A few of my favorite things

I think I’ve turned into Linus of Charlie Brown. Well, maybe not really, but I have noticed that I have a favorite blanket and I rest better when I have it with me. We have a special bond…my blanket and I.

Its fuzzy and warm, but not too warm to cause me discomfort. It goes with me to the hospital when I have to stay overnight, is a comfort when I have infusions, protects me from the monsters in the night and lets me cry when I need to let out the emotions that are building up inside me.

What is it about things like blankets that bring such comfort? I guess it’s the same with a favorite shirt you wear when you’re watching your sports team play, a piece of jewelry you put on every time you go out, or a mug you gravitate to when pouring a cup of coffee (mine is a red mug a friend gave me). We get attached to things without even realizing we are doing it…even as adults. Things that bring us comfort and help to calm our days.

Everyone has an attachment to something…computers, sports teams, gum, even TV. We find a comfort when they are a part of our lives. Living with a chronic illness is so full of change, chaos, pain and uncertainties that I think we get attached even more to things that help us through the difficult days, and that’s okay.

I actually have a few things that bring me comfort besides my blanket, things that bring me joy on those difficult days: books, chocolate, the laugh of a child, a clean house, the smell of cookies baking, sitting by a fire, being outside in the coolness of the morning, coffee at sunrise, opening a surprise gift, the smell of fresh cut grass, the perfect shoes, a great joke, a night time sky full of stars, people watching, roasting marshmallows, completing a puzzle, listening to a friend tell a story…these are a few of my favorite things.

When difficulties come your way, what brings you comfort? What do you surround yourself with to bring you smiles? What are a few of your favorite things?

Life can get hard with Multiple Sclerosis

I heard time tick by this morning: 1 AM, 2 AM, 3 AM, 4 AM. I tried so hard to sleep. All attempts to get Mr. Sandman to pay me a visit failed even though I was exhausted. If there were any sheep to count I would have tried counting them, but all the sheep must have been out to pasture.

There comes a point during those sleepless moments when tossing and turning becomes so miserable that I have to get up to do something, even if that something is staring at the walls in the living room rather than the ones in the bedroom. At least it’s something different.

I moved myself to the couch in the living room where I sat listening to the crickets, frogs and birds. All of nature seemed to be awake with me. Maybe I should be counting chirps and croaks at this hour instead of trying to find fence jumping sheep.

As I sat on the couch I began to think about the past week. About how miserable, exhausted, lonely, limited and painful life can become. It seems no matter how hard I try to hold it together, my body keeps falling apart. That thought alone is enough to overwhelm a person. Maybe you have been there before too.

I’ve noticed that people are great at throwing out their cliché quotes of not giving up and about how much worse things could be at the most inappropriate times. I grow tired of the insensitive one-liners and sugar coated quips. Life is not a cliché and can’t be solved by one either.

I can be positive and still hurt, have fears, worry about tomorrow, and even cry, but the reality of multiple sclerosis doesn’t have to control my thoughts like it controls my body. MS may dictate everything else about my day, but I refuse to give it control of my thoughts.

Don’t let the things you can’t change be the focus of your day. Yes, MS is a terrible disease. Yes, you have to deal with some pretty terrible things in life because of it, but don’t let those things turn you into an upside-down, twisted-up, unripe, sour-faced lemon. You can still enjoy life no matter what you are facing or how hard life becomes.

Instead of spending your day grumbling about how lemon juice got squirted in your eye, take those lemons that have been handed to you – okay, maybe thrown at you – and turn them into the most incredible pitcher of lemonade ever. Put Tropicana and Fresh Farms to shame.

And, if you can’t make lemonade, why not cut them up and offer them to some of the insensitive people to suck on? It will give you a laugh to watch their faces as they turn inside out. Seeing their sour pucker could possibly cause you to lose your frown.

Today, choose to think about something that makes you smile rather than focusing on the pain. Choose to be the one in charge of your thoughts. Choose to live in spite of MS.

Think

Are you thinking what I’m thinking?

I have been known to have some fairly outlandish random wild thoughts. For some reason my thoughts have a tendency to go bonkers from time to time. I think they just get bored and have nothing better to do.

There have been times in my life when the “whatifs” have crept into my head. I’m not a fan of theirs so when I catch them sneaking up, I shut the door as quick as I can. I admit I’ve thought things like “What if I end up confined to a bed?” or “What if I’m no longer able to take care of myself?”

Those kinds of thoughts are normal and can be quite healthy to sort through, but they are not fact so you can’t give them too much space. Don’t spend hours and days entertaining those little buggers.

