Thursday, December 22, 2016

How MS changed the Holidays

The holidays can be stressful for everyone and especially on those of us with multiple sclerosis. Though you can’t control everything that happens, planning, communication, and awareness go a long way to a wonderful holiday season.

For 16 ½ years, my husband and I have lived on the West coast while our families live in the Midwest. This meant traveling for Christmas. It was worth it to see everyone even though this meant extra stress on our part We would fly into Minneapolis and spend a few days with my husband’s family and then we would drive three hours to Wausau, Wisconsin to visit my family. We have always enjoyed time with our families and felt the time away from “real life“ was worth it.

After my diagnosis in 2011, travel became harder on me. In 2013, we visited the Midwest twice before Christmas and decided to stay in Oakland for the actual holiday. It was tough not seeing everyone but I had to admit cutting out the holiday travel was nice. As my disease progressed, and I found myself in a power wheelchair, travel became even harder. The airports were hard to navigate and communicating with the airline personnel was complicated. I could no longer walk and felt uncomfortable being strapped into the small aisle wheelchair. Not to mention dealing with the tiny airplane bathrooms!

Now we stay here for the holidays. Cutting out the stress of travel, the worry about the weather, and the unpredictability of both have helped me. We’re still figuring out our new Christmas traditions. We have gone out for dinner on Christmas Eve with friends, stayed in and put together puzzles and played games, watched Christmas movies, Skyped with family, and prepared special meals. 

But that’s life, not only with MS, we change and adapt. And we raise our glasses to a healthy, bright, and happy new year!
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Wednesday, December 7, 2016

Life in a Wheelchair

I never really questioned my transition from forearm crutches to a scooter and then to a wheelchair. My legs were failing me and dragging myself around on crutches was exhausting. We rented a scooter and “aha!” I could get around again. When I started relying on the scooter more, I needed more comfort and support and I got a power wheelchair. Easy decision. I was conserving energy. But I didn’t realize this would change my life so much.

First, tons more people remember me than I remember them. It's like a low level of fame. It also becomes your defining characteristic. I’m the redhead in the wheelchair.
  
Second, everyone stares. Once, when I was shopping in my scooter, I heard a woman say, “Oh! That looks fun!” Yeah, lady, it’s just like a go cart zooming around. By the way, walking looks fun too.

If they aren’t staring, they’re purposefully trying to look away, or they have their gaze set on the few feet above my head where I’m sitting, and that’s even worse. Like hello, I’m kind of hard to miss. Or, I’m invisible. I have to shout at people who walk down the street, heads bowed, looking at their phones. I usually just give a “Hey!” and people jump out of my way like I’m on fire. I swear I will run smack dab into someone someday. It’ll be awkward. Or, even worse, I will be hit by a car that was in too much of a hurry to notice me in the crosswalk. Once I made eye-contact with a driver and I could tell he was calculating how fast he needed to go to cut me off – which he did. What the hell, man?! Note to drivers everywhere: look before turning right on red or hanging a left on to a one-way street and respect right-of-way. I might be there waving, always on defense, aware. 

And another thing: Have you ever noticed the cracks, bumps and gaps in the typical sidewalk?  Or that not all crosswalks have a clean cutout? Crossing the street is an adventure in itself.

I don’t want you to feel sorry for me as the poor disabled girl. I don’t want you to look at me as this inspiring hero. I want you to realize I’m just a person, now at about 4 and a half feet tall instead of 5 and a half.
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Saturday, November 26, 2016

Life with MS

Things will never be the same. I know this. After five years, you’d think I’d be more at peace with my diagnosis but it’s hard living with this disease. Being told you suffer from a condition that has no cure and is unpredictable, will change your life as you know it.  There are very few certainties to be found anywhere in any aspect of this disease.

With an MS diagnosis also comes loss. After a bad day, I find myself feeling sorry for myself and grieving the life I once had. On these days it is not hard to work myself up into a frenzy of sobs and tears. How do I incorporate the reality of the disease into my life without letting it dominate my life? Does MS change who I am? Can I be me with MS?

Acceptance is an evolving, continuing, and often repetitive process. Acceptance is not an event or a task that once achieved is completed. There aren’t any set steps to take to get from diagnosis to acceptance. I often find myself forgetting this.

There is a whole world and a whole life beyond multiple sclerosis. We did not choose to have MS, we didn’t do anything wrong to get MS, MS just happened. Now all I need to do is accept it.
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Friday, November 11, 2016

MS-Related Fatigue

One of the most difficult symptoms for those without MS to understand is fatigue. MS-related fatigue is a very common symptom of MS and is different from regular fatigue. It generally occurs daily and can occur in the morning despite a good night's sleep. It can worsen during the day and make it difficult to do normal activities; it can even make you feel like you need to immediately stop what you are doing and lie down. Limbs may feel heavy and hard to use. Cognitive fatigue or “cog fog” may make it difficult to follow a conversation or think of words or numbers. Because it is invisible and unpredictable, it makes it harder for others to understand and appreciate.

