There are days when I feel weak and beaten down by life

There are days when I feel weak and beaten down by life. Where the continued fight, day in and day out, wears on me to the point of weariness. You see, even positive people have hard times. No one is immune to life’s difficulties or to the emotional strain that comes along with them.

This week has been one of those weeks for me. A week of frustrations, battles, and struggles. A week of the unexpected. You would think I would be used to those kinds of things by now…the continual speed bumps and road blocks in life, but not even multiple sclerosis prepares you for that.

Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from physical problems, to financial difficulties, to emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything is going to be okay.

When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.

Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some doozies too. Things that even the bravest and strongest of warriors would collapse under.

Yet today, looking back, you see the strength you gained through the struggle. Things may not have worked out as you planned and you wouldn’t want to go through them again, but here you are…stronger, wiser and more resilient because of it.

Today may be a day of tears and pain, but trust me when I say hang on because you have an amazing future ahead. There is still a lot for you to accomplish, new people to meet, things to do and a greatness in your path. You are going to make it and come through with a strength you would have never gained any other way.

Sometimes Living with Multiple Sclerosis Can Get Overwhelming

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis…

Read today’s post at MS Conversations:

http://blog.mymsaa.org/sometimes-living-with-multiple-sclerosis-can-get-overwhelming/

Things often said to people living with Multiple Sclerosis…that shouldn’t be said

Those of us living with Multiple Sclerosis get some interesting responses from people when they find out we have been diagnosed with MS. I actually think most people mean well, they just don’t think before they speak.  It can be frustrating, I know. Hopefully the more we talk about these things the more people will learn that we need care, understanding and support more than anything.

Things people shouldn’t say:

1. You need to be more positive. You would get better if you had a better attitude.

2. You shouldn’t drink coffee, cola, wine or really anything except filtered water.

3. I read about this diet that cures MS, why aren’t you on it?

4. You should be eating gluten free. Gluten is your problem.

5. Are you contagious?

6. You need to stop eating meat.

7. What did you do wrong to get MS?

8. I heard a vaccine causes it. You shouldn’t have gotten that vaccine you had when you were 2 years old.

9. You need to get out of the house more.

10. What about that celebrity with MS? He’s fine…why aren’t you?

11. Have you Googled MS?

12. Why don’t you try a different medication? Something that doesn’t have as many side effects and that will actually stop MS?

13. But you were fine yesterday.

14. Are you sure you have MS? It’s all just in your head.

15. You should join a fitness club. Exercise is all you need.

16. It can’t be that bad.

17. You don’t look sick.

18. Oh, my aunt had that and she’s fine now…or dead, I can’t remember which one.

19. Trust me, I know EXACTLY how you feel.

20. Stop using MS as an excuse. You are just trying to get out of work.

21. Try this vitamin…it helped my cousin’s uncle’s sister’s friend who has MS.

22. You’re just stressed.

23. That healing preacher prayed over you and you still aren’t healed. You just don’t have enough faith.

24. There’s a trial medication out now, why aren’t you on it?

25. Why are you so tired? You can’t be THAT tired, you slept all day yesterday.

26. You’re just not doing everything you can do. You must not want to get better.

 

 

change

Put on your Multiple Sclerosis superhero cape

I’m sitting in my favorite chair this morning as I write my thoughts down to start the day. My favorite throw blanket is lying across my lap and out my living room window I can see deer munching on some clover in the back yard. With coffee in hand, I smile at the beauty of a new day.

I enjoy my time of quiet solitude in the mornings. I use that time to collect my thoughts, reflect on times past and prepare myself for the day ahead. I read, I pray, and I sometimes cry. I try to plan my day out but know that those plans can change quicker than Garfield the cat can down a plate of lasagna.

Many of you live with a stable condition of multiple sclerosis. Your days are fairly predictable and you are able to plan ahead easily. You know what to expect and how to adjust to the changes that happen throughout the day. Then there are others, much like myself, who have such unpredictable days, you can’t plan well because MS changes too drastically from one moment to the next. Even in your planning, your plans often fail.

MS is a disease of change. I think we can all agree to that. Some deal with smaller and easier to manage changes, but it’s all still change.

It would be wonderful to know what a day will be like: to plan and be able to keep those plans, to go to parties without leaving early, to spend time with friends without falling asleep on them, to spring clean the house without regretting it later, or even to wash and detail the car without dropping the wash rag every few minutes.

Even though I have trouble doing some of the simplest of things in life, I try to do them anyway…and that’s what counts. I try to do as much as I can when I can and leave the rest to tomorrow.