Shel Silverstein is one of my favorite poets. He has written some amazingly quirky and unique children’s books. I still pull them out to read from time to time. He wrote a poem called “Whatif” that I think you will enjoy.

Whatif

Last night, while I lay thinking here,
Some Whatifs crawled inside my ear
And pranced and partied all night long
And sang their same old Whatif song:
Whatif I’m dumb in school?
Whatif they’ve closed the swimming pol?
Whatif I get beat up?
Whatif there’s poison in my cup?
Whatif I start to cry?
Whatif I get sick and die?
Whatif I flunk that test?
Whatif green hair grows on my chest?
Whatif nobody likes me?
Whatif a bolt of lightning strikes me?
Whatif I don’t grow talle?
Whatif my head starts getting smaller?
Whatif the fish won’t bite?
Whatif the wind tears up my kite?
Whatif they start a war?
Whatif my parents get divorced?
Whatif the bus is late?
Whatif my teeth don’t grow in straight?
Whatif I tear my pants?
Whatif I never learn to dance?
Everything seems swell, and then
The nighttime Whatifs strike again!

Don’t let the whatifs take up any more of your day. You will have the strength needed to get through tomorrow when tomorrow gets here. Don’t look ahead in fear, instead look ahead with a determination knowing that no matter what happens, you are strong enough, brave enough and courageous enough to face whatever may come…even if you do it with knocking knees and trembling hands.

Kick those whatifs out of your head and fill that space with thoughts of thankfulness instead. You really do have a lot to be thankful for. Just look at how much you have already overcome in life.

Multiple Sclerosis limits me more than I would like

I seriously think my stubbornness is the only thing that keeps me going amid all the craziness that happens in my life. I’m almost sure if that wasn’t a part of my personality I would have given up a long time ago.

This past weekend I cracked a rib trying to clear a section in my back yard that has some small dead surface tree roots that need to be pulled up, but the roots were just as stubborn as me. I leaned over in my chair, grabbed a surface root and started pulling. To keep from falling out of my chair I was leaning a bit sideways over the chairs arm. If I don’t do it that way, trust me, I will fall flat on my face. I don’t have great trunk control.

As I was pulling I heard a crack. Not from the root but from my rib as it was stressed from the pressure I was putting it through against the arm. Apparently I have better strength than I thought. It hurt like crazy too. It took me a minute to be able to straighten myself up and catch my breath. Every breath hurt. Every movement hurt.

The limits multiple sclerosis has placed on my life are more than I would like to have to deal with but now they are compounded by something completely non-MS related. I’m pretty good at added things into the mix that could have been prevented.

This past summer I broke two toes in a failed wheelchair transfer, before that I burned myself by pouring an entire hot pot of coffee on my lap, and before that I sliced my hand open trying to cut my own vegetables. By now you’d think I would be a bit more aware of my limitations.

That’s why I say my stubbornness is what keeps me going. I am not a quitter. It’s hard for me to not at least give something a try though. I’m perfectly fine letting someone else help me out, I just want to give things a try myself first. It makes me feel a bit more human and useful.

I hope I never give up the willingness to try things on my own. I doubt this will be my last accident. I just need to be more cautious and plan things out a little more in the future. I’m so glad my friends and family understand.

letters

My Multiple Sclerosis jumbled up brain

Some days I really think my brain needs oiling, or maybe it needs repairing. Oh, who am I kidding…I just need a new one! You want to know why I forget appointments, people’s names, a movie I have already watch…twice, and what was said a few minutes ago? I think it’s due to the fact that my brain looks like a block of Swiss cheese on my MRI scans with holes scattered all over the place. 

If you were to pour water onto my brain, I’m positive it would leak like a sieve all over the place. I think many of my thoughts have fallen into those holes.

I imagine words bouncing around in my brain, sliding from hole to hole and hitting road blocks in hopes of finding a way of escape. It’s kind of like they are stuck in a perpetual reality game of Chutes and Ladders.

What happens to the thoughts that don’t find a place to call home? Do they just keep rattling around in there all day long? It’s such a weird feeling to know the words I’m trying to say but can’t seem to connect those thoughts with my tongue. I know I frustrate people from time to time with my long pauses, lack of complex vocabulary and made up words. I frustrate myself too.

I’m thankful for the people who are patient with me and allow me the space I need to piece things together even when I get things all mixed up. The phrase “collecting my thoughts” never meant much to me until multiple sclerosis came along. Now I truly know what it’s like to sift through words, thoughts and ideas as I attempt to find something that makes sense.

But that’s my world now…a jumbled up, 3-dimensional word search game. The bad thing about it is that someone keeps switching the game board and jumbling up all the words. Just when I think I have things solved, BAM…there’s a new arrangement of letters and words to sort through.

