MS & the FFT ....

I learned about FFT when I listened to a podcast talking with Dr. Brene Brown PH.D.  FFT actually stands for F*#@ing First Time however I will refer to it as the "famous first time."

We each have experience famous first time with something. Maybe:

• Riding a bike

• Driving

• Having a child

My “Famous First Time” that will stay with me the forever will be my diagnosis of MS.  Little did I realize that MS was a forever condition. I didn't have any information, knowledge or understanding about MS. After I

began to learn more, I had questions:

• What does having MS mean for my life?

• Why did I get MS (did I do something wrong?)?

• Will I need to stop doing things I have loved? (reading, riding my bike, "nerding")   

The concept of “taking back my power” was discussed by Dr, Brown during the podcast. I realized that MS had power over me. I overrode choices that I wanted to make. For example I couldn't ride my bike since I had lost my balance. Typing this is difficult since my left had is numb and i hit the wrong keys (be aware if I type a foul language word... its because of my left hand neuropathy & my inability to type on the right key consistently. However I leaned from the podcast with Dr. Brown I was giving MS power by trying to hide from it.  If I said the word multiple sclerosis and accepted that I needed to change my life, who I used to be was gone, then I would taking a small step to making my power mine again ( I was going to get back some of my power from that 💩). Calling “out” MS would help me regain my ‘power”.  It helped….kind of…

I was able to gain back power by:

• Talk to others with MS (support groups)

• Learning about MS through reputable sources such as:

MS Views and Views

National Multiple Sclerosis Society

Neurologist 

• Advocating for myself 

           How I wanted my treatment

Who and where I wanted to receive treatment from

 

Martin Luther King shared that: power is the ability to affect change and achieve purpose.

The FFT isn’t easy. Affecting change and achieving purpose involved several steps:

• Reality check of MS

• Perspective of the new me with MS

• Expectations about who I was now and who I used to be (maybe I should have said "realistic expectations").

My reality check was that I had MS. There was not a cure for MS.  I didn’t know what MS would do to me...tomorrow.... in 5 years or in10 years. I considered the "Shawshank Redemption", I needed to get busy living or get busy dying. 

Perspective was learning the normalization of my new life with MS. I had “normalized"  once before in the past. That encountered in grade school (and partially through Jr. High). I had Myopia, also called nearsightedness.  I couldn’t clearly see beyond 5-10 ft ahead. I couldn't see what my teacher wrote on the blackboard (yes I am “older” and blackboards were still used).  I didn’t know I was nearsighted. No one had ever discovered or told me that I may have a problem with my vision. It wasn’t realized by my parents or teachers.  I thought my vision was the same as other kids.  I learned to feel normal with myopia until it I was finally diagnosed when I was 14. I received prescriptive contact lenses.  I learned that I had ”normalized something that wasn't "normal”.  Other people actually could “see”. They didn't need glasses or contact lenses. What I thought was normal vision was actually nearly blindness, that is how bad my vision was. "W O W"! 

How would normalize MS? I was out of practice. I received my diagnosis at 42. How would I achieve what I had done when I was a grade schooler?  What would normalizing MS that look like?  I couldn't get a pair of lenses and make everything ok. Could I normalize MS?  What I have since learned is that MS isn’t the same for everyone and it isn’t the same treatment for each person. 

In regards to expectations, is there anything other than “expect the unexpected”?  MS, as I mentioned before, is different for everyone. The only thing that is the same for each person is the experience of the “FFT” of diagnosis of MS.  A funny thing with MS, you have the experience of going through the FFT over and over again.  For example, for myself, I went through falling:

I also had the opportunity to become depressed, be fired from a job, lose my speed of cognition, and oh yeah, TYPE. Someone smart once said that expectations are resentments waiting to happen.  For myself, I consider that expectations are disappointments waiting to happen.  I can no longer:

• Run

• Skip

• Ride my bike

I decided that I might be scared of FFT’s BUT I won’t “suck” at every FFT.  Rather I will learn how to do workarounds or hacks to cope with FFT’s.  I have another FFT.  I started this BLOG.  I am learning as I go as MS affects my ability to process information (cog fog). I may have MS, but I choose to get busy living, if I don’t to anything I will be getting busy dying.

Discovery & Reactions

Many would think that as a nurse, I would have been more aware of changes that were happening to me. However, I was a busy woman. I was a mother, caring for two children. I was a wife caring for an amazing husband. Finally, I was an employee working full time on night shift. I didn't have time to notice anything about myself.  As Laura K. stated during a podcast she "pushed through all sorts of things” as did I. If I did notice something I figured I could explain it away. For example, when my left hand was numb, I would self-diagnose that I had carpal tunnel from using the computer too much at work.   

