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MS Awareness Month – March 2022

March is MS Awareness month, and every year I ponder if/what to share about the experience of living with a chronic illness, specifically MS.

I invite you to spend a moment with me as I share how MS impacts my life, and work, and what I do to “keep myself in the game”! My disclaimer is this: – MS impacts everyone differently – what I write here is my experience – I do not speak for anyone else.

I have “relapsing-remitting MS” – this means there are periods when my disease state is very stable(remission), and periods where it is active and unstable(relapse). MS is an autoimmune condition, where my immune system is attacking the myelin sheath which surrounds my nerves. (Think of the rubber sheath around electric cables). So, all through my brain and nervous system I have “wounds” on this casing which causes the nerves to sometimes be hypersensitive, and sometimes desensitized. These wounds aren’t constantly active – it’s like any wound – it’s inflamed for a while when it is new, and then over time it heals, and I have a scab and then a scar. (Multiple Sclerosis literally means “many scars”) 

The number one symptom that I currently deal with is fatigue. MS fatigue is different from the normal fatigue that everyone experiences after a long day or after a physically/mentally/emotionally draining activity.

Messages are constantly sent to and from the brain through the nervous system to keep every function of the body going – you breathe, you think, you adjust your body if something hurts, etc. The messages that flow in my central nervous system keep hitting speed bumps and roadblocks (the wounds and scars) as they travel to and from their intended destination. As a result, they either must find a new route around the scar and take a lengthy detour, or they must work harder to get through this bumpy area. Before I have started anything physical or cognitive my body/mind is already tired. It also takes me longer to recover (I just don’t wake up refreshed the next day).  As my fatigue increases, my ability to concentrate diminishes, and my sensitivity to noise, unexpected touch, plans changing, etc increases. I actively work to manage this by sleeping well, eating nutrient dense food that supports my body/mind, and NOT putting myself into a situation where I am going to be “too taxed.” The consequences of “pushing through” are not being able to walk or being stuck in bed for a week while my body tries to recover – it’s a high price to pay for not listening to my body or taking care of myself.

A physical example of this is going for a walk. If I go for a brisk walk without any aids (cane/grocery cart/arm of someone) after 7 minutes I will start to lose my vision. I will then need to sit for 10-15 minutes and rest until my vision returns. Next, I need to get home asap, take it easy for the rest of that day and maybe the next. If I have a grocery cart or my walking sticks to assist, I can typically go a bit further, (like 15 minutes). This takes having a physical job off the table.

My job is not physically taxing, I do bookkeeping work and I sit at a desk.  It is highly cognitive though which requires attention to detail, and the ability to communicate with others. Reading, math, accuracy, and other cognitive functions keep multitudes of nerves firing in the brain – my brain is full of scars, so these activities are more tiring to me than they used to be. There are times when I can not focus, when I will not have the strength to pull my brain to a place where it can concentrate on what someone is telling me, or the calculations that I need to complete. There are often times when I can’t find the word I am looking for when I speak – it’s like in the middle of a sentence I will just hit a wall – or I will say a similar word but not the one I mean (which can be quite comical – like the time I wanted to say “tactile” and I said “tactical” – very different meanings when substituted into the same sentence).  Getting interrupted can completely derail me, I will forget what I was talking about and what I was planning to say next. To function at my best and do an excellent job, working 40 hours a week is not possible. This means I need to find an employer who can accommodate my disability, and who can see the value that I bring to the organization and who is willing to work with me to realize that full value within the constraints that are my reality.

The last relapse (new disease activity/wounds) I had was in the summer of 2020 after being unable to access my monthly massage due to the covid lockdowns. I require and rely on massage and other treatments to stay mobile!

Was it a bad relapse – NO – I was not hospitalized; I did not need to have a round of steroids although it was offered.  Was it a bad relapse – YES – I was bedridden 5 out of 7 days a week, I started to experience a new symptom called “trigeminal neuralgia” which for me felt like someone pushing a very cold rock into the left side of my face at random intervals throughout the day.  It was more frequent in the late afternoon and evening when it could occur up to every 3 minutes over the course of several hours. It could have been a lot worse. These symptoms persisted for about 6 weeks.

It took months to heal from this relapse. Physical recovery included a lot of time in bed, heavy duty herbal anti-inflammatories($$$), 8 weeks of massage and chiropractor treatments($$$), getting a chair to use in the shower, and needing more help from my family around the house. Emotional recovery included working through fears like: “Will I recover this time?” “Is this the one that’s going to land me in a wheelchair full time?”  “Am I going to need help to shower and wash my hair?”  “Will I feel tired forever?”  “Am I going to lose my job?”  “Am I going to lose my friends?”  “When will the next one hit?”

