“I Hate This Thing…”

This thing is MS, Multiple Sclerosis. I realize now I have had it all my life, but wasn’t “officially” diagnosed until 2005. I am now 56. I was 49 when diagnosed. Not complaining though, many get it younger, many get it a lot worse, and many do not have the support I have from family and friends. But, I still hate this thing called MS.
It was a long and arduous process finally getting the diagnosis.

It all started driving to work one morning in April of 2004 I noticed a spot on my right eye being blocked. I thought it was a piece of dust, a piece of dirt, remnants of the sand man since it was still early morning.

This was the start of my MS journey, “I Hate This Thing!”

The doctors’ visits started right away. First a general eye doctor, then specialist after specialist. Test after test. MRI’s, Hearing, Eye, Spinal Tap, etc. Nothing conclusive they all said. Do you have diabetes they would ask, ever have a heart attack, a stroke? Then I told them I was in the hospital in February of 2004 for Deep Vein Thrombosis and Pulmonary Embolisms. The amount of tests I went through to find out why I had them was daunting. Finally a diagnosis for the DVT’s and PE’s, birth control pills and being overweight. Could all that have caused the blind spot? We don’t know they told me.

A series of more Incidents over the next few months, numbness in my both of my hands and entire right side, walking difficulty, uneven balance on my right side, vertigo, depression and could no longer function “normally”.

Finally a diagnosis. My Doctor who gave me the news was compassionate, understanding of my fears and most of all informative.

Every time a new symptom came up I cried. I tried to make light of it by joking, but it actually made matters worse. People thought I was okay because I joked about my situation.

At work I always tried to smile. The pain, incontinence, depression, etc. were always present. Work kept me feeling like I was still part of my old life although I found it harder and harder to do my job. I was able to work some from home until they could no longer accommodate my position working from home.

Going out with friends became increasingly difficult. Where were we going? Could I drive there? Were they handicap ready? Could I get to the bathroom easily? Quickly if needed. Would I make a mess of things eating with my left hand versus my right that was the one I used all my life? Too much to consider for just a few hours out.

Friends and families homes were no easier to navigate. Fear of not being able to get in, manage stairs, bathrooms and fear of falling paralyzed me to stay home.

I am not a follower, I like to lead. I cannot accept help easily, I like my independence like I like breathing. No contest I was not able to cope.

I thought if I gave $5.00 coffee shop gift cards when somebody helped me, I would feel like I was still okay, no MS. But that made others happier than me as I was just reminded I did need help.

For the first few years when I fell down in my home I could pull myself up. The last couple the police department, fire department and ambulance squad became my saviors’. More and more I had mobility problems. They became almost too familiar with my address and issues.

“I Hate This Thing!”

I hate the numbness in both hands, the loss of use of my right hand, using a cane and now a walker, not feeling my right side, not being able to handle stairs alone (up or down) buzzing in my ears, having problems speaking/swallowing at times, the bladder and bowel issues, the depression, not being able to write, no longer being able to drive, no longer going into the office and having to be dependent on others rather than being furiously independent. And the list of medications!

Still bottom line all these “things” are my life now, living with this thing I hate… MS.

MS became who I was what I thought people saw me as and more than anything wore away at my faith in God.
Luckily my faith was renewed; my Angels took shape in my family, friends, my diagnosing Doctor, his Physician’s Assistant and my Therapist.

Right. My Doctors that were instrumental in my new diagnosis. Without them being supportive and helpful in that first year of my diagnosis who knows where I would be.

Then I had family, friends and co-workers who wanted to learn about MS and what was happening to me. I can cope now and can laugh more. I still have moments of when I cry like crazy, but I have accepted my life is so very different than it was years ago. It changes daily. Will never be the same. The difference is now I have hope and go forward instead of back to when things were “normal”.

Sounds like I was lucky. And I was in many ways. Still, “I Hate This Thing!” MS.