#MSWillNotDefeatMe


Over the last month, I have reconnected with people I haven’t seen in years (27 years for one)…. It should be a time for excitement as we reminisce about past adventures, unfortunately, it has been a struggle.  I’ve shared my diagnosis and the most devastating part is not being able to remember….

When they ask “What’s it like living with MS?” Uhm…there’s just not a simple answer.  To those who don’t see me every day, they don’t know the subtle changes taking place.  They figure all must be well since I am still walking.  I mean isn’t MS all about not being able to walk and constant pain?  The truth is there is so much more to it….

When I try to describe the occasional physical and daily mental difficulties I experience because of MS, it is often met with some interesting responses. They have stemmed from “eat healthier”, to “eat more potassium” for the spasms in my legs, to try those pills on TV to help with memory, to “take B12” for the exhaustion. When I explain, I do some of those things already but they simply don’t work, They look at me like I have 12 heads!   After all, it works for them so it should for me too.

Some people just don’t seem to understand that those of us living with MS aren’t like them. We have a damaged Central Nervous System and our immune system is in chaos causing our own body to attack us. Some of the damaged areas to our nerves have healed well over time but some haven’t and new damage appears all the time.

The exhaustion I experience isn’t always because I didn’t sleep well the night before or because we aren’t eating nutritionally. It’s a debilitating symptom which isn’t always remedied with natural herbs and better sleep. Those things can help, but it’s not a “fix”. Catch me between 1PM – 3PM and you might find me falling asleep mid-sentence.

The loss of memory is something i will have to live with FOREVER!  Some things come back – you know those random things – but maybe only a snapshot instead of the whole movie.  LOL.  I’m learning to be honest about it and thankfully most people understand.

A trip to the mall is exhausting!  Some days just making my way across the parking lot of the grocery store presents a challenge.  When I am with my mom I always say, I wish I could walk as fast as she does at 82!

Through it all, I have learned to look this disease of MS square in the eyes and say, “I am not defeated because of you and regardless of what happens in life I am thankful for each new day I am given.”  A friend said to me recently, “God has a plan for you through all of this, just remain faithful”.  My recovery and working the steps has helped tremendously with this process.  I am turning things over and waiting for God to tell me what to do!

We will never understand all the why’s in life. Why MS? Why now? Why me?

No matter what the storm is you are going through; face it and be determined to be thankful as you go through it. Yes, it is possible to be thankful even in the most horrible of circumstances, but it’s a choice; and you have it within you to make the choice. You can stand up (even if only on the inside) and say, “I refuse to be defeated by MS (or whatever storm you are experiencing).”

Strength isn’t measured by the amount of things I can do or by how big my muscles are, it’s determined by the attitude I have while going through the difficult times in life. You are doing it. You are making it. Square your shoulders back and hold your head up high today because you are STRONG even though your body is weak!

This is MS Awareness Month and his has been my mantra lately.  I’ve had more days then I can count where the reality of MS has hit me. From struggling to walk with an ache in my legs, to brain fog which never seems to end to not be able to process thoughts, words or sentences.  God has placed loving people in my life who help me through the struggles.  It is his plan and even though some days I can’t see the light at the end of the tunnel…. I will hold onto my faith.

Have a ThirtyOne-derful day!

How Bright is Your Light?

Have you ever noticed, you are happiest when you are helping others, or making a difference in your own unique way?

Let your light shine before others, that they may see your good deeds and glorify your Father in heaven. – Matthew 5:16

The last month, I have been struggling.  Struggling with changes in my MS.  Struggling in my business.  Struggling with life.  I have been pondering why this month, what makes this one different.  I feel like my light has been dimming.  Sounds weird, right? I don’t mean it is a morbid way, just not feeling like I am making a difference anymore in the lives of others. No, I’m not on a pity pot.  I’m simply trying to adjust to the changes MS is making in my life.  A reality which is sometimes tough to grasp.  Talking with my sponsor the other day, she said “your brain my think things are jumbled but the words actually come out clearly and concisely.”  Yup, I needed to hear those words because it is the exact reason I have been taking a backseat in things.  Ok, I squirreled so, let’s get back to how you can let your light shit….

No matter what your purpose in life is, there is an underlying mission.  It is all about living your life in a way people say to themselves, “There’s something different about her and I want to know how to have some of the peace, joy, and love in my own life.”