I am VERY happy to be on the other side of this relapse, and I do my best to take one day at a time and trust that I will have the capacity to deal with whatever the future holds when it becomes the present.  Some days I rock at this…some days not so much!

One topic frequently discussed within MS communities is whether to disclose to your condition to your employer. Sadly, the experience of the majority has been a lack of understanding, ridicule, and ultimately loss of employment after receiving their diagnosis, or disclosing their condition at their workplace. Thankfully that has NOT been my experience and I consider myself blessed to have employers who I can be honest with and coworkers who are patient. 

#MSAwarenessmonth #chronicillness

1 comment March 31, 2022

10 BENEFITS OF A HOSPITAL STAY

It is Thursday evening around 5:30pm – I have just arrived home from a 5ish day hospital stay which started with a trip to ER last Saturday morning around 10.

As with any lengthy hospital stay, it has been both exhausting and restful. There have been tears and laughter. There have been many questions and answers, pain and relief… on one particularly difficult day I started a list of 10 top reasons to stay in the hospital – it provided some amusement for me as well as a reprieve from the self-pity that was starting to get boring. (sometimes I irritate myself)

So I am sharing my list with you for your laughter and enjoyment! (I know most of my posts are more serious – this is NOT – just a look at the “lighter” side of what is always a serious situation) (I am also heavily medicated, so I appreciate your understanding of grammar/spelling errors)

11. (I know I said 10, but I thought of an extra one!) Having your own TV in your bedroom – I know this is common in many households, but it will never happen in ours, so it was a treat for me!

10. Remote Control – When you need a new battery for your remote control, you just push a button and someone will replace it for you – it’s almost like having a SUPER POWER!

9. Cleaning – every morning someone comes into your room and mops the floor and empties the garbage – you don’t even have to ask!

8. Water – every morning when you wake up there is a fresh cup of cold water with a clean straw and everything just waiting for you beside your bed – its like MAGIC – just appears!

7. Your bed is very fun to play in – it can go up and down at the push of a button – and when you are confined to your bed, … small amusements make the day more fun! (SUPER POWER!)

6. You don’t have to wash any dishes!

5. Fresh Towels are delivered to your room every day – and again – you don’t even have to ask! (MORE MAGIC!)

4. Experiments – well, you have a lot of time on your hands to try new and random things – in the absence of cotton balls, I have discovered that an O.B. tampon is actually a fairly decent tool for removing nail polish (dad – if you’re reading this – sorry) you have to remove the plastic outer layer, but it’s almost like using an eraser – I may experiment with a few other brands and completely switch from using cotton balls all together as a tool for polish removal.

3. Breakfast in bed – I have had breakfast in bed for 4 days in a row – FANTASTIC! (no food Sunday morning because I was still in ER) I must be a SUPERHERO!

2. Visitors and presents – I have had lots of visitors and received lots of gifts – I appreciate everyone who has come by, as well as those who I know are sending their love and prayers from home! (I am concluding at this point that I am a SUPER HERO :))

AND FINALLY – DA DA DA DA….

1. NO BRA – (sorry dad) I have not put on my bra in 5 days, my heavenly bodies are truly rejoicing! Happiness and Joy!

In all seriousness – I am not trying to make light of hospital stays, they are serious as was this one, but sometimes delving into the utterly ridiculous is necessary to help you get through the harsh realities of life. I’m grateful to be home and being cared for by my two male nurses! And remembering my roommates who are still there for at least another night.

3 comments August 21, 2014

Who am I?

I have been exploring and discussing this concept of “identity” in a variety of different venues and for different reasons over the past several months, and it has been an interesting and irritating process.
It is certainly an important thing for a person to consider – and I am not for a minute suggesting otherwise. I typically enjoy “processes” and learning and exploring concepts and definitions. I find that it helps me broaden my understanding and opens my mind to fresh ideas and opportunities. I am also better with details than big picture thinking, so it is with some surprise that I find myself “tired” of the process and wanting to look at the concept of identity from farther away. But sometimes I wonder if we don’t get so focused on the specifics that we miss the wonder and awe of the larger picture. And I ponder how we can preserve one while exploring the other – because they are both important and serve us in different ways. I could go on and on, but the point of this post is just to answer this question as succinctly as I can:

Who am I?

 I am someone who has chosen to accept the gift. Beyond that, who I am as a child of God is an identity that has been given to me. It is not something I have developed or have chosen to take on myself.

If you are a Christian, I invite you to just sit with that for a minute – re-read it if you like.

