Don’t ever apologize because you are hurting

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Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing without a “woe is me” attitude and their response was just get over it? I’ve always thought that to be a strange response. Get over what exactly? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute-by-minute basis? “Oh, today I’m going to ignore the fact that my legs don’t work, get over it and walk across the room.” Really? And that’s supposed to make multiple sclerosis go away…ignoring it and just getting over it? Yeah… No, that doesn’t work.

Don’t ever apologize because you are hurting or needing help. It’s like being sorry for being real. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and invisible to the onlooker.

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

But unlike a broken arm, a chronic illness is ongoing. It doesn’t simply go away as time passes. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

I promise you that no matter how hard life is right now, you are not “too much” or someone that is weighing other people down. As I’ve said many times before, remember that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden whenever they can. Let the others go.

Above all, remember that you are loved. I know it doesn’t feel like that right now, but it’s true. An MS life can be remarkably hard. We’re not invincible. What one person can handle can be too much for someone else. It’s not about how strong or weak you are, you’re just a person trying to make your way through the craziness of an MS life like many others. Give yourself some credit for pushing on despite how intense things are right now. You got this!

With multiple sclerosis you can’t control your body

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When I was diagnosed with multiple sclerosis, I saw all the good happening in my life disappear as if a sinkhole opened up around me. Many of the things that I had planned was just washed away. As the days passed I saw my lifelong career finished, friendships lost, finances depleted, and any motivation I had to try and further my life began fading away.

It was replaced with an overwhelming amount of depression along with hopelessness, dread, and fear as my body stopped functioning due to loss of mobility, body tremors, numbness, urinary incontinence, pain, brain fog, relentless fatigue, vision difficulties, and speech problems. Whew, that’s more than I ever expected and it happens to change moment by moment. No day or hour is the same and new problems kept arising.

I didn’t see anything good happening in my life. As the days went by and my progression worsened, I was convinced my life was over.  Forget about that long list of problems and issues I now face, if you’re like me, if you don’t forget the symptoms you are experiencing you will forget how to pronounce them or what word to actually use to describe them.

But I have to say that regardless of MS, I found I can accomplish anything I set I mind to. I end up laughing at myself for my crazy brain fog moments and try my best to take each moment to pause and breathe.

I found that with hard work and determination I can do anything. I may do it differently than in the past but who cares what I look like or how it’s done. I sure don’t. MS has rid me of having to appear put together. I drool, fall down, drop things, and forget anything someone tells me, but all I can say is oh well and just keep going.

Like, I can deal with my blurred vision if I look through just my right eye and don’t try too hard to focus when in motion. That wouldn’t end well. Between blurred vision and loss of color clarity in one eye, every day is an adventure.

I can walk with parallel bars if I hold onto them even it’s only for 5 steps, but hey, it’s 5 steps… yeah! If only my world was surrounded by them and followed me with a chair to sit in every few steps I take, I would be able to go anywhere on foot. But I’m proud of my ability to function in my powerchair called an iLevel which gives me the ability to reach things that would normally be out of my reach affording me the opportunity to set up my kitchen and bathroom to use the upper cabinets without the hinderances I had before.

The numbness in my body has become something that doesn’t subside. Although it’s there constantly, it’s something I have be aware of due to possible injuries I may get with sharp objects and extreme temperatures. I have had my fair share of burning myself without realizing I’m touching something hot, so I deal with if mostly by not giving in to the frustrations that happen when I get a bit absent minded. I have had broken bones, burnt hands and deeply cut fingers all because of it, but they are my battle scars and I wear them proudly.

Now the tremors are one problem that is a bit more difficult to deal with. I had an issue just last night when I was heating up a bowl of noodles and in the process of placing the bowl on my lap, my right hand had a crazy spastic moment accompanied by tremors and the bowl went up and fell spilling everything on the floor as well as on me. Of course when those kinds of things happen I dread the clean up, but while cleaning up I just laugh at myself thinking, I knew that would happen… which of course I didn’t, but it has just become more possible than random and I again end up in laughter mixed with tears thinking “it could be worse”. Then I made a peanut butter sandwich.

When you are filled with anger and start questioning your existence. Wondering why MS happened in your life? Why you’re facing the challenges MS brings? I can tell you that you’re not a bad person. God doesn’t hate you. You are going to be okay. Really… you are.

With MS and all that it brings, you can live life to the fullest. Don’t dwell on the past. You can’t change anything that has happened to you and wishing that things were different doesn’t help anything. As you have probably noticed, with MS you can’t control anything including your body and what it will do next, but the lack of control forces you to look at what you do have and truly count your blessings.