If you can’t adapt to change, you will find your days hard to get through. For some, it’s not easy learning to go with the flow…to ride down the river of life rather than fighting with it.

It’s okay to end your day differently than you expected, leaving things still to be done. Don’t get frustrated because your house needs to be vacuumed and you don’t have the energy to do it at the moment. I don’t know of anyone with an un-vacuumed house that has stopped the world from spinning causing it to fall off its axis thus ending civilization as we know it. Your day will go on and the vacuuming can wait for another day.

Choose the important things in life to be your focus rather than the things of little importance. I’ve learned that many of the things that I thought were important really weren’t. Use your time wisely and know that YOU are what’s important, not what you can or cannot do.

You are valued, treasured and needed. So today, step into the changing room, put on your MS superhero cape and step out into the world. You got this!!!

I am not Multiple Sclerosis

I can’t seem to go through a week without someone voicing their opinion as to how I am to rid my body of Multiple Sclerosis. Some have suggested that I don’t even have MS at all; that it’s actually Lyme Disease or a deficiency of B12 or Vitamin D and that I just haven’t been properly diagnosed. All of those answers come from a place of a lack of information and too much Google.

Anyone can be tested for Lyme disease, B12 deficiency or low Vitamin D since those are simple tests to perform. I understand that some people in the world have been improperly diagnosed because a doctor rushed through the process and didn’t look at the tests properly, but most of us living with MS are real and not a misdiagnosed statistic.

The difficult thing with diagnosing Multiple Sclerosis is that there is not one test to complete in order to prove you have it. It takes multiple tests to rule out other diseases and even then the signs have to be progressed enough to properly point to MS. The further the progression, the easier the diagnosis.

Mine was and has been rapid progressing so it was easy to determine that I have MS. Within just a few weeks from onset I was diagnosed. Some people are left in limbo for years as the doctors work to rule out other things that mimic MS before being able to make a final diagnosis.

I know that puts a person’s life in a place of uncertainty and at times causes great stress, but if the doctor said it was MS without really knowing for sure, it could be very bad for the patient. MS treatments could cause great harm to someone who does not actually have MS. That’s why the doctor needs to be certain.

A good Neurologist knows what to look for, so if you are stuck in limbo land, find a Neurologist to get tests done and if needed, get a second (or third) opinion. And be thankful if the problems haven’t progressed far enough to truly detect or if it is determined to not be MS. Those of us living with progressive MS wish we were so lucky.

I also get messages from people informing me of how I can be cured. It’s bad enough to be told I’ve been misdiagnosed, but to be told I could easily be disease free “if I only _______” causes even greater stress. Just because someone was supposedly healed of MS by going to a prayer meeting, taking a certain set of vitamins and supplements, undergoing bee sting therapy, or eating a specific diet doesn’t mean it will do the same for me. We are all individuals with unique DNA and cellular makeup.

There are different forms of MS just as there are different people living with it. A benign case of MS is the best kind to ever be diagnosed with. It will cause symptoms and then disappear for years, and sometimes for life, to never reappear again. That’s the kind we all wish we had.

But regardless of which form of MS you are living with, the question that really matters is can you go through the hard times and still find something of purpose to live for? Can you face tragedy with the courage of a lion even if you do it trembling? Can you see the good in the progression of a terrible disease? Can you tune out all the opinions and voices out there trying to tell you how to live your life and just be yourself?

Don’t ever let someone’s opinion of you affect who you are, and don’t let MS define you either. You know who you are more than anybody else on the planet. You are the one stepping out of bed each morning and forging ahead in the struggle. You are not MS. You are oh, so much more.

Hold your head up and go through your day with confidence knowing that you are amazing, beautiful and on a journey that has the potential to inspire others as they watch your quivering courage. You have what it takes to get through the days and weeks ahead. You are strong enough. You are brave enough. You are tough enough.

Be yourself, however you are!

Things never seem to go how I want them to

Have you ever needed to talk to someone yet you were scared half out of your wits to do it because deep down you knew it was not going to go well? To prepare yourself, you planned out what you were going to say. You chose your words wisely and sounded so eloquent in your head. You even planned out their response. Everything seemed perfect.

When the time came, you sat down with them only to realize that things just weren’t going as planned. They didn’t follow the script you laid out in your head. We’ve all had those moments. In most cases we can look back on those times and smile because, in the end, things worked out just not the way we thought they would.

Life has a way of doing that. It doesn’t go as we plan no matter how hard we try to make it. And sometimes we try really hard.

Before multiple sclerosis, I had my life all planned out. My career was set. My goals were laid out. I was going places and doing things. Then MS came along and changed everything up.

