Happy Anniversary

Today marks the third year of living with the knowledge I have MS. It is quite the anniversary celebration. A time of reflection as I am sitting in my Mom's hospital room with her while they keep her comfortable. 

For my Mom it is over 18 years that she has been living the the knowledge that she has MS. 

And she has been brave and fought a good fight but she is growing weaker and more frail each day. 

As I was driving to Melville to spend the day with Mom I shed a few tears for the Mom I have already lost. No longer can I call her on the phone and share in our days with each other. I miss picking up the phone and talking to her. Because her voice is so weak and barely a whisper I now dial the hospital or nursing station to ask if Mom is comfortable.

I try to take comfort in the fact she is spending more time sleeping which means she is comfortable. But I am sad for the moment I miss. 

I am also saddened by the scared look that overcomes her at times when she is awake. I know she has faith and I know she misses my Dad but I also know she is scared and not ready to leave this life yet. 

As a daughter with the same illness I struggle to remain strong and not give into the fear of my unknown future and what may lie ahead for myself and my family. 

The other morning my sweet little 6 year old was snuggling with me and telling me how sad he is for Grandma. During the conversation my bright boy came to the scary realization that his Mommy has the same disease that his Grandma has. I saw the thought process on his face and the look of fear when he figured it out. 

I tried to explain to him that each person with MS is different and that there are people working hard to find a cure so that people don't lose their loved ones because of MS. 

At the end of our talk Reid felt a little reassurance.  Even I believed the promise of hope I heard in my voice. 

Faith and Hope.....perfect anniversary gifts. 

Touching...

After a rough night from my injection I woke up with more than my usual degree of parathesia. 

I know it's normal because of my fatigue. It also increases with the cold and today is certainly a cold day. 

I googled what I'm struggling today. I did it because I feel less alone when I read the words that someone else wrote and it so accurately describes what I'm living. 

Parathesia

Changes in the sense of touch called paresthesia are seen with MS and are experienced as a sensation of tingling, numbness, deadness, itching, burning, etc.

■Numbness can be the inability to notice a light touch, pinches or feel heat and cold. Due to the fact that numbness can result in a reduction in sensitivity, the chances that a patient could accidentally injure a numb hand or foot are increased. Precautions must be taken to protect the area from receiving cuts, blows, bruises, burns or any other kind of injury.

■Itching is a feeling of tickling or irritation in the skin that makes you want to scratch the area. Itching (also called pruritus) can appear suddenly and be quite intense, although it usually does not last very long. It can appear on any part of the body and the face. The itching associated with MS is different from regular itching because there is no irritation or rash on the skin.

■Tingling is a bothersome, tickling feeling in any part of the body and is not cause by an external stimulus (skin irritation) or a lack of circulation (leg "fell asleep").

■Burning is a feeling of sunburn. These changes in sensitivity can occur in any area of the skin, but it is usually felt in the fingers, hands, feet, arms or legs.

I remember early on in my MS my goal was to be normal again, lose all signs of MS. No more parathesia. Somewhere along the way that stopped being my goal. I think that's because it's no longer realistic. Instead I need to focus on a goal that is attainable and not set myself up to fail.  

Today my MS is worse than yesterday, but my goal is that tomorrow will be a better day. 

Alone vs. Lonely

I've been alone but not lonely. I've also been surrounded by others and lonely. 

The two words mean two very different things. I am ok being by myself, alone, content with the moment. What fills me with sadness is the feeling of loneliness, especially when you are with other people. 

This week I had a neurologist appointment which I was very anxious about.  I couldn't convey my fears and concerns to my friends and family.  After the appointment I had a lot of information from the doctor to process but no one to process it with. This made me feel very alone with my MS. It ended up where an entire day passed where my husband didn't ask about my appointment and I didn't initiate the conversation. The more time that passed the harder it became to open up and let him in.    

While I would never wish this disease on anyone, it hurts knowing that while those that love me will always support me they will never understand. I know this because I used to be just like them. Listening to my Mom speak of her MS I heard what she said, felt sadness for what she was going through but I could never truly understand......until now. 

I can share my fears, my feelings, my thoughts but my friends and family can't understand and that makes me alone and lonely. 

Music



My husband and I went to the Brad Paisley concert a few weeks ago and the experience for me was made so much more special because I was able to share it with him.

We have done many concerts over the years, particularily my obsession with Big Sugar, but this was the first time he humoured me with my love of country music.

