Atypical Multiple Sclerosis

It is funny that after a few years, okay 5 or more, with MS you get used to the pace of  life. For me life has slowed down, dramatically.  I am on a completely different schedule than I was before; completely different than most ‘healthy people’ I would guess.  Just when I think, hey I am doing alright, life isn’t quite as different as I thought-bang it happens.  You are made acutely aware of just how much MS has impacted your life.

I’ll give you a ‘for instance’.  I feel better, I have more energy, I walk better, I have more endurance, etc.  You know, you’re living it.  I get an invitation to a 40th birthday party, a surprise birthday bash, for a friend who lives in a nearby state, a couple of hour drive. Immediately I think, ‘yes, I will attend.’  Actually, it was more like YIPEE!  I’ll go.  I can’t wait to go out again.  After all the party was at a rented hall with a live band for an all night party.  Just the type of party I lived for before MS.

I knew better than to drive down just in time for the party.  I mean I still have MS,  I need some rest time before the big event.  So, I drove with hubby in the afternoon.  We checked into a nearby hotel and I promptly took a nap.  I wanted to conserve as much energy  as I could.  Right about now, I realized that I wasn’t quite as good as I thought.  A two hour drive for a 40th birthday bash really shouldn’t be an all day event.  Most people would hop in their car two and half hours before the party.  I planned the trip, the drive, the hotel.

Ok, well I just need to plan a bit more now.  No big deal.  Right.  Maybe if I keep writing it and you keep reading it, it will be true.  Life does not work that way.

So evening sets and we head off to the bash–7:30pm.  here is where I am a bit upset.  I figured the birthday boy would be arriving 7:45 or 8pm the latest.  No, no, no.  The person throwing the party told everyone to be there an hour early. And the band was supposed to start playing at 9pm.  I just lost an hour and half.  There is a big difference between me at 7:30pm and me at 9pm.  At 7:30pm I can talk, laugh, maybe even slow dance.  At 9pm I look like I have had a few too many suds and shooters.  Standing around for an hour or so, I began to wonder how everyone else would fair.  I mean could all of these other people stay up so late. No that is not a joke.  I forget that I am not the norm, I am not the poster child for late 30’s and early 40’s people.

Once the yelling of surprise was over and the band began playing I was amazed.  Amazed that most people had energy to dance.  And dance. And dance.  And dance.  They walked around with their drinks, they talked-sometimes having multiple conversations at once, they danced.  At 10:30pm my husband escorted (read: held onto me so I didn’t stumble into a wall or a person) from the party to our car and into our hotel room.

When we left it seemed the party was only beginning to wind up.  Like the best was yet to be.  Wait, let me say that again.  LIKE THE BEST WAS YET TO BE after 10:30pm.  WOW!

Needless to say my head it the pillow and I was asleep.  We drove home the next day. I was silent.  How could I be so accustomed to MS that I thought I was going to be able to not just survive a late night party, but participate.

My life has slowed down.  I am on a different schedule than most people.  But I like it that way.  And that is good because I didn’t choose it and I can’t change it.  Maybe I can’t dance at 9pm but life is more than dancing.

I woke up today.  I have twenty-four hours that I did not have before.  Those hours may be riddled with atypical chronic progressive MS, but these are my brand new hours. Each day I feel myself gaining strength, not physically, mentally.  My MS deteriorates my physical body more than my mental body.

For me, living every day, well really living HAPPILY, every day requires a strong mental fortitude that sees only right now.  Worrying about future events that might not even happen, lamenting what might have been expends precious energy in a disease that is all about conserving energy.

The future hasn’t happened so who knows what will be.  My energy is better used on the things, events, people here, now.  After all I am sure there will be twenty or more disease modifying drugs(dmd)  for Relapsing Remitting MS before Progressive MS even sees one FDA approved dmd.  Now don’t go yelling at me about minimizing RRMS.  I am not.  It must be very difficult to feel good one day, not the next then feel better weeks later again.  AND to not know when that dip will occur.

I mean the docs and researchers must see the highs and low of RRMS as much more important than the continual decline of Progressive MS.  I would love to wake up once, for one moment without pain, dizziness, low energy, bladder problems, etc.  I see other diseases being fought from the worst debilitation to the least.  But good ol’ National MS Society sees RRMS as an easy way to make money. OOPS!  Did I just say that. Yes, I did.

Ok, back to the moment.  I have these brand new hours and I don’t want to spend them lamenting, and complaining.  Life is too short; I want to be happy. See how easy it is to fall back into discouragement.  Alas, I am becoming happy again.  A cure can’t make me happy, a dmd can’t make me happy.  It can make anyone happy.  Happiness comes from within.  So I was dealt these cards.  I simply need to play the best hand I can.  End of the story.

Playing the best hand you can is easy to say and very hard to do.  Waking each day thankful for the new hours to spend with family, or friends, or quietly enjoying peace is my game plan.  From my window I am able to see trees, plants, birds, insects, sky, clouds, so many wonderful sights.  I love to be outside, in the woods, near a body of water, in the middle of a freshly cut lawn breathing in those smells and taking in those sights.

The things we can’t replicate like sun, breeze, flowers contain intrinsic value and these bring us most happiness.  From my living room window I see my weeping cherry tree.  The pale pink blossoms cascading down each branch was consumed with bees bustling to collect pollen- bee gold dust.  Sitting under the tree I heard the bees’ buzzing-a natural concerto- while watching the bees weigh themselves down with pollen.  Once a bee was so heavy with pollen it waffled away from the weeping cherry tree to some unknown hive.  Because of MS I was able to witness that beautiful event.  I was even able to photograph some of it.

