Wednesday, May 26, 2010

World Ms Day 2010

Today I joined World MS Day as well as E-MS Advocacy Day, North Carolina (on Facebook). By joining these groups I have committed to raise awareness for Multiple Sclerosis through my blog, Facebook, & Twitter (you can follow me at #joahaskell). I have also committed to sending emails to NC officials to raise awareness and to share with them the concerns that people with MS have about employment. When you have MS there are plenty of things to consider.

Over 2,000,000 people in the world are currently living with Multiple Sclerosis, 400,000 Americans live with MS and 10,000 North Carolinians live with MS. According to a recent survey of NC activists, 71.6% of people say that MS has mainly impacted their employment. According to British Journal of Occupational Therapy 71.3% of patients with progressive MS and 65.8% of patients with relapsing remitting MS are unemployed. (I have relapsing remitting MS). They also found that physical barriers are the reason for giving up work for 44.2% of people living with MS and that Fatigue is the most common factor associated with giving up work for people living with MS.

Ok so those are the is my reality. I am currently employed by the Haskell family. I am on call 24/7. I am a teacher, nurse (injections and all), chef and short order cook, community organizer (there are 5 of us in this active community along with canine who also has a schedule to keep), maid, seamstress, painter, chauffeur and gardener. In my "spare time" I volunteer in both my older daughters classrooms with centers and character education lessons. I also volunteer as the current VP of Hospitality for the HSES PTA. All of this happens within a 1-2 mile radius of my home. My youngest daughter will be entering kindergarten in July. I am thinking of taking the summer to get things in order and then I may start looking for a career outside the home.

Unlike 3 years ago when I was working from home 20 hours a week as a research consultant for an executive recruiting firm or 10 years ago when I was the director of the professional search division of a staffing firm or even 15 years ago when I was managing an office as a recruiter for professional services, I now have MS. Since I was diagnosed in Dec/Jan I have had at least 3 separate relapses where for at least a week and up to 3 weeks I have been down and out. Physically fatigued and aching with pain...not a dull pain (that is every day) I am talking about serious debilitating pain.

How does one go about finding a job, never mind a career when they have a disease that is completely unpredictable with chronic pain? You can't really go into an interview and divulge your complete medical history, nor can you really "hide" the fact that you have this disease. Ms is tricky. It can hide and lay dormant in some. In others it rears it's ugly head daily. For most people we are just waiting for that other shoe to drop.

For me, I feel like this disease has the ability to take away so much from me...if I let it. I was talking with my friend Diane this morning. After telling her I was on day three if feeling like I was out of the dark tunnel I told her that I am afraid to feel good. I am afraid to get my hopes up because I could turn around and in an hour need to be in bed. She encouraged me by telling me that I could not live that way. I had to hold onto the good days and not let the thought of a bad day creep in. (Diane's husband has a rare form of cancer and has just been given the thumbs up from his last follow up. She reminds me that his cancer could come back at anytime, but if she lives with that thought constantly in the back of her mind she loses what she has today). My friend Holly lost her dad to cancer (it will be 2 years is August). Through out the entire ordeal she reminded herself and all of us supporting her to not let what could happen tomorrow ruin today. And of course I cannot forget my brother's quote to me right after being diagnosed "worrying is preparing to fail".

All of this encouragement and support along with my faith that God is in control helps me to not worry or dwell. Life is too short to worry about what might be, instead of knowing what today brings. So if I get a "job" or start up my career after Jackie goes to school full time great. If not, I know that there are great things ahead of me regardless. We only get one life...with or without MS we need to make the best of it.

One of my favorite quotes is by Henry David Thoreau " Go confidently in the direction of your dreams. LIVE the life you have imagined."

Sunday, May 16, 2010

The wisdom of Dory

It's been another one of those weeks...Just when I think I have a handle on this MS thing WHAM!  This week I felt like I was thrown into the water, not sure if I would sink or swim.   Well that's not true...for a while there I was sure I was going to sink.  The waves came out of nowhere.  They crashed on top of me and I could not get my head above water.  I was treading with all my might and kept sinking under. 

The first wave came on Tuesday night.  I was out with my girls having dinner.  I started to have the burning in my back and I was praying it would just stay there and not go into a full blown episode.  After dinner we had to get some things for the next day...milk, bread...the essentials.  As we are in the produce section out of nowhere the MS hug grabbed me like the tentacles of an octopus.  Wrapping itself around my back and chest and squeezing the breath right out of me.  The pressure, the pain, both felt like a heart attack (or what I envision a heart attack to be, since I have never had one). 

Envision Super Wal-Mart and me hunched over my cart with three little girls trying to rub my back as I gasp for breath.  Good Lord something is so wrong with this picture.  I could not just leave it there, we needed the food for the next day.  So in line the girls are trying to make me laugh, rubbing my back and telling me that it will be ok.  We make it back to the car and the flood gates open. Some tears are for the pain and some are for the sweetness of the girls giving instead of taking.  Some are in frustration for the helplessness I feel and some are in anger that my children have to witness this episode.  Most are for this feeling of drowning that I have.

The pain and exhaustion  have continued up to and including today.  Although it does seem to be lessening.  It is like being under water, looking up and seeing sun shine through.  There is light now...I am not quite able to get my head above it yet...but the hope of being able to do so is there. 

So today I will take my wisdom from Dory (you know that super, smart fish from Finding Nemo).  Here are her words of wisdom:
Dory: Hey there, Mr. Grumpy Gills. When life gets you down do you wanna know what you've gotta do? 

Marlin: No I don't wanna know.
Dory: [singing] Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.

Marlin: Dory, no singing.
Dory: [continuing] Ha, ha, ha, ha, ho. I love to swim. When you want to swim you want to swim.

Marlin: Now I'm stuck with that song... Now it's in my head.
Dory: Sorry.

Unlike Marlin, I am glad to have Dory in my head to remind me that if I just keep swimming I will make it through the rough waters.  I will find the light above the waves.  Because "when you want to swim, you want to swim" and rough waters are surely not going to hold you under for long.  ><>