I was moved not only by the words of Lee Brice and Brad Paisley, but I was moved by the memories created with my husband.

What I didn't share with him but was overjoyed to feel was the vibration and humming that went through my body as the band played.  As I sat there holding my husbands hand it hit me that for that moment I didnt feel I had MS.  My hand, the tremors stilled by my husbands hand, the numbness and tingling no longer noticable as the music hit me and filled my entire bodu with the vibration of the music.

I felt no pain, no MS. 

Feelings of wonder beyond my ability to explain

The heart wants

Today I was struck with a phrase I heard before but didn't really understand. And today I got it. 

"The heart wants what the heart wants"

I received a text from my brother today.

I only hear from him when he wants something. My Mom, although she lives in the same town as him sees him and speaks to him far less often than she does me. I'm angry that my brother is selfish and that the responsibility of my Mom almost always falls directly on my shoulders. 

I didn't reply to his text until later tonight as I was leery and already had a troubling conversation with my Moms nurse about her current state of health and the decline I am seeing. 

Once I finally did reply to my brother he asked about Mom, talked about how he wanted to visit with her. I found myself unloading my fears and concerns about our mothers health to him. In the midst of all his selfishness I find myself longing to have a relationship with him. I would love to know that I am not alone in my thoughts, feelings and decisions about our Mom. I would love to not feel so alone. 

I have my own set of issues each time I walk into my Mom's room. I try not to think about my own MS and how seeing her makes me fear for my own future and what I may end up leaving my family to deal with. But it's hard, those thoughts are easy to come and while I would never wish this disease on my brother, I would welcome his support.

So, the heart wants what the heart wants means that the heart is not always reasonable or logical.  It knows that sometimes while what you want isn't good for you or even realistic it doesn't stop you from wanting it. 

So tonight my heart is wishing I had a brother I was close with, that it could tell my fears to, that could help ease the burden of caring for mom. That's what the heart wants. 

Scratch that itch

After a night filled with little sleep I am struggling today.  It hs reminded me how important a good nights rest is for a peron with MS, or at least for me.
The reason I had such little sleep was due to my MS so things get tricky, making it a bit of a vicious cycle.
The sleeplessness was due to one of the harmless but crazy symptoms of my MS.  Itching and numbness plagued me into the wee hours. 
I knew better this time then to wake up my husband and have him check repeatedly for a rash.  It was my brain being tricked by the lesions from my disease.  It had me up scratching my neck and chest most of the night.  It does calm me slightly having been through this before, knowing I am not going crazy.....knowing that it will pass.  Those thoughts kept me calm as I laid awake and itched. 
What they did do was make me very tired this morning.  I notice I am slower in moving today, slower in thinking, my hands are colder than usual, coordination is worse, tremors are more noticable and my numbness increased because of my fatigue.

Because I was calm but wide awake I was able to do a lot of thinking.  Got a lot of productivity done in my head with To Do lists etc.  And I also thought a lot about my Mom.  We went to visit her on Saturday.  The visit was a really nice visit for the kids and me. Because of my optic neuritis and the busy return to school schedule etc, it was a month since the last visit.  I was saddened because I was able to quickly see how much more the MS has taken from her.  Her right hand is no longer able to move at all.  Her fingers now formed into a crippled and dysfunctional mass.  What did stick out in my memory from our visit is her comment, "I can print and eat with my left hand now." 
What's awesome is that in the midst of everything that this disease has taken from my Mom, she is able to tell me what she can still do.  Or even better, what she has learned to do inspite what the disease has taken.
So proud.


   

Winner

October 4th is our anniversary. Not just any anniversary either. This is 10 years. 

I have been thinking a lot about the fact I have been a wife to Bob for 10 years. 

I'm married and in love with my husband. I know this with everything I am. 

And I also know without a doubt that Bob is right where he wants to be and he loves me.  

I think about all the changes that my MS has brought into my life. I am healthier, fit and more active.  I have a positive outlook on life, live my days to the fullest and without regrets. I realize the truly important things in life. 

Another change over the past few years is my relationship with my husband. 

At the risk of sounding mushy I am so completely in love. I hear often the words "I love you" and even in the moments I don't I NEVER doubt his love. 

The differences happened over time.  It was little things, but mostly it comes down to telling the people you love that you love them but also showing them. Little things like a random card reminding them how happy they make you. The late night talks in bed about all the good things in our life together. The lingering kiss as I'm heading out the door. 

