Multiple Sclerosis is a F…king Thief

How do you know?

I bet you didn’t count the dots above and assume I mean that other word, F..king.  But I’m talking about F…king as in freaking as in being freaky weird.

But multiple sclerosis is very sucky too so F..king does apply as well.

Those with chronic illness regularly talk about the things that said illness steals from them.  With MS, those thefts vary greatly from patient to patient.

The ability to walk without assistive devices.

The ability to see clearly or speak easily.

The ability to live more than a few minutes without the utmost level of pain.

The ability to control your body as you should be able to control your body.

There are, of course, many, many more ways as well.

In this blog I would like to focus on a few less obvious examples.

The ability to do simple math is one.  Since math was never my strong suit the few skills I have, I need.  So when people don’t understand what I mean by cognitive difficulties and at the same time don’t understand why I may just as easily leave a 6% tip or a 60% tip on a lunch tab it’s because of the theft of my math skills.

I’m neither cheap nor generous- I’m just completely confused.

Recently MS has robbed me of my ability to spend quality time with children.

For a long time I had the pleasure of hanging out with the absolutely cutest neighbor ever!  This adorable 9-month-old would spend every Monday morning with me and I looked forward to his visits.  But about only a year later he was almost 2.

Who could have predicted that?

21 months old (and yes, I just used a calculator to look that up,) meant he was now a bundle of energy I couldn’t keep up with.  Never mind the quickly getting up off the floor thing when he was headed towards something he shouldn’t be headed too.

(Why the hell do kids insist on playing on the floor?  Why can’t toddlers sit calmly at a table and quietly do word search puzzles like the many little old ladies I know, aka me.)

It is f..king  f…king sucky.

Never a mother but always the coolest of cool aunts, MS has affected that as well.  On a recent visit with my 2 great nephews, fatigue had my patience at an all-time low.  Always a master at diffusing child arguments I let the 2 little guys battle it out themselves over who got to carry the empty pizza box to the trash and who got to pour their cereal into their bowl first. I love, love my nephews and love, love spending time with them but when did I also start loving it when they went home? 

I know those who spend time with kids will say that happens to all of us, kids are tough, yada, yada.   But I hit the limit 5 minutes in!  That must be the fault of multiple sclerosis.

After experiencing flares and flu like symptoms that deeply hampered work trips and family vacations, MS has robbed me of the experience of flying stress free.  It’s just not worth the trip if the airport and/or the plane make me feel miserable during and for days afterwards.

Another thing I know MS has stolen is the ability to know.  I just bought new jeans.  I bought them from the same company that sold the jeans I was currently comfortably wearing. I bought the exact same label and size.  And when they arrived I tried them on and they fit perfectly.

Except they didn’t.

I tried to know if they fit and even though I tried I didn’t know that they didn’t.  (If you have MS then you may understand what I mean.)

Turns out I wore them the next day and they were over 3 inches too long.  How does that happen? And how did I not know it when I tried them on?  Which leads to another chronic illness robbery, money.

Illness is f…king expensive.

And not just with expensive copays, expensive meds, expensive health products, and expensive adaptations.  It becomes expensive when you have to correct your mistakes. Because I knew that the jeans were fine when they weren’t fine, and I threw the paper work away, I had to shell out $30 to get the sob’s hemmed or I wasted the $60 I spent on them in the first place.  And money mistakes like that are not an isolated incident.

The missing ability to know is what so often frustrates and scares me.  You may not be aware of this but here in Massachusetts there is a man with multiple sclerosis on trial for two counts of motor vehicle homicide.  His defense is that while driving he had an MS flare that caused the crash that lead to these two deaths and to injuries to seven other people.

First and foremost, please allow me to offer my deepest sympathies to the families of those killed and to those who were injured.  These people were simply having lunch one day when a car came slamming into a restaurant and their lives and the lives of their families and friends were horribly changed forever.  It’s unfathomable, and I hope they get the appropriate justice they deserve.

But what makes me ponder is what is that justice?  Did the defendant know that MS has affected his driving?

I still drive but have some trouble driving in traffic congested areas, specifically cities.  I refuse to drive there as my brain is slow to process all that is coming at me at high speeds and if I’m not familiar with the area the last minute decision of when to turn where and what lane to be in at the time, all while cars behind me are honking as they have lost patience with me, causes me to lose confidence behind the wheel.

I know this and so don’t drive there.  But are there other driving issues that I have that I’m not aware of?  If I’m driving and I have a flare it’s unlikely that I will know it’s coming; will it impact my driving?

I do make allowances to drive safely but to give up driving completely will so alter my life that basic necessities will be stolen as well.  No longer will I be able to regularly care for myself.  If I felt it was no longer safe for people on the road with me for me to be driving I would stop driving.  Should I make such a drastic decision without knowing if I need to?

And I’m not saying this is the situation with this particular defendant.  I don’t know the complexities of the criminal case. Nor do I know him or how his MS affects him. It’s just that this trial has made me think.  I can only hope that the judge and jury know what justice should look like here.

Basically, I’m hoping that they haven’t been robbed of their ability to know.

 

Update  The defendant in the case was found guilty of negligence.  Not knowing the specifics, I can’t tell you what the exact negligence is.   I worry this is a bigger issue than my MS brain can sort out.  People without chronic illness say we shouldn’t just give in to our illness.  Yet, does this verdict mean we should further restrict our daily life in case MS does something we can’t really know it will do a head of time?

I just don’t know…..