The best thing of all, you can control your attitude. Having a positive attitude in a negative situation will strengthen you and give you the needed determination to go further than you thought. And do it with  gratitude. You can accomplish anything. I believe in you as we go forward (sideways) together.

What being brave feels like

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I know how hard it is to push through the murkiness and brain fog that surrounds you all because of multiple sclerosis. You don’t deserve the troubles it brings to your life. You didn’t cause it and you can’t seem to escape from its hold on you.

It’s almost like you are stuck in a pool of quicksand that feels more like concrete than murky water. At least with murky water you can move and keep you head above the water line. With concrete you just sink to the bottom like a rock.  I have had my fair share of bottom sinking moments. I have the bruises and broken bones to show for it.

At those moments all I know to do is cry. I don’t feel very brave when that happens. Do you know what makes me feel brave?

I feel brave when I stand up and don’t let people tell me who I am or am not.
I feel brave when I face the monster that has tried to destroy me even while shaking in my boots.
I feel brave when I hold someones hand so we can face this journey together.
I feel brave when I put on my socks without falling over.
I feel brave when I ask someone for help.
I feel brave when I tell someone to their face that I will not be treated in a certain way.
I feel brave when I stand my ground about the medications I will or won’t take.
I feel brave when I tell someone how much they mean to me.
I feel brave when I make it through a day with less battle scars than the day before.
I feel brave when I manage to get out of bed while my body is screaming at me to just go back to bed.
I feel brave when I use the toaster without jumping out of my skin when the toast pops up.
I feel brave when I know that MS can’t sink me.
I feel brave when I actually enjoy my alone time without feeling guilty.
I feel brave when I help someone else to be brave in the face of what they fear.

Keep fighting the good fight. Peace, love and lots of chocolate to you…

I’m ready for a new year

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It’s hard to believe that a new year is here. It’s a new year, a new day, I have a fresh cup of coffee… but same ole body. Hmm, that didn’t go as planned. I guess you can’t have everything you wish for. I tried wishing for a million dollars too but that didn’t work out for me either. I still have the same bills, house payments, piles of dirty laundry, and still have multiple sclerosis to battle.

We have all come through some crazy moments and stumbled through them into another year. Maybe things didn’t go as you wanted, but you made it. Now, that’s something to celebrate along with all the fireworks, champaign bottles and shouts of Happy New Year.

I can see a lot of good in the bad. Yes, there were some not-so-good days, some terrible days, and some downright terrifying ones… but if I truly look, I can see past those times and find the good. Days that made me smile instead of cry. 2024 can be filled with those kinds of days too. Be determined to find the good in the days, weeks and months ahead… even in the pain and the struggle.

Multiple sclerosis is not an easy disease to live with, but neither is the disease of negative thinking. Choose this coming year to live each day looking for the good. Even if there is only one tiny spec of good in a day, choose to find that one spec and hold onto it. It will make your year ahead greater than you ever imagined.

Some people have asked me if I have a resolution for the new year and the only answer I have is that I plan to be a better person than the person I was yesterday. That’s my plan for every day. I make many mistakes along the way in life. Some hurt me, some hurt others, and some have no consequences other than the fact that things could have been handled better.

There are some things I have learned about life along the way. The key is the keep learning. That is the key to life. That is what makes things the most enjoyable. And that is what helps us to progress and improve.

  1. Perfection doesn’t exist, stop looking for it.
  2. It’s not your job to make everyone happy, cut your losses and go.
  3. Choose to spend your time with people who lift you up.
  4. Kindness makes you a better person. Be kind — always.
  5. Only you are the person who can change your life.
  6. Don’t sweat the small stuff. 99.9% of the stuff in life is small.
  7. Living with MS is not a competition. Really, it’s not.
  8. Don’t spend too much time in negative environments. You can drown that way.
  9. People may never understand your pain, don’t hold it against them.
  10. You never have to deal with more than one moment at a time.
  11. Getting truly organized can vastly improve anyone’s life.
  12. Revenge is for the petty and irresponsible.
  13. If anything is worth splurging on, it’s a high-quality mattress. You’ll spend a third of your life using it.
  14. Most of what children learn from their parents isn’t taught on purpose.
  15. Problems, when they arise, are rarely as painful as the experience of fearing them.
  16. Life is a solo trip, but you’ll have lots of visitors. Some of them are long-term, most aren’t.
  17. Wishing things were different is a great way to torture yourself.
  18. The ability to be happy is nothing other than the ability to come to terms with how things change.