In less than two weeks we are going to celebrate a milestone that I am so proud to have reached. Not only have we reached the 10 years, we have grown and improved our marriage and I love and am in love with my husband. 

It sometimes feels like my life is too good. I have a so much wonderfulness in it that sometimes it feels like I am going to burst. 

Instead I am going to smile and take in the good, the wonder and the love and enjoy feeling like I'm winning!

Blink of an eye

The phrase, "in the blink of an eye" has new meaning for me. Last Saturday I woke up completely normal.  Over the course of the morning that quickly changed.  As I was standing at the kitchen island enjoying the morning time with my children I began to feel different.  I was dizzy, light headed, nauseous,had difficulty standing and even further difficulty walking.  I also noticed a pain in my eyes and my vision blurred and greyed.  Huh?  This was new.  Vision problems were what other people with MS had suffered from.  not me.  I was the parathesia, bladder and tremor patient. 

Saturday I learned that my life can change in a blink of an eye becaue of this disease.  I was forced to take different turns.  I did not want to lay in bed and wait for this relapse to pass.  I had plans, a weekend to enjoy.  Instead I laid in bed angry at this disease.  I tried not to stress, not obsess over every twinge. 
I called the doctors, nurses, I leaned on my friends and husband for support.....and in the end I made it through the relapse.

My vision still isnt 100%, but its close and its continuing to improve.  I am learning that my goals, dreams and priorities are going to take some paths I hadnt planned.  I have also been reminded that I need to remember and focus on all the good, be thankful for the wonderful things in my life. 
Because everything can change.......in the blink of an eye.

Giving Back

I attended a "Living Well with chronic illness" through my employer and health region a few months back. I completed the course feeling empowered and with a strong desire to help others. 

I remember the beginning months of my diagnosis and how I felt.  Helpless, afraid, powerless, alone. 

I want to make those months a little easier for someone else. I want to make the dark moments a little less dark for them. 

I agreed to take the peer training to facilitate this course for others living with chronic illness. I think not only will it keep me in check and using the tools I learned, but it will also give me a sense of purpose. 

If I can make things even just a little easier for someone going through a dark and hard time I want to do it. 

Even if it is as simple as someone sitting in the course realizing, "I am not alone, there are others with similar struggles and feelings". 

Before I learned anything in this course, just sitting in a small group listening to others share, I already felt validated. 

I have always had a wonderful and positive support system with my friends and family.  But while they are always supporting they thankfully could never relate. Sitting next to someone who can't feel their hands, has balance issues, tears up thinking about the unpredictability of their future has calmed me and made me stronger. 

I have signed up to the peer instructor course so that I can help people out of the dark and times and let them know not only are they not alone, there are people who can relate, show you tools to make things easier and give you hope. 

Our Family....

My favourite quote, which adorns many of the walls in our home is:

Our family is a circle of strength and love,

With every birth and every union the circle grows,

Every crisis faced together makes the circle stronger. 

After the truly wonderful memories we have made on our family vacation my thoughts are on my family and how blessed I am. 

Just before this vacation our family faced a few crisis'. My 17 year old made some really bad choices which luckily did not end with the serious consequences that it could have. It was a good reminder than she still is a teenager and she still has her lessons in life to learn. This crisis also made me realize that being a teenager back in my days wasn't as scary and complicated as it is now. 

I was disappointed in her choices, but through all my anger and disappointment I kept repeating to her how much she was loved. In the midst of this crisis when I saw her tears and the fear in her eyes I felt the need to remind her of the strength and love that our family is made up of. 

Our family circle is very strong. I can feel the strength during the crisis moments just as much as I can during the wonderful moments filled with joy. I find myself being thankful and appreciating this family circle more and more. 

I wonder if it is because I am getting older and appreciating the good things in life more?  Is it maybe that with age comes wisdom and I realize that the little things in life are really the big things. 

Here's a list of a few of my little things;

My children's infectious giggle. 

The funny things that my children say that bring a smile to my face. 

The memories created captured by my heart but not my camera. 

A random hug and kiss. 

All the wonders of new experiences through the eyes of my children. 

Seeing my traits and characteristics in my children. 

Walking hand in hand with my husband. 

I think it is going to be hard to top this near perfect vacation spent with family and friends.  I can't wait  to try though.