A Thousand Words

This quote is how I feel sometimes. There are people in my life that just being with them makes me feel accepted and understood. 

But all too often I am faced with the obstacles with some people who will not understand me. That lack of understanding sometimes makes me feel the loneliest.  

I want my friends and family to understand how this disease has changed me. Congnitively and physically I am not the same person I was. I am embarrassed to tell them how it affects my ability to provide directions as simple as left and right when we are driving in the car, it causes pain and flushing on my skin where just the softest touch makes me cringe. The same disease gives me issues with my bladder and bowels that I'm far too embarrassed to share with even my closest friends. 

MS has also affected my sleep which is so important.  I lay awake at night with muscle spasms, tremors, restless legs, flushing. 

The physical changes and limitations are almost easier for me to accept and explain to myself and others. It's the cognitive changes that scare me and make it hard to explain to others. I remember 12 years ago before I was pregnant with McKinley I had an 'episode' where I wasn't able to have control of my speech....words didn't come out right. I tried to explain to my husband, my doctor, my friends but I couldn't even find the words. Eventually the issue went away and by the time I had an MRI appointment I was expecting so it was forgotten. 

Now looking back I realize that was probably the first time MS was making an appearance in my life. 

I have issues with my speech and cognitive thinking almost daily now.  The word is right there but for the life of me I can't speak it. An example is giving my husband directions in the car. You would think an easy thing like left and right would be simple, a child could do a better job than I can now. And every time it results in an argument or an annoying look from my husband. 

Because I can't put it into words without feeling completely incompetent and useless I stumble through the dialogue. Even if I did try to take the time and really explain to him how things don't work right with my thoughts and speech he isn't really going to get it. 

How do I know that?  Because 15 years ago I was him. I was that person who was annoyed when my mom couldn't find the word in her conversation. She couldn't provide sequential instructions or directions when asked.  I get it now and I'm truly sorry I didn't before. 

The last "First"

Today is the first year anniversary without my mom. 

A year ago I held her and cried while I said goodbye. 

I know she is with dad and no longer in pain but selfishly at times I wish she was here. 

The last 12 months there has been a lot of firsts. There were ones I prepared myself for like the holidays. But there were the unexpected ones that snuck up on me. They took my breath away and had me trying to hold back the tears. 

They were the times I reached for the phone to share the good news, when I was sick, when I wanted to talk to someone who could really understand when I was dealing with an ms setback. 

Having made it through 365 days without my mom means that there will no longer be the firsts, but my wonderful grandma shared with me that the seconds and thirds will still bring the sadness and tears but we will also feel the comfort and faith that gets us through the hard times. 

Things I'm missing

The past few days have been difficult for me. 

After a doctors appointment this afternoon I am ready to admit I am dealing with a setback with my MS. I always hesitate to use the term "attack".  Part of the reason is that I hate the word, it sounds mean and defeating.  Setback is somewhat more positive and at times like this I need to find all the positives I can.  

So, I admitted today that I am dealing with a setback, but it is somewhat familiar in the symptoms I experienced with my first attack.  While the symptoms are maybe easier to accept since I have had these obstacles in the past, they all bring back the emotions and feelings I experienced at the start of my diagnosis. 

In a matter of days Ive gone from feeling strong and victorious to incompetent and negative. 

I am constantly reminded of my inabilities. I remember the abilities I lost and took for granted the first battle.  I promised myself that if and when I regained those things I would never take them for granted again. But I did.  

Things I miss:

My right hand things I used to do without thinking.......

Writing

Typing

Brushing my teeth

Eating with utensils

Cutting with knives

Folding laundry

Turning the keys in the ignition

Picking up stuff

Shaving my legs

Brushing my hair

Putting in a ponytail

The list goes on.  The part that gets me is how what is seen as simple things can cause me such strong feelings of incompetency.  Part of me wishes I appreciated the gradual increase in my abilities more.  Maybe the loss of them again wouldn't be so hard to take. 

But then again I think maybe after a few days of a pity party I'm ready to take on this challenge. 

The symptoms are no longer getting worse.  My MS hug, while uncomfortable doesn't scare me as it was something I suffered the first time.  The itching and hives I wake up with at night has lessened with Benadryl. The stumbles in my steps are less frequent and improve with rest. The numbness even though much worse is still something I am familiar with over the past 4 years with this disease. 

This "setback" is something I will get past and if I am lucky the things I am missing will once again become something I take for granted. 

Thankful

Despite my MS worsening the past few days I woke up this morning and made a concious effort to stay focused on being thankful for all the blessings in my life. 

I have been struggling with handling the stresses in my life which is making things really tricky with my disease which is so very impacted by stress. 

I was disappointed that my body let me down. That my stress has affected me physically.  But then I started thinking...what if I am handling the stress the best that I can right now?  

What if my body is doing the best it can with what it has right now?

I am thankful I have not had an attack, for the love and support from my family and friends in my life, for the quiet moments of peace with my favourite music.  

Today I am going to focus on the blessings I am thankful for, big and small.  I will push aside the fears and uncertainty about the unknowns and what I cannot control. 

Collecting Memories

I'm on the drive back from a wonderful family vacation.  

Bob and I took the two little kids to Clear Lake for 5 days. And all 4 of us enjoyed it so much. 

I kept coming back to the saying.....collect memories not things.  

And that is exactly what we did. And we collected a lot of wonderful happy memories. The joy we saw in the kids eyes, the laughter, the closeness between siblings....it was all good. 

I truly enjoyed my family. It was so nice after a crazy busy 6 months with Bob's business to see him unwind and reconnect with his family. My heart overflowed with all the blessings this week. 

There were times I thought of my parents when I saw a grandpa getting ice cream with his grandkids or a grandma getting pushed in a wheelchair. But I know my parents were looking down and proud. The new memories we created also caused another positive. It brought back a lot of memories from my family holidays as a child. I shared all of them with Bob and the kids and felt a little closer with my parents because of it. 

In two more weeks we are going to collect even more memories with Tay and the little kids plus the Calgary cousins. 

Looking forward to collecting more priceless memories.