So, if you are looking for me today, I’ll be sifting through a sea of letters and words in my brain searching for…what was it again? Pancakes? Trashcans? Envelopes? Ugh…I think I need a nap.

We need to redefine strength

You never realize how strong you are until you are faced with a challenge that tests your strength. Many people see being strong as hiding your emotions, censoring how you feel and keeping it together at all times…basically to lie to yourself and to others that you even feel or have any problems in your life.

Why do so many people believe that tears are a sign of weakness? How many times have you heard “suck it up” when you were hurting so badly that you didn’t even have any breath to suck up in the first place? Those kinds of words drain any remaining life out of a person leaving them hopeless and wounded. Life isn’t fair…absolutely, but that doesn’t mean pain should be swept under the rug and invalidated.

Pain is real. It stings. It hurts.

The truth is, there are times when life knocks the breath out of you without warning and leaves you down on the floor seeing stars. When that happens, you don’t need another slap in the face or kick in the gut by an insensitive person throwing out cliches and half-baked solutions.

We need to redefine strength.

Being strong isn’t denying your emotions…it’s embracing them. It’s saying yes, I’m hurting, yes multiple sclerosis is kicking my butt, yes I’m tired, then allowing yourself time to face those challenges head on. It’s crying when you need to and screaming if you have to. You don’t even have to succeed in order to be strong. Trying your best and failing shows greater strength than doing the victory dance at the finish line. You have to be honest with yourself and acknowledge your feelings. You can’t hold back what makes you, you!

The important thing is to not allow those feelings to control you. Give yourself thirty minutes to cry that gut wrenching cry you need to get out, then catch your breath, blow you nose, dry your eyes and hold your head high.

Never give up the fight to survive no matter how weak, hopeless, or completely powerless you feel. You are stronger than you give yourself credit for. Remember, tears aren’t weakness, they are simply parts of you leaking out to make room for those amazing muscles you are developing.

You choose

Everything you do in life begins with a choice. Even a choice of not choosing is a choice. That’s not an easy thing to grasp. Do you realize you will choose how to live today? You will choose everything down to if you end the day in tears or with a smile. You will choose how you live tomorrow too, and the next day and the next. That can be a sobering thought. 

So many times we tell people “I have to do this” and “I have to do that.” But do we really? I believe we don’t “have to” do anything…we CHOOSE to do them. We have been conditioned to make certain choices without even thinking about them and some we make because we don’t want the potential repercussions that can happen if we don’t.

Think about it…

You don’t have to get out of bed…you choose to.
You don’t have to eat what’s in front of you…you choose to.
You don’t have to do what someones asks…you choose to.
You don’t have to take your meds…you choose to.
You don’t have to brush your teeth…you choose to.
You don’t have to smile…you choose to.

The list could go on and on with each thing you do today. Your choices today don’t just impact you and the very moment you are in either. They echo throughout life and create memories. They leave little footprints and cause ripples that affect others around you. I know some of you don’t believe me. You are reading this thinking, “That’s not true. What about the things I can’t choose? What about me having MS? I didn’t choose that.”

And you’re right. You didn’t choose MS, but you do get to choose how you respond to it. You choose if you will be angry, in denial, frustrated, or in fear. You choose if you will be determined or if you will give up. You choose.

Make choices today that give you a better tomorrow. No matter what you are facing, whether you are hurting, in debt, unemployed, unable to walk, in pain, weak…you choose how much MS will take from you.

Make the choice to live. Choose to be a better person today than you were yesterday. Choose to smile, laugh, appreciate others, help someone in need, love, care. It’s a new day. You choose.

Lately I’ve become more home bound than any other time in my multiple sclerosis journey

Lately I’ve become more home bound than any other time in my multiple sclerosis journey. Sometimes I welcome the solitude and enjoy my alone time, but more and more it seems to come accompanied with depression, feelings of worthlessness, and tears.

Last week I was invited to a dinner scheduled for last night. It was something I had been looking forward to getting out of the house to be a part of. I had even laid out the clothes I was going to wear, but at the last minute I had to cancel because MS just wasn’t cooperating. Between vertigo, blurred vision, tremors and weakness, I just wouldn’t have made a very good dinner guest.

I crawled into bed after letting the person know that I couldn’t come and broke down into tears. The sobbing, snorting kind of tears. I felt so alone, so useless. No one tells you when you get diagnosed with MS that life has the possibility of changing like that. But you know, I have a feeling that even if they had told me, I probably wouldn’t have believed them anyway. I always thought I was going to be the one to beat the odds.

