MS & Grieving – 8/18

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Multiple Sclerosis is a debilitating disease of the central nervous system.  More than 2.3 million people worldwide and roughly 400,000 in the US are affected by MS. The Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases.  Because symptoms can be completely invisible the prevalence of MS in the U.S. can only be estimated.  The Society continues to advocate for the establishment of a national registry that will track the number of people living with MS.  They have also made a commitment to re-evaluate the current prevalence estimate and investigate the process by which an updated estimate can be identified.

The signs and symptoms of each individual person are totally different.  When I first began to notice something was wrong I was having vision, heat problems, urinating and fatigue troubles.  I wondered to myself what was going on?  There didn’t seem to be any relationship between the symptoms.  Who would ever think there was one disease that could affect your eyes, your bladder, make you feel more tired and was starting to make you dislike heat?  I know I didn’t know of any.

I don’t remember where but I’d heard the words multiple sclerosis somewhere.  It wasn’t until I went to the public library and got a book on MS that it all started to make sense.   The only thing I knew about multiple sclerosis was this.  In 1966 I was 8 years old.  I can  remember a public service announcement on TV for MS.  When the PSA was over it ended with the tagline, “multiple sclerosis…. the crippler of young adults.”  I’m not sure if that tagline would work today with all our political correctness but it did back in the mid 60’s.  I also remember there were people sitting in wheelchairs laughing and enjoying themselves in the PSA.

The rate of progression for MS is unpredictable as is the degree of disability for each person it affects.  I was told once by a neurologist that how you are physically doing in 5 years from your diagnosis is how you’ll be for the rest of your life.  My 5 year date was 1996.  In’96 I was still upright, walking, exercising regularly and having a good time!  Something must have happened between 1996 and today, though.  I’m now considered to have PPMS, nothing below my waist works and my fatigue is as bad as ever.  The only good news is that Multiple Sclerosis won’t kill you but it sure makes life more challenging!

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Grief over any kind of loss is a normal and healthy process. People with MS grieve over changes caused by the disease.  In the beginning with a new diagnosis that alters their life and their self-image.  Grieving can occur again whenever the disease causes a significant loss or change.  Examples would be the ability to work, to walk or to engage in certain leisure activities.

When you get MS you have to learn how to accept all the changes that come into one’s life and move forward.  With all the many symptoms and changes that MS can cause people with the disease can expect the grieving process to ebb and flow over time.  In the beginning I didn’t know or understand this.

I would think I had accepted my MS and then something else would happen to me.  An example would be going from my cane to a walker and finally losing my walking and going full time to my scooters.  Losing my bladder, bowels and losing my ability to drive or for that matter even get in my van.  Each one set off the grieving process again!  I’d feel terrible all over again.  Then I’d get down on myself and think what was wrong with me?  Each change in the disease can set off the grieving process.

Although MS is not a death sentence it can still be an extremely overwhelming diagnosis and therefore contribute to a sense of grief.  The five stages of grief are denial, anger, bargaining, depression and finally acceptance.  Although the grief stages were initially for the death of a loved one it can also be applied to the loss of anything.  Not everyone grieves in the same way and some stages may not be used.  Below I explain the 5 stages of grief and my thoughts.

Denial – I was diagnosed with MS in 1991.  I didn’t have too many denial thoughts that I remember.  I saw my MRI and the little white spots which were lesions on my brain.  I’d already had vision troubles in 1990 and could trace heat symptoms back to at least 1979.  Then my  first exacerbation was in 1992 so I knew I had MS.  Luckily, I had my commercial carpet cleaning business going with employees so I just kept plugging away.  I didn’t look sick so my life went on as usual.

Anger – I wasn’t too angry after my diagnosis either because my life was just the same.  I was single, no children and lived by myself.  I had my business so nothing was too different for me.  I did have two questions though… what would I do for a living if I got really sick and what woman would marry me with MS if I ever decided to get married.

Bargaining – One question I have never ever asked myself was “why me?”  Even today in 2018 with my MS progressing along I’ve never asked myself that question.  I now have people I knew in high school who are passing away at age 60.  When you reach 60 alot of things can start happening.  I look at it this way.  I have MS and a reduced life but at least “I’m on the north side of dirt.”  Stuff happens… people get diagnosed everyday with MS.  Anything can happen so they need to be ready.  The main thing is to continue on with your life as best as you can.

Depression –  I’ve always been a positive person.  In my first 20 years of MS I often said I was down but not depressed.  I think when I lost my legs in 2011 I started to have some depression problems.  When I lost control of my bowels in 2016 I got a little more negative.  My neurologist has me on an anti-depressant now.  I’m a little reclusive because of my bowel troubles but I’ll get through it.

Acceptance – I have accepted my MS many times.  The first time I accepted my MS was in the mid to late 90’s when my MS seemed to be more stable.  Now in 2018 I really feel I’ve accepted my MS.  I don’t think there is anything else that MS can do to me!  This past week I bought a used van that is handicap accessible.  The van has a ramp with a push button opener so I can load myself.  Life is GOOD!

Scooterjon