If I didn’t have MS or if I had RRMS I would surely be working and not available in the middle of the day to witness and capture the hardworking bees.  I guess the moral of the story is to be happy where you are because all around you are things about which to be happy.  Atypical Chronic Progressive MS is the proverbial double edged sword.

As I recently stated I have been in a bit of a funk lately.  Living with atypical chronic progressive MS is difficult.  For so many years I maintained a positive attitude.  Not that I don’t have a positive attitude now.  I am positive that MS is a 24/7 365 day struggle.  Some would say that isn’t a happy attitude.  Ok, I’ll give you that.  But it is a realistic attitude.

Realistically, people hit emotional walls every day.  No big epiphany there.  Some say you can endure anything for a brief period of time.  I will agree with that.  Brief, is the operative word. My brief period of time is different than another.  And living with a chronic progressive disease in which no real disease modifying drug is very helpful and no cure available can be disheartening.

But, you’ll say, you just posted about how much the baclofen pump is helping.  Yes. The baclofen pump does not impede the progression of the disease; it only helps mitigate the SYMPTOMS.  And the cytoxan(used for inhibiting disease progression) is hard on the body and for me short lived.  I completed the cytoxan 1 year and three months ago.  A typical person gets three to five years before progression rears its ugly head.  Being atypical I didn’t even get two years.

See you fight and you fight and still you only move inches.  It is finding happiness in those inches or in spite of only inches  is the key.  If you can endure anything for brief periods of time ( I know I can) then I guess my key is in keeping my time to moments.  Keeping my head in the moment, being happy where I am, knowing it could be worse, and enjoying all that is around me by living today.

After all what is the alternative if not living.  Remembering those things that made me happy-family, friends, hobbies, connections to people.  These really are the enduring nourishments for a life fulfilled.  Multiple Sclerosis can leave people isolated, cut off from former lives and from the larger population.  When you can’t work, can’t lead a “normal” life, you need to work harder to connect with people.  For it is in those connections that we truly live, that we truly find happiness.

This past fall I was feeling like I was beating MS, or that the effects of MS were minimal.  So I went to a 40th birthday party for a friend.  It was a private event held in the evening with a live band and about 100 people. It began at 8pm and went long after I left.  People actually have energy and ALOT of it past 8pm.  I forgot that.  I watched people dancing at 9pm and thought, “Wow, I remember those days.”  I stood with my cement pillar legs firmly anchored to the ground watching people 10-15 years older than I dance and dance and dance.  My mind raced with the songs, choreographing the moves I would have performed had it not been for MS.

That night was the beginning of my unhappiness for I realized that night no matter how good I felt, I would never feel like I did before MS.  I know this feeling is temporary; my mind is strong and my will, stronger.  I live today, I live for today.

So, today I thought I would give a quick( if you’ve read my posts you know quick isn’t really in my vocabulary. I tend to go on and on) update regarding my baclofen pump.  I’ve had my pump now for 1 year and 9 months.  YIPEE!  It still works great and I am still loving it.

Yes, I still feel spasms sometimes.  But they are weaker than before the pump.  Everything has to be judged according to a before time.  For instance in my family we refer the time before ms as “PMS” -preMS.  Yes, I am aware of the typical meaning behind PMS.  But really it works here too because since having MS I feel bloated and irritable. And the time after MS as well “AMS”.  That works to because well I ams filled with MS.  Okay, bad joke but it is important.

SO, I feel spasms but not to the extent I did Pre-pump.  When they get bad or the stiffness in the legs return we (docs and I ) crank it up the pump.  For me, it really is the best thing since sliced bread.  If for nothing else than for some relief from the cloudy, drunken, exhausting side-effects of Baclofen Pills taken orally.

I have had some interesting incidents along the way.  The MRIs are always interesting. My visits to the MRI centers are always a crap shoot.  Some of the personnel at the center are leery, afraid, hesitant to perform the tests.  They must be afraid something bad will happen to the pump.  Apparently, you have 24 hours to get the pump checked after and MRI. Well, at the center I go they are unwilling to perform the MRI unless I have an appointment to get my pump checked within 4 hours.  This becomes a bit of a drag when the MS Docs are telling me one thing and the MRI center is telling me another.  I mean really!  I have enough on plate to deal with, they can’t find common ground or at least a common time frame.

Ok, so once I had a problem during an MRI.  My pump felt very hot, it was moving and fluttering.  That was a very weird and strange feeling.  The technician immediately stopped the test, got the MRI doc and he ended the MRI that day.  The technician looked frightened, she couldn’t escort me out of the building fast enough.  But that was only once AND I had both brain and spinal MRI. I must have been in the tunnel for close to 90 minutes.  Later, I found out that it isn’t so much where they scan as it is the time in the tunnel that affects the pump.  Good stuff to know.  Split up the MRI scans even it means two visits.  The technicians will be happy and so will you.

Secondly, I lost weight. Seems like a good thing, positive, happy, healthy.  Well, it is overall. But if you have a pump implanted than  weight loss can effect the pump. It doesn’t effect the running or the function of the pump.  But, the pocket in which the pump is placed becomes loose with weight loss and the pump may move, tilt.  If too much weight is lost and the pocket becomes very loose than the pump has the potential to spin which makes it impossible to refill.  I am not sure what happens at that point-I know won’t be an easy fix.  SO, the  big lesson there is lose the weight before the pump or keep weight you have until pump replacement time.

Other than those small things the pump keeps pumping and I keep walking on my own two legs in a less cloudy haze.  All in all I am happy and continue to be happy with the pump.  A real positive in AMS era.  I feel AMS good not PMS good.  And you thought good was good after all a rose by any other name….