Here are five ways you can let your light shine:

1. Look for ways to be a blessing.

Letting your light shine means letting everything good within you come forth. There is so much negativity around us on a daily basis when good enters our environment, it brings light into the darkness. It is a refreshing burst of clean air. Be sensitive to the needs of others. Find ways to be a blessing—even simple ways such as being a courteous driver, thoughtful friend, and kind coworker.  Small random acts of kindness do make a difference.

2. Refuse to be judgmental.

One of the fastest ways to turn people off – in business or in your life is to judge them. A person can done wrong without condemning them for it.  Honestly, I have made mistakes during my addiction BUT I was glad people did not judge me.  They gave me chance.  Honestly, we have all done things we need to be forgiven for, so be merciful to others. Embrace and support those you want to judge when they are trying to do better.

3. Speak up for what is just.

Speak up for what is just—not right. Do you confuse the two of these?  I know I do!  Focus more on being just so those who cross your path are better off for having done so. At work, in your business or in a personal situation, when others are being cheated, disrespected, or done a disservice, let your light shine and speak up. You can do it in a direct, calm, straightforward, and nonjudgmental way.  Of course, the “old social worker/advocate” in me is sometimes far from calm.  LOL!

4. Let go of the desire to fit in.

Maybe this is part of why my light has dimmed this month….. I’m a proverbial people-pleaser.  As the MS effects more of my life, I struggle to find a place to fit in.  I never thought about how difficult it is for my light to shine when I feel like I need to fit in everywhere I go. Sometimes, people think I am odd just because I  am smiling and talking to everyone.  I need to focus more on being a symbol of truth and love on a daily basis instead of trying to fit in.  What about you?

5. Don’t hide your spiritual life.

This may be a hard one for some.  For me, I have learned my Higher Power is central to everything in my life.  When I pretend that is not the case, my light dims.  It is by his grace, I have survived the craziness of my life.  I am not saying you need a Bible on your desk or a preacher’s robe to share your faith with others. When the chance comes to tell people where your strength comes from in difficult times, or to acknowledge how your Higher Power has protected or blessed you, be honest. Your faith is a part of who you are. When you free yourself to be who you are, you also free others to be who they truly are.

My Challenge to you is to identify one way you will share your light this week. Then set out to be a symbol of love and light in the world…  Share with us…..

Have a ThirtyOne-derful day!

Brain Jumble

letters
The cloudy cold dreary weather causes people to struggle with changes in their mood, and pain in their joints.  For me, add to it how it wrecks havoc on my foggy brain.   There was a time when I think my body just needs some oiling (lots of supplements/vitamins), and could definitely need some repairing but on those cold and dreary days….…I think a new one is the only thing that will help!
At the age of 61, some would say it is normal to forget appointments, people’s names, a movie I already watched (maybe more than once) or even what was said a few minutes ago….. the reality is my brain as seen on my MRI scans is filled with holes scattered all over the place. Some are bigger than others but definitely more than just the few which come with aging.
I love this explanation from a fellow MS blogger “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.”   It is so true.  Combine that mess with missing memories and some days I feel like the movie “50 First Dates”.  Yup, I had to look up the name because I couldn’t remember it.  If you haven’t seen it, it is about a girl who doesn’t remember so each day is a new day.  An average day for me includes not remembering things BUT there are those crazy radon thoughts which find their way through the maze of detours.  It is those crazy random thoughts on a good day which make some think, I’m okay!
What happens to the thoughts and memories which don’t find a place to call home?  Do they just keep rattling around forever?  It’s such a weird feeling to know the words or the things I’m trying to remember are there somewhere…. stuck so they can’t seem to connect with my tongue.  Therapists wanted to call it selective memory or that I am repressing bad things.  What about the good memories?
I know I frustrate people from time to time with my long pauses, lack of complex vocabulary and not remembering things.  I frustrate myself.  I used to be able to multi-task, juggling lots of things and remember clearly important events (as well as random nonsense) in my life.  Most memories of my childhood seemed to be missing after my addiction so I adjusted or at least I thought I had.  I always said I probably burnt out more brain cells than I thought during my many years of using drugs.  Then along came the MS.   Only recently have they determined loss of memory can be a key factor in the diagnosis of MS so were the gaps in memory addiction or MS.  Guess we will never know…
I struggle to remember things when talking to my old HS classmates. I struggle to remember growing up.  I struggle to remember the birth of my daughter.  I struggle to remember the work and people I met doing social work for 20 plus years.  I struggle to remember my wedding.  I struggle to remember my accomplishments even looking at pictures or plaques seem like someone else.  I struggle with my business to remember prints, products, fellow consultants and even customers/hostess who have been with me for my almost 8 years in business.
I struggle to remember time frames so it may have been weeks/months since I talked to you but to me, it may be less than a week.  Some days I can’t remember anything at all, then some days I remember bits and pieces.  When people tell me things I have said or done, it seems so foreign to me. Like it was a different person – a person I can’t identify with now.  The memories I do have take on a different picture than those of the people around me – some things have fallen into the potholes of my brain still trying to find a way out.
I’m thankful for the people who are patient with me.  I thankful for the ones who give me the space and time I need to piece things together even when I get things all mixed up.  I’m learning to say “ I’m collecting my thoughts” which is so true some days.  I’m learning to be honest and say “I don’t remember” of course the blank stare I give when people talk is often a clue.  I truly know what it’s like to sift through words, thoughts and ideas as I attempt to make sense of things.
But that’s my world now…a jumbled up 3-dimensional word search game. The bad thing about it is someone keeps switching the game board and jumbling up all the words. I feel like they see I have made progress with my puzzle and then come along mixing up all of the pieces.  Just when I think I have things solved, BAM…there’s a new arrangement of letters, pieces and words to sort through.
Today’s blog was a rambling jumble of thoughts as I come to terms with living life with MS.  There are days I try to act like it isn’t there – things are normal (whatever that may be).  There are days when I am unable to move because my muscles don’t know what to do.  There are days when I actually do remember, and can function as if the MS is only a blip on the radar.  Most days, I’m just trying to sift through a sea of letters and words in my brain searching for…what was it again? Pancakes? Trashcans? Envelopes?
Have a ThirtyOne-derful day!

