Posts

To those not living with a chronic illness

/3 Comments/in /by

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.

An MS life isn’t so simple

/8 Comments/in /by

Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jelly and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

You didn’t cause multiple sclerosis in your life

/12 Comments/in , /by

You didn’t cause multiple sclerosis in your life by the foods you choose to eat or not eat, by the supplements you choose to take or not take, by the DMTs you choose to take or not take, or even by the prayers you choose to pray or not pray. You didn’t do anything wrong or even live a bad life that brought about such terrible circumstances. That’s all just a bunch of crap… and it makes you feel like crap as well. No one deserves to be made to feel like that.

You didn’t cause it, can’t control it, and can’t cure it. It’s not your fault if other people leave you because of your illness or even because of how you are dealing with it. It’s not your fault that you are sick. Don’t even let that thought take ahold of your heart.

You are so much more than MS. It’s something you have been diagnosed with… and that’s all. It’s not your name and not who you are. Don’t forget that.

You don’t have to hide the fact that you have MS in order to make others comfortable and you don’t have to be an inspiration to others every time you share your life story. Many times you just want to scream and wish others could see just how difficult an MS life is. They never see the pain that overwhelms you, the despair that sets in at such inopportune moments, the hopelessness you feel at times, or even the tears you wipe away when no one is around.

You’re allowed to stay in bed if you can’t get up to do anything but go to the bathroom. You’re allowed to have bad days. You’re allowed to wish life was different. You’re allowed to miss the old you and all the things you used to be able to do.

But one thing you have to do after a short time of pity-party moments is remind yourself just how amazing you actually are. Take a break from life, take a deep breath and take care of you. That’s not being selfish, that’s caring and being kind. As airlines like to remind us, it’s important to put on your own oxygen mask before helping others do the same because if you run out of air, it becomes a lot harder to help anyone, including yourself. Treat yourself as a friend.

Home should be your safe place, your sanctuary. Consider filling yours with what brings you joy, whether it’s live plants, pictures of happy memories, or art you love to look at and remember to smile. It always helps.

You will get through the tough times and come out with a strength that you never realized you had. You’re getting stronger even right now. Hang in there. You got this.

A fearless warrior

/5 Comments/in , /by

It makes me sad to think about all of the turmoil and chaos that is surrounding us in the world today. No matter where you are, you can’t seem to get away from it. It’s in front of you when you turn on the news, when you get online to try and find something worth reading, and even when you turn on the radio for a pick-me-up song. Such despair and uncertainty abounds.

I don’t have any answers for what is taking place in the world other than don’t react in fear. Fear is the worst thing you can ever hold on to. I’m not talking about fear of public speaking, escalators, or even spiders. Those are some my legitimate fears but not something that keeps me awake at night.

No, it’s deeper fears like war, famine, and even early death than will disturb any persons inner peace. I have found that I need to become fearless. Why? Because fearless people are not afraid to be afraid. They are able to take their fears as a warning sign and use them to get a better perspective of what is actually taking place around them… both the irrationally perceived problems and the real ones.

Every person experiences fear differently. You are not alone in this. Fear actually affects more people than the common cold. That’s because it’s a human experience. If I let fear rule me I would be cowering in the corner counting down time to my last breath. One thing you have to be mindful of is don’t let fear prevent you from actually living. That shouldn’t happen.

Fear reminds me that there is beauty all around in the shadows. It’s just hiding hoping to not be discovered. The beauty in the shadows is worth fighting for. No matter how bad thing can get, I will rise above the situation and be triumphant. I’m reminded that I’m a warrior regardless of what anyone else thinks. That I’m not going down with the ship. That I’m strong, mighty and capable of anything I put my mind to. And so are you. You’ve got this. Don’t lock yourself away in fear. Come out into the open, turn your face to the sun… and live. There is hope for a better day.

When it feels like everything is over, when the last bit of hope and light starts slipping away faster than you can chase it, it’s at that time you find you are able to gather enough strength to carry on. It’s that little voice you’ve been hearing in the back of your heart and mind to not quit and never give in. Listen to it. It knows more than you realize. You’ve got this. Become a fearless warrior with me.

Listen to your body and don’t overdo it

/4 Comments/in /by

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!

I’m fighting a monster called multiple sclerosis

/1 Comment/in , /by

I have learned more about myself than I ever thought possible because of a monster called multiple sclerosis.

I’m braver now even though I didn’t know MS existed in my life until I was in my 40’s. I fought through mind numbing pain, muscle weakness and tears. I fought it daily with a sword in my hand while yelling, “Hiyah!”.

I’m stronger now because I had to be. My choice was fight or give up, but I’m not a quitter. That’s just not a part of my DNA. So fight, I did. I learned how to use a cane, then a walker and now a wheelchair. I learned what foods benefit my body the most and what supplements help me to cope.

I’m happier now because I’ve discovered what really matters most in life. It’s crazy how that happens. You face down a beast like MS and discover a strength that you didn’t even know you had and that many things in life aren’t really that important anymore. Hold onto true friends and family, and let the other things go. You don’t need the extra baggage. It will only weigh you down and hold you back.

I stand taller, figuratively, because I am a survivor. Yes, there will be struggles and pain. There will be times I may be fearful of tomorrow or even of the next step I need to take, but I will push to the end and give it I’ve got.

Remember, you are not alone in this fight. The great Rocky Balboa said, “The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”

Come fight with me.