So what do you do when life catches up with you? What do you do when MS limits you? What do you do when tears are easier to come by than smiles?

The emotional pain that accompanies these kinds of times are hardly ever understood by others, but it’s important to not let them weigh you down. Talk to those in your life who are part of your support system whether it be a family member, doctor, friend or therapist. You can’t keep everything bottled up. It really is okay to talk about what’s going on. You’re not being selfish, a burden or attention seeking when you do.

Today, I’m up early, my emotions are much calmer and I’m ready to face the challenges before me. Sure my hand is still a bit shaky and I had a hard time transferring from my bed to my chair, but it’s a new day filled with countless possibilities. I’m dressed, the weather is starting to cool down a bit which is always welcomed, and I already found something to smile about as I watch some wild turkeys in my back yard playing tag.

Don’t lose hope! Sometimes that is the only thing holding me together.

Multiple sclerosis and me are not a good fit

Some thing go together…bees and honey, milk and cookies, pen and ink. Then there are some things that just don’t fit. Things like peanut butter and mustard or swimming and lightning…those things don’t fit so well together. How about music and ear plugs or driving and texting? Nope, they don’t fit either. You know what else don’t pair so well, Multiple Sclerosis and me. We are just not a good fit. It’s a constant battle of what I want to do and what MS will allow me to do.

I still find myself overdoing it and pushing myself beyond what I should be doing. Regrettably, every time I do that I end up feeling the effects of it later. You would think I’d know not to push so hard by now. Sometimes I do it because I just want to fit in with everyone else. Other times it’s because I forget my limits. But most of the time it’s just because things need to get done and I’m the only one around to do them.

It’s important to know your limits and to treat your body with care. Our bodies need more care than most and we have to be sure to not overdo it. We all get busy, we all have moment when we push too hard, we all forget just how much our bodies have changed because of MS, and we all need to recognize when we need to take a break.

A vacation from MS would be an amazing thing to have, but since that’s not going to happen any time soon, give yourself permission to slow down and rest. Maybe I can’t rid my day of MS, but I can purposely give myself a break and do something just for me.

I have decided this weekend that I’m going to pamper myself and not lift a finger to do anything. No cleaning up messes, no laundry, no work of any kind. Just me time and coffee. I’m going to do it even if that means turning my phone off, shutting down my computer and locking the door. I’m choosing to step away from the chaos and just rest. I’m choosing myself over MS. We all need to do that from time to time.

sleepy

Sleep through the night? Are you serious?

“So you say I can feel rested if I just go to bed early and get 8 hours of sleep each night? Really?”

That’s my response to people who ask me why I’m always so tired even after getting a full night of rest. You see, they don’t seem to understand that our full night of rest is more like a trip to a baseball game on a sold-out night.

It goes something like this…

You find your seat and settle in for the game with your team shirt on, a foam finger in one hand and a bag of peanuts in the other. “Play ball”…the game has begun, but since you are in the third seat on your row, everyone has to step over you to get to their seat. Your toes get stepped on by the first person coming by, you get smacked in the head with the next lady’s purse, and elbowed by the person after her.

You endure constant commotion and movement as people carry drinks and food up and down the row. One person even spills part of their drink on you. Then, just as the game is getting good, the person next to you starts talking so loud that you can’t even hear your own thoughts anymore.

You are stuck listening to everything about their job and the problems they are having with their boss…things you didn’t need to know, but now do…and in the process, you miss the epic play of the night. You were there the night a world record was set, but have to watch the replay to find out what really happened. You simply wanted to enjoy the game but it seems like there’s more going on in the stands than on the field.

That about sums up a night of sleep for me with MS: pain, dizziness, tossing and turning, muscle spasms, and an overactive brain that won’t shut up.  A night of sleep…I wish!

When someone tries to rationalize or downplay your fatigue, it can hurt. Many times it seems like the more you try to explain how tired your tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes you just wish you could give them a taste of what your fatigue really feels like.

If only they could understand that your muscles are worn out, your brain can’t process thoughts clearly, your words keep getting mixed up when you talk, your head is spinning even while sitting still and the numbness throughout your body has intensified beyond explanation.

Most of the time I try so hard to press through the worst of those moments, but over time I have found that it’s important to give myself a break. Listen to my body…slow down and rest. Naps are my friend now. They are good for too.

I know the world is buzzing by at hyper speed and it tries to force you to keep up with the pace it sets, but MS has a new pace for you. Besides, most of the buzzing about that the world wants you to do isn’t really important anyway. Hold onto the things that really matter and let the rest go. Simplify your life. You’ll be glad you did. Your fatigue may never go away, but you will have less collapsing kind of moments…and for that you will be grateful.