The things that I mentioned above, occurred approximately 15 years prior to diagnosis. During 1 episode in 2007, I experienced one of the three most common symptoms mentioned by Dr. Boster, optic neuritis. I was partially blind in my right eye. Of course, my self-diagnosis kicked in and I attributed this symptom to TMJ. I was experiencing a lot of stress (new job, long move, rural to urban...). I decided that I was grinding my teeth which affected my eye. Now, feel free to judge me. I realize that I made some significant assumptions about myself. Although I did go to the eye doctor. The eye doctor said he didn't see anything wrong. I decided to just "push through it". It resolved about a week later. 

The National Institute of Neurology has posted that the first symptoms of multiple sclerosis include: 

• Vision problems  
• Muscle weakness 
• Tingling and numbness  
• Clumsiness (Such as difficulty with balance when walking) 
• Bladder difficulty 

• 
  

As I neared my diagnosis, I was experiencing nearly all the symptoms listed above. Another podcast that I listened to shared “when your legs or arms work but then they suddenly don't work - It's time to go see a doctor, something isn't right".  I spent so much time making excuses that I prolonged my diagnosis. Roughly 20 years, call me a procrastinator... 

Brooke Eby recently spoke on the podcast MeSsy.  She is 35 now but when she was 29 she started limping. She was not a procrastinator like myself. She went to the doctor. She tried physical therapy, stretching, and working out.  The doctor she went to thought she had pinched a nerve. She went through several tests such as X-rays, cat scans and MRI's.  She was not diagnosed with MS. At 33 she was diagnosed with a different devastating diagnosis, ALS or also known as Lou Gehrig disease. 

 

I was diagnosed with multiple sclerosis in 2012. The symptom that I couldn't make excuses was cognitive impairment (also called COG FOG). As a nurse, it is very, very important to have the highest ability to think. It is very important for a nurse to “First do no Harm”.  I was nearing the point that I could make a mistake and do harm.  I also noticed that:

• I was not a person who cried but I suddenly cried about everything.
• I was a person who had an easy laugh but suddenly was angry
• I had a mixed drink 1-3 times per month but I began drinking 3/4 of a fifth of vodka in 1 night

After seeing several providers, (one told me I needed to undergo surgery to remove my gallbladder) I was finally referred to a neurologist. 

It has been recommended often that a person should take someone to the neurology appointment.  I have to wholeheartedly agree with this advice.  My husband accompanied me to my appointment. He shared things that I was going through that I didn't take into consideration. He could see me clearly. He saw the changes that were happening. The neurologist took my history, did a physical exam and ordered a MRI of my brain (with/without contrast). EVERYTHING (the history, physical & MRI) had abnormalities. The MRI showed approximately 20 scattered lesions.

Kathy, another person who I listened to on a podcast stated "don't ignore your body". I wish I could say that I 100% follow that advice. I acknowledge some things, self monitor others & ignore some. What I have LEARNED is to know my own body. I have learned methods to help my body. I cannot say that I adhere perfectly to all I should do. If I did a report card on myself I would give myself 75-80%.

I have recently begun to listen to the podcast MeSsy with Jamie Lynn-Sigler and Christina Applegate. Jamie stated that when she was first diagnosed with multiple sclerosis, she was overwhelmed, in denial and resisted acceptance of her diagnosis of MS.  Guess what, I was also in that same place. I shared with my daughter, “just treat me the way you've always done, it's not a big deal”. 

Jamie shares in her podcast that she wishes she would have started thinking about her needs sooner. It would have helped her to get to a place of acceptance and finding the right treatment choice for her earlier. In the end or finally, I had to accept that I had multiple sclerosis. It's important to realize that just because you accept that you have multiple sclerosis, it doesn't mean that that you have to enjoy it or like it. 

It has taken me 12 years to be at the place I am now. I can live with the new me. It was a very difficult journey the for 12 years. There were a LOT of potholes on my road. Occasionally I still "trip" on one of the potholes. Some may find peace and a way of life earlier than I did. Even though it has taken me 12 years, I think I finally understand where I am at now. 

“the credit belongs to the man who is actually the arena the, whose face is marred by dust and sweat and blood who strives valiantly;... if he fails at least fails while daring greatly” 

Teddy Roosevelt 

 Those of us with multiple sclerosis and the people that stand with us are in the arena. We are marred by dust and sweat and blood. But we are there and those who are not there should not or cannot comment/voice on the new person we are becoming.

Who am I? I am me. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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