 

The Spoon Theory

As the holidays approach and the busiest season of the year for my business, I need to be reminded of this theory.  I’m one of those who run at 200% on good days and then collapse into exhaustion.  There are a lot of us who do this BUT for those with chronic diseases it takes on a whole new meaning.

I push on the weekends for events and home parties with a goal of taking is slow during the week.  Okay, so it doesn’t happen often.  The aches generally turn into not sleeping, exhaustion, tingling in my arms and legs along with the ever changing mood swings.   Then when scrolling through some things, I came across this post I did about a year ago and thought…”this is definitely a good one to reblog”..

The Spoon Theory written by Christine Miserandino was used to describe her battle with Lupus to a friend.  It is a great way to explain those silent diseases. You know, the ones where we don’t look sick.

My days go 50/50.  Some are great while there are days when I struggle.  I walk a little slower.   But don’t most people creeping towards 60.  Breathing issues come with weight gain but really I didn’t have this much trouble when I was almost 300 pounds.  Yes I was!  Memory issues – we all have them, right? Senior moments have progressed to not remembering key events in my life.  The unexplained mood swings and actually having to talk yourself into getting up in the morning because you just don’t have the energy to move.

There is frustration when people make comparisons to our struggles seeming like it is no big deal.  Our struggles are real.  Isolated symptoms are manageable but when they are all put together it is a nightmare.  The difference in being sick and being healthy is having to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

So what is the spoon theory?  Start with a handful of spoons (say 12)…

If you are healthy, you have a never-ending supply of “spoons”.  But when a silent disease forces you to plan your day, you need to budget those “spoons” throughout the day. So you start with 12 spoons.  You always have to be conscious of how many you have, and don’t drop them because you can’t forget you have _________ (fill in the blank with your hidden diagnosis).

Now, list all your tasks for the day, including the simplest one – the ones you don’t even realize take any effort to do.  Each task will cost you a spoon. Yes, each and every one of them.

Crack open your eyes and take a mental assessment of your body.  Getting out of bed is an effort because you didn’t sleep well (1 spoon).  Get a shower (1 spoon). Wash your hair (1 spoon). Get dressed (another spoon). You are already down 4 spoons and you haven’t even made it to the kitchen. Two more spoons to make breakfast and clean up.  You are down to 6 spoons and you haven’t gone to work.

Commuting to work (1 spoon).  Sitting too long, one of the toughest things for me (another spoon),  Lunchtime – skipping could cost you a spoon.  Three more gone and half a day of work left. More long hours sitting or a hectic day at the office will cost you another spoon.