If you have read this post and are not a Christian, you may not have a clue what I mean. So let me explain – by gift – I mean the gift of salvation which is offered by God to all. The Bible says “For God so loved the world that He gave His only son (Jesus) that whoever believes in Him will not perish but have eternal life” (John 3:16) and also that “If you confess with your mouth, Jesus is Lord, and believe in your heart that God raised Him from the dead you will be saved.” (Romans 10:9) – Once we accept this gift we become children of God and enjoy a new identity which includes being forgiven, greatly loved, holy, blameless, alive in Christ, victorious, a light, redeemed, … and much more. These qualities, traits, and truths are given to us as God’s children.

(For a great list with scripture verse references, see: https://www.ficm.org/handy-links/#!/who-i-am-in-christ)

1 comment March 22, 2014

“I MUST TELL JESUS”

Many of you will be familiar with this hymn if you grew up in any type of semi-traditional church experience.  I love hymns, and miss having them as a regular part of worship each Sunday.  This is a familiar one to me, and for those of you who aren’t familiar with it, I will include the lyrics throughout this post.   

 V1                  I must tell Jesus all of my trials,

                        I cannot bear these burdens alone.

                        In my distress He kindly will help me,

                        He ever loves and cares for His own.

 There are many reasons that I love hymns, but the number one reason is the lyrics.  I find them to be challenging, heartfelt, emotional, and eloquent.  If I happen to know the “story” behind a hymn and why it was written, my response is often heightened.  I wonder, “Could I write words such as these in the midst of a crisis or trauma in my life?”   “Do I know this Jesus that the hymn writer knows?” Hymns are a reminder of my Saviour, and His great love for me.  They often share a picture of the interaction of another believer (the songwriter) with our Father and as such I also find them deeply relational. 

 Chorus         I must tell Jesus! I must tell Jesus!

                        I cannot bear my burdens alone;

                        I must tell Jesus! I must tell Jesus!

                        Jesus can help me, Jesus alone.

 The “thing” I’ve been pondering in this particular hymn is a word in the very first line.  “Must”  It doesn’t say I “should” or I “could” or I “might” tell Jesus.  It says I MUST – I am compelled to, I don’t have a choice in the matter.  The definition of “must” is: to be obliged to, it expresses necessity or insistence.  So, my question is – do I ever feel that way?  That I MUST tell Jesus something?  Is He my first inclination when things are not going well, or even when they are? The words of the hymn continue to go on and explain why the author MUST tell Jesus all of his trials – the reason being that it’s Jesus who is a kind, compassionate friend who will help His children if we ask and who ever loves and cares for us.  Do you believe this?  I have experienced this in my own life, BUT I can’t say that when an obstacle strikes my automatic response is to hit my knees.  I usually HAVE to tell someone, but it’s not usually my Saviour who’s first on the list. 

 V2                I must tell Jesus all of my troubles,

                        He is a kind, compassionate friend;

                        If I but ask Him He will deliver,

                        Make of my troubles quickly an end.

 I want to be like the author of this hymn – to know to the deepest core of my being that Jesus is MY kind, compassionate friend.  That He will love and care for me as He has promised in His word, and shown throughout my life.  I want the first cry of my heart to be to Him – no matter what the situation.  What about you?  Do you want to practice this with me?  I believe that as we study the Bible and learn more about Christ, we can choose to trust more and more that what He says is true.  As we deepen this relationship our response to life’s troubles will be to turn to Him first.  Let’s start today.  What MUST you tell Jesus right now?

 V3                 Tempted and tried I need a great Saviour,

                        One who can help my burdens to bear;

                        I must tell Jesus, I must tell Jesus:

                        He all my cares and sorrows will share.

 V4                 O how the world to evil allures me!

                        O how my heart is tempted to sin!

                        I must tell Jesus, and He will help me

                        Over the world the vict’ry to win.

“I Must Tell Jesus”  by Elisha A. Hoffman, 1893

P.S.  Alex did not know this hymn as he was “proofing” my post and asked me to sing it for him.  Then he made an outrageous suggestion… so if you’d like to hear how the hymn goes (and me ending in a different key than I started) feel free to listen to the mp3 by clicking this link.      I Must Tell Jesus

8 comments September 25, 2011

Gratitude

A Grateful Heart

The definition of gratitude is: “the quality of being thankful; readiness to show appreciation for and to return kindness.” 

