Bust a Move.

It’s been a tough week.  I find it harder to get up each day because of how impossible the past few days have been.  Believe me, I get up, but it’s with much more trepidation and less excitement than I’ve felt in a while.  I feel I owe it to you to be as honest as possible as I share this journey with you.  I don’t want to sugarcoat my experiences.  Yes, I try to see the best in every day, and I know that comes through in my writing.  However, I’m human, and there are days that just suck.

Days when standing in my kitchen, eating a sugar free fudgsicle as 9am with my morning Dunkin Donuts (they make DD in KCups, but the way–delish), is the only thing that makes me feel better.  Days when watching a marathon of House Hunters International is the only thing that stimulates my mind.  Days when I’ll screen my calls and not respond to email because I just don’t feel like talking.  Yep. I have had many of those days.  I want to be as truthful and raw as possible.

Being diagnosed with GBS is not easy.  It’s physically frustrating, mentally draining, and emotionally exhausting.  I don’t know what to expect each day, so I have anxiety about things that never used to bother me.  If you know me, you know that I’m a planner. Spontaneity and I are not friends.  I’ve tried to loosen up my mindset, because with GBS there is no plan.  You literally take it a day at a time. “Do you want to make God laugh?  Tell him your plans”.   God must be cracking up right about now.  So, I’ll enjoy my 9am fudgsicle and coffee, and start my unplanned days.  But, I’ve been through worse.  So, I will get through this.

With GBS, you have highs and lows, and they hit you at any time.  So let me tell you why the funk.  Had a great day on Wednesday!  Had three tough hours of therapy.  My good friend Marcy met me at the hospital for lunch– She was an inpatient at Bryn Mawr with me.  It’s so great to see someone who was such a big part of your support system, and who’s battling just as hard as you are.  It makes you feel so much less alone.

I then ended the day Boxing on the Wii.  I was using my right hook that I learned when I took boxing lessons a few years back.  Nice to see that I’ve still got it:)  Knocked my Wii opponent right out!  We broke out my iPhone and had a little dance party to Bust a Move by Young MC with all of the patients in therapy.   After a rough day, kicking it to some 90s music was just what the doctor ordered.

I went from having a great therapy day on Wednesday, to hitting an all time GBS low on Friday.  What happened, you may wonder?  Well, I asked myself that about 25 times on Friday afternoon, when I replayed Thursday over and over again in my head.

Thursday was a rest day.  I didn’t do too much.  A few laps up and down the stairs, more organizing of my newly renovated bathroom, and some long overdue thank you notes.  I rested much of the day, watched the end of Season 5 of NCIS (so sad when Jenny Shepard died, but she went down fighting…), and went to bed early.  A very typical rest day.

On Friday, I struggled from the moment I woke up.  Did the usual full body assessment when I woke up, but I wasn’t firing on all cylinders.  The 10 foot walk to the bathroom was a struggle, getting dressed was labored, and the steps down to my front door a challenge.  I headed to therapy without my usual optimism.  I knew that this would be a tough day.  I just didn’t realize how tough it would be.

I barely made it through PT- a lot of feet shuffling, and was a few steps slower.  During Occupational Therapy, (we’re working hard on my triceps and biceps), the weight I’ve been using for two weeks felt 3 times heavier.  I barely made it through my three sets of reps. What was going on??  To stabilize myself, I’ve been training on my cane, but bringing my forearm crutch as a backup, just in case.  Well, Friday, that “just in case” came to be, and I wasn’t able to use the cane at all.  My legs were so weak.  The therapy team offered to put me in a wheelchair to take me to the cafeteria, but I vehemently refused.  I will NOT get back in a wheelchair again.  I don’t care what my legs were doing, I would not roll anywhere again.  There’s nothing wrong with admitting you need help, but for me, the wheelchair was not an option. I would just walk slower.  GBS would not win today.

So I fought my way down to lunch on my crutch.  I needed help getting my fork and knife, and bringing my lunch to the table.  Instead of sitting outside for lunch, like I usually do on a sunny day, I was relegated to sitting inside.  I didn’t t trust myself to walk any further.  The patients at the table were great, so I tried to focus on what I did accomplish today, but I was clearly bummed.  I was losing sensation in my legs as we sat at the table eating, and I was getting worried.  Couldn’t feel my feet.  Legs were pretty numb.  I was starting to feel “normal” again, and then WHAM!  I felt like the guy I just knocked out in Wii Boxing on Wednesday.  I was down for the count.

I finished up the day with a lackluster performance in Rec Therapy.  I’ve been working on my balance on the BOSU (It’s a dome shaped object used on both sides for balance), and because of my lack of strength, I couldn’t even stand on the BOSU.  So we did lunges over the Bosu.  Instead of lunging over, and pulling myself up on the other side, I had no core strength to pull my other leg across.  I was stuck.  Not just physically, but emotionally.  Again.  Damn.  Why is this happening?  So I kicked the Bosu, and we called it a day.  I packed up my things from therapy, feeling pretty dejected, and headed to get my ride outside.  How do I shake this off?

I went to bed early, and tried to put the day behind me.  I woke up on Saturday with the sun shining so brightly through my windows, and I realized that I woke up.   I mean, obviously, I was awake.  But, who knows how many more of these I’ll get, right?  I got a chance to do this over again, and find some good in this funk.  I was still pretty weak, so I rested much of the weekend.   Did some reading.  Wrote more notes.  Updated my journal.  Watched a few movies.  Black Swan?  Not worth the hype.  Limitless?  Definitely worth the 2 hours.  Adjustment Bureau- Boring, and I love me some Matt Damon.  Please send recommendations.  I’ve been updating my Netflix queue and would love some suggestions.

After much encouragement, I’ve created and launched this blog where I will post updates on my GBS journey.  Click “Follow” at the top of the page to follow my progress.  You can comment on my posts, read old posts, and see all of my pictures that I’ve been taking.

Thank you for bearing with me.   Writing about my progress is very scary.  I’m very vulnerable as a result of my candor.  So, I hope you know how much it means to me that you take the time to read my words.  This is not a typical update from me, but as I said in the beginning, I want to be honest.  I want people that are struggling with GBS, or with their own battle, to know that there will be ups and downs; but every day, you get a chance to start anew.  I promise to find the good, the message, the meaning in all of this.  It’s just getting lost in all of the muck at the moment.  Today was a much better day, and I’ll share with you on my blog tomorrow!

As my friends and family, I’m hopeful that you’ll continue to cheer me on.  For those that don’t know me and want to know that they are not alone, I hope they’ll find a kindred spirit in my blog.  Please share with anyone that you feel would benefit from my writing.

Thank you for joining me on this journey.

Much Love,

Suz

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