Commute home (1 spoon).  We are now down to 1 spoon.  Dinner to prepare, laundry, prep for the next day at work or maybe you were supposed to meet friends for a movie.  You may not be able to do it all.  OR, if you do it all, who knows what tomorrow will bring.

So, what happens when the spoons are gone?  We are done – unable to push any further and it is time to rest or crash.  Regardless of what your silent disease is, we live with the looming thought tomorrow may be a better day BUT it could be worse.

The hardest thing for me is slowing down.  I want to do it all. I want my old life.  I hate missing out on things. I get frustrated,  I need to think about the whole day’s plans before I can attack any one thing.  I miss the freedom of just doing. . I miss never having to count “spoons”.

I share this not for sympathy but so others can understand the challenges of those with a silent disease.  I see this as a blessing just as I saw my addiction as a blessing. I am forced to think about everything I do. I am forced to be in the moment and not waste time or energy.

Do you know someone who is struggling with a silent disease?  Take a moment and give them a hug to let them know you NOW get it.

Have a ThirtyOne-derful day!

Last Minute RSVP

Is your mailbox or email filled with invites?  It seems like there is always something going on. Someone is having a party,  getting married, or graduating.  Summer at the shore brings lots of invites for barbecues as well. I love getting invites and catching up with old friends is so much fun.  Today is a glimpse at life with a chronic illness…..

But these days, the excitement of an invite brings on a whole new realm of questions…. what’s the weather going to be like? Is it going to be outside in the middle of summer? Do I have anything else planned around the same time where I might not have enough energy?  Will brain fog cause me to forget names and memories?

It is frustrating to always have to mark myself as “maybe”.  As much as my first thought is to say yes, I can never be sure how I will be on any given day.  The outside often fools people if they don’t understand what is happening on the inside.  I feel like I’m always marking off ‘maybe’ on Facebook invites, or doing at the very last minute RSVP’s. I don’t know about you but one of my pet peeves for years was when people didn’t RSVP to an invite or waited until the last minute. I always wanted to get a head count – the planner in me, but now I’m the indecisive person.

It’s not because I am procrastinating, I just have to be careful I don’t over commit myself, or you count me in and I end up having to cancel. I worry about what you will think.  Which one is more embarrassing –  sending a last minute RSVP or saying YES right away, only to have to cancel at the last minute.

Even though I am ALWAYS cold, it is easier for me to commit when it’s not during the warmer months (or extreme cold ones).  Now, living at the Jersey Shore makes it hard to judge and often a small window.  I may be cold BUT the heat is draining for many of us with MS.   I stopped doing outdoor events for just this reason.  It takes a lot of energy out of us.  I have been at parties where everyone is outside, and I keep going inside by myself.  People think I am hiding and in some ways they are right…. hiding from the heat or from sensory overload, or a multitude of other things which spring up unexpectedly.

I LOVE to plan but life takes on an entirely different planning process now.  I don’t want to be mean, and I don’t want to be the annoying person who waits until the last minute to RSVP.  I’m actually holding off to make sure I can actually attend and not have to duck out early or be a party pooper.

If you are reading this and you know someone with another chronic condition (you know I struggle with MS), don’t give up on them or take it personally.  I’m sure they, along with me, appreciate you’re thinking of us, and we don’t want you to stop inviting us.  It just requires we plan and plan and plan some more, and something still might happen to where we can’t make it the day before or day of.

I am learning to “Expect the unexpected”. I’m grateful for a supportive hubby who helps me to keep this in check.  I also need a lot of reminders, because I will forget thanks to the dreaded brain-fog.  Or worse, I will get confused on the dates/times, etc.  There are periods of never ending confusion, planning and forgetting… just to repeat the cycle multiple times.

The bottom line I’m getting at, is don’t take it personally when we don’t RSVP right away.  I know it’s annoying not to have a head count, and I’m trying my best to give you one. It’s stressful trying to juggle everything in the first place. It can also be very emotional for me to deal with… It can be upsetting and depressing at times.

Life with MS (or others with any chronic disease) has changed me in so many ways…. those who are with me daily see the good days and the bad days.  They get it and remind me when I tend to forget. Others struggle to understand.  Overall, I’m blessed to have an amazing support system.  So the next time it takes me forever to RSVP or I decline, don’t take it personally.  Know in my heart I would love to be there but it may be a day I’m struggling with MS.

Have a ThirtyOne-derful day!