I think about it kind of like this…

There’s a comfort knowing that I can park my car in a certain spot every day; that if I open the top drawer in my bathroom I will find the toothpaste neatly tucked away; that when I go to the grocery store the tomatoes are to the right and the napkins are to the left.

But what would happen if I pulled into my driveway and couldn’t get into the garage because the garage door wouldn’t open; or I opened the drawer in the bathroom and the toothpaste exploded splattering all over my new dress; or if the grocery store decided to move everything around and change the entire floor plan?

What would happen? Frustrations would be high and schedules would get delayed. Now if those things were to happen all at once and then change every day into the future, well that’s a life with MS and not something you ever get used to.

MS is a disease of change and that much unexpected change can be hard.

When things don’t happen the way you think they should, don’t let that ruin your day. When change is the only things constant in your life, don’t allow frustration to rule the day.

MS has this way of changing life up on you without warning. Because of that, it’s important to sort through everything going on and choose to focus on the things that really matter in life.

Focus on family, friends, your faith, things that give you peace and happiness, and leave behind everything else that really, in the long run, doesn’t matter. Live in the moment. This way, when change comes (because we all know it will), you will be able to move right through it and keep going.

Multiple Sclerosis can be a lonely disease

I don’t think the world will ever understand that we don’t need their unfounded, unproven, misinformed opinions or their self-help miracle cures, mineral water and diet plans. We simply want to know that they care. Yes, it really is that simple. A kind word, a smile, a helping hand…you’d be amazed at just how much they actually help get us through the difficult times.

We want to stop being looked at as if we are a green martian when we park in a disabled parking spot at the store because we look too young and healthy to need it. We want people to be considerate when we struggle opening a door they so conveniently rushed through only seconds before. We want a chance to rest in the afternoon without being thought of as lazy. We want to be invited out with everyone else for lunch or an evening of fun even if we have to turn down the invitation later.

Multiple sclerosis can be a lonely disease. It can isolate you especially when your mobility decreases giving you fewer options for socializing and interacting with the world around you. The internet helps to bring people into your world but online avatars, screen names and hashtags can only do so much.

When you find yourself having a down day filled with loneliness, tears and a loss of hope that anything will ever get better, don’t lose heart. You are truly not alone. My struggle may be different than yours, but I understand the depths of despair that happen because of a disease that has taken over and altered my world in ways I never thought possible.

All those hurtful comments people make and those misunderstood words of advice from well meaning friends, if they are not helpful toss them to the side. Don’t hold on to anything that pulls you down whether that be a thought, words or even a person.

I have found that if I allow someone to speak their opinion, it leaves them happy to have contributed to my life…even if their advice is so full of holes that it wouldn’t hold a teaspoon of water, but once they say what they have to say, I let it go. I have to or I would go bonkers.

Let go of all the junk you have been holding on to—those things that weigh you down and that people have spoken about you or to you that do no good. They’re not worth carrying around. The only thing you need to be carrying is your head…carried high.

Don’t let your struggle steal your happiness

I’m not going to lie and tell you life is wonderful at the moment or pretend to have all the answers. The truth is, life is hard and for those of us living with a chronic illness it seems harder than it does for others because our struggle is never ending and always changing.

Each morning I wake up exhausted but thankful that a new day is here filled with its countless possibilities. Throughout the day I face challenges that at times can become overwhelming, painful, and sometimes more difficult than I had ever imagined. Then when I go to bed at night, I pause to reflect on my day and without fail realize that I made it through another day with multiple sclerosis, maybe bruised and a bit wounded, but I still made it through and a new day is coming.

But what will that new day hold? Will it be a good day? Will it be terrible? Will I cry? Will I laugh? I just don’t know. All I know is a new day is coming.

I know life can be hard, but through the struggle I want you to remember this one thing…

When things get bad, no matter how hard they become, know that even on your darkest, cloudiest day, the sun is still shining from behind the clouds. It hasn’t fallen out of the sky. It hasn’t run away for been turned off. It’s still there and although the storm clouds can become daunting and terrifying as they hide the sun from view, they will eventually shift and you find those beautiful rays of light peeking out once again.

Don’t let your struggle steal your happiness. Stay strong and find new ways to persevere. Remember those moments when you pushed through the pain and managed to wade through the darkness? Those are your strongest days. You would have never experienced such strength if you hadn’t been pushed so hard to find a way to survive.

And that’s what you are…a survivor!

You are not alone in this journey with MS. Brighter days will come. I can guarantee you that.

Oh, look…I think I just saw a little bit of sunlight peeking through the clouds. It’s a new day filled with new possibilities. You are going to make it!

