking you’re a failure, that’s exactly what you’ll become. If you keep telling yourself you’re going to make it, you eventually will. That’s because our perception creates our reality.

Be kind to yourself. Never apologize for living your life your way. To expect no difficulties in life, whether through your own actions or sheer circumstances, is unrealistic. Difficult times happen. Allow yourself time to really look at your situations for what they are. Develop a habit of self-reflection. Try to quiet your mind and get rid of your biases first.

Do you speak to yourself by putting yourself down? Think about it…do you call yourself names out loud? Names like stupid, idiot, or worse? My mom used to say if you don’t have anything nice or useful to say, don’t say it. That includes how you speak to yourself. Try this: before you criticize yourself, think of 3 genuine compliments you can give instead. You’ll start feeling great about yourself. Try to talk to yourself like someone you love.

Prepare for a journey.