Many inspirational speakers encourage a person to start a “gratitude journal” and develop a personal practice of taking note daily of things we are grateful for.  Several studies on gratitude suggest that grateful people are more likely to have higher levels of happiness and lower levels of stress and depression.  They also have more positive ways of coping with difficult situations in life. “Gratitude and well-being.” Wikipedia.  So gratitude is not only good for the “soul” but also the body, which leads me to wonder – does showing gratitude benefit me more than the person I am expressing it to?  My motivation in expressing gratitude is to impact someone else’s emotional state in an encouraging way, to make them feel appreciated, or helpful.  I do it because I was raised to have good manners; it’s almost automatic (most of the time). 

Writing a gratitude journal sounds like something that would have a positive impact on my life, and at the very least be a FUN thing to do.  Ultimately though, I am challenged to answer the bigger question:  “Am I grateful for the things I feel I deserve?” Is it this type of gratitude that could significantly impact my life?  Change my attitude?  Alter my perspective and focus?  It is easy to be grateful for a gift from a friend, or a surprise blessing, but what about my pay cheque?  Do I put it into the same “gratitude” category as a spontaneous note received from my sister?  Or do I feel because I “earned” it that I don’t need to be grateful? 

1 Thessalonians 5:15-18 says:  “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” (NIV)  So here I am given CLEAR direction.  “All circumstances” means my gratitude should not be attached to my sense of entitlement.  How humbling is that?  How do I begin to experience this in my daily life?

The word “quality” is used in the above definition of gratitude, and the definition of a quality is: “an attribute or characteristic possessed by someone – it can serve to identify.”  This gives me HOPE, as an attribute is something I can develop.  I can choose to look for and recognize ALL my circumstances, and have an attitude of gratitude.  It is something I can learn, and practice… with practice I should get better at it.  I would love to have an “identity” of gratitude.  I wonder at how phenomenal an impact this would have in my life, in how I feel about God, myself, and others.

I invite you to join me in developing this characteristic.  I intend to start with a lively dinner conversation this evening about gratitude and ask my family to identify things they see in my life that they think I should be grateful for.  I’m going to ask the Lord to reveal to me more and more when my attitude needs to change from one of entitlement to one of gratitude.  And I’m going to practice being grateful in ALL my circumstances.  What will you do?

6 comments May 27, 2011

20/20 Vision

They say that hind sight is 20/20 meaning that when we look back on a situation we see clearly things we didn’t see while we were floundering around in the midst of it.  We have a “bigger” picture and see the story as a “whole” instead of being stuck in one chapter.   

The story of Easter is one that we look at with 20/20 vision.  Jesus life and ministry is culminated in the miraculous, hopeful, wonderful redemptive story of his death and resurrection.  We sing songs of praise and gratitude for His sacrifice.  We read the account in scriptures and are awed at the measure of His love for us.  We marvel at the disciples lack of faith and wonder – how did you not understand when He told you what was coming?

We somehow overlook the fact that they were still in the middle of their story.  They had just seen the most phenomenal human being they had ever encountered, their Teacher, their Leader, their Friend, the man they had walked miles with, eaten with, and loved, handed over to the authorities by one of their own. They watched as He was beaten, humiliated, and crucified, without saying a word in His own defence.  Imagine the shock and disbelief, their fear and uncertainty about what they should do, the despair and grief that it was all just OVER.

I can picture them sitting together shaking their heads in confusion and saying “what?!?” Trying to wrap their brains around the trauma they had just witnessed.  The next 3 days must have felt like a lifetime, existing in a fog, going through the motions, not eating much, asking each other –  “What should we do?  Should we have done something differently?”  Perhaps they were thinking about getting revenge on the Romans or even Judas  and possibly feeling guilty about those feelings as Jesus message had been one of love and forgiveness.

Can you feel the tension, can you sense the conflict raging within them, the disbelief, the hopelessness, the devastation as they tried desperately to come to grips with reality even as they wondered what kind of nightmare they were living.  And then – the resurrection – ahhh the sweet wonder of seeing their Lord ALIVE – what?!? Maybe some 20/20 vision started happening, but maybe not, their story wasn’t over yet.  

Where are you at in your story?  Are you at the beginning of a new discovery, looking forward a promising future and a happy ending? Are you looking back with 20/20 vision having come to the end able to see clearly the irritations and “whys” of the middle? Or are you in the midst of 3 dark days, barely able to tell which direction is up, not understanding why all this is happening, what to do, and wondering if it will ever end?!?  What will your response be – can you choose to believe that at some point in the future you will be able to look back with a different perspective than the one you have right now?  Can you cling to the TRUTH you know and try to hang on with the knowledge that the 3 days of darkness won’t last forever?  The Easter story is one of HOPE – it shows us that our God is all powerful, and we can take that hope into our own lives knowing that our story here on earth is not over – the end of our story has not yet been revealed.  Right now only God has 20/20 vision.

11 comments April 17, 2011

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