If you want to find out who your real friends are, get diagnosed with a chronic illness

The world is full of selfish people. Society has become so consumed in their own day-to-day search of notoriety and importance that they have ignored the countless hurting people all around them.

People with disabilities go unnoticed and many times pushed aside as bothersome. Ears have been closed to their cries and eyes have been shut to their pain. Many are too busy trying to get their 15 minutes of fame from social media to be able to take a break and truly care.

I have always told people, “If you want to find out who your real friends are, get diagnosed with a chronic illness and see who sticks around.” It’s sad to say, but oh so true. Living with a chronic illness brings with it this uncanny ability to weed people out of our lives. It’s sad and shouldn’t be, but it happens to all of us.

Invitations to parties dwindle, offers to help dry up and loneliness settles in. We find ourselves struggling to find purpose in the midst of a life of pain. It’s not easy waking up each day to a fight. Tears come way too often and hopelessness tries its best to take us down.

We need to use our experience to help comfort others and offer support to those going through that same thing. Don’t walk around with a cocky attitude telling others to just get over it and suck it up while spouting out that while you have MS, MS doesn’t have you. Instead, extend a hand to wipe away the tears of those whose hearts are breaking and whose lives are falling apart.

Will you do something to reach out to someone who feels all alone? It could be because of a new MS diagnosis or simply a storm that is overwhelming them at the moment. Will you be different than society and walk in when everyone else walks out?

People are hurting everywhere and we can do our part to help even if it’s through something as simple as a kind word, a smile or an email saying that you care.

Share the hope you have with others. It really does matter. And besides, you may need someone to do the same for you tomorrow.

My body is too weak and I think I’m too stubborn

Yesterday I pushed my body further than I should have. I didn’t do anything extraordinarily difficult or exhausting, it’s just that my body has become more limited causing me to get creative in the way I do things which is not always a good thing. I think yesterday’s creative had a bit too much stubborn mixed in with it.

Everything was going great. I took my morning shower, had my coffee, read a bit online then went out to do a little work in the yard. I was pulling some weeds out of the garden and found myself fighting with a stubborn vine I wanted out of there. It wasn’t moving but I thought I wasn’t pulling hard enough on it since my hands are weak and I couldn’t grab it properly.

I wrapped the vine around one of my hands and pulled on my arm to try and free the vine from the dirt. By this time I was leaning over the right side of my wheelchair as I pulled. It was then that I heard my body crack. I don’t have much feeling in my upper torso but I knew that sound when I heard it. I cracked a few ribs and can feel the aftereffects quite well now…ouch!

Later, I realized I was leaning on the arm of the chair and must have been putting too much pressure on my ribs with the pulling motion on the vine causing them to crack. I knew at the time I was in an awkward position and shouldn’t be leaning over like I was but I didn’t think I would break my body like I did.

I know I need to be more careful when I’m out doing things by myself, but somehow my stubbornness wins those arguments and I end up paying for it later. Why do I have to be so stubborn?

The good thing is my ribs aren’t broken. The bad thing is there’s nothing to do about it other than wait for them to heal. Breathing hurts, moving hurts and even sitting up hurts right now. It would be wonderful if the numbness in my torso also numbed the pain.

Later in the day, I went to pour of cup of coffee knowing that I’m even more limited now than before because everything I do seems to be causing my ribs to ache. I tried to be careful but my hand slipped while pouring and the entire pot of hot coffee spilled all over my right hand, the counter and the floor. I immediately put my hand under cold running water and grabbed some ice but can definitely see the blisters now.

If that wasn’t enough, somehow during this whole fiasco my suprapubic catheter (that’s the tube coming out of my belly attached to a urine bag) got a kink in it and I ended up having an accident all over myself.

Bad thing about it all was that my ribs were so sore that it took much longer than usual to clean up. It wasn’t something I could simply leave for the magic cleaning fairies to clean up for me. I think they are away on vacation right now anyway. Eventually I got everything cleaned up, took a second shower and climbed into bed calling it a day.

Ugh, it’s going to be a down day for me today.

I’m actually laid up in the bed right now doing absolutely nothing. No laundry. No trips to the store. No shower. Just me, my pillows and my TV remote…and I’m okay with that. I’ve learned to enjoy the journey even when I end up in places I don’t want to be.

I’m not sure I have learned my lesson of not pushing myself too much. I have a feeling I will end up in more predicaments as time goes by, but I will try to limit them to when other people are around to help me out just in case my bright ideas fail. And I’ll laugh about it all later. That’s a guarantee.