MS-Related Fatigue is a pretty new symptom for me. Within the last year, I find myself so unbelievably tired that I can fall asleep by just putting my chin on my chest. Literally nodding off. This level of fatigue goes beyond what I used to think of as “tired” – it’s a full body and mind fog.  A good night’s sleep and a nap during the day can’t remedy it.

Thankfully, there are some options to help manage fatigue. Medication, complementary therapies, rehabilitation and exercise can help manage fatigue. So can conserving energy. Following these tips may help:

1.       Work closely with your MS healthcare providers.
2.      Avoid heat exposure.
3.      Take good care of yourself.
4.      Combine exercise with mindfulness.
5.      Take breaks.
6.      Discuss medication options with your doctor.
7.      Simplify your life.

If you have MS, it’s not your fault that you are tired beyond imagination. Acknowledge your fatigue and recognize that it is a symptom like any other that may be treatable. Rest and take breaks when you need to and don’t feel guilty about doing so. We need to conserve our energy and manage our fatigue. Finally, prioritize listening to your body and taking care of yourself.

MS in Focus Magazine: Fatigue in MS
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Monday, October 24, 2016

My Caregiver

Living with MS often requires a team effort by the caregiver and the person with MS — a partnership that grows and evolves over time. Adam, my husband and caregiver, has been there with me throughout it all – diagnosis and everything before and after. We have learned how to manage MS as a team while also maintaining a healthy and balanced relationship.

MS is extremely variable and unpredictable. People experience attacks and remissions, loss and recovery or partial recovery of abilities. One day I can dress alone, the next day I can’t. Adam has to take and then give back responsibility for tasks all the time.

I want to thank Adam for physically supporting me when my body gives up. When my body seems to be broken, you’re my crutch, my pick-me-up, and my protector. I know you always say you don’t mind supporting me, but I know it’s not always easy so thank you.

All in all, thank you for just loving me and choosing me to be in your life even after all of the pain and upset. Thank you for going out of your way to make life a little bit easier for me.

NMSS Guide for Caregivers
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Monday, October 10, 2016

Living with a Chronic Illness

We who live with a chronic illness know how everything can change in one day. Diagnosis changes everything. At the same time, the change has already been happening for a long time, as we have likely lived with the disease for years before we hear the confirmation of that diagnosis.

I don’t dwell on it but I can’t escape it, either. I can’t escape what the disease has done to my body. I am unable to simply forget that it’s there, and I’m still not comfortable with all of the aspects of living my life with an incurable disease. I’m learning my way through every day, every setback, and every progression.

With progressive illness, the losses just keep mounting, and life becomes a constant exercise in adaptation. I'd never have thought I'd have the capacity to adapt to the level of disability I'm now experiencing. I know that I don’t give myself enough credit for doing as much as I do - MS and all. As Christopher Robin said to Pooh, “Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”
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Thursday, September 22, 2016

Spasticity and MS

One of the most troubling symptoms of my MS is called “spasticity” and it takes many forms. I experience extensor spasms in which my legs extend straight and stiffen at a moment’s notice. These spasms are uncontrollable and can happen so suddenly and intensely that they are capable of forcing a person out of a chair. I experience these spasms, or spasticity, throughout the day and they can range from uncomfortable to extremely painful.  My spasticity became so bad it interfered with my normal movement and gait and eventually took my ability to walk. This is caused by damage to the portion of the brain or spinal cord that controls voluntary movement, which is extensive in my case.

It was really this spasticity and stiffness in my legs that led to my diagnosis. Before I was diagnosed, I broke my ankle and began seeing a physical therapist after getting surgery to fix the ankle. Once I was walking again, my gait was off. I had started swinging my left leg from my hip and not bending my knee while walking. I mentioned this to my PT and he thought this might be neurological and I should get an MRI. He was right.

I also experience a similar although different kind of MS spasticity: a tightening of the muscles in my forearm, which causes the hand and fingers to turn in. I often have a disabled look to my arm and hand. I call it my “dumb” limb. My fingers curl in and I keep my arm close to my body. There has been a change to my arm’s natural resting position. I can no longer write or reliably button a button, and my typing has become more of the hunt and peck variety. It’s a dexterity and fine motor skills issue; my fingers do not move the way I want them to.
While I take medications and do exercises and stretching that can help, I often feel trapped in a body that refuses to cooperate. Once again, the name of the game is ADAPT. That’s what I keep doing.

 


NMSS Controlling Spasticity Brochure
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Thursday, September 8, 2016

“You have to laugh at yourself, because you'd cry your eyes out if you didn't.” ― Emily Saliers

A sense of humor is required to live with MS. If I didn't laugh, I'd cry and I've done far too much crying over MS already. Laughter reminds me of who I was before MS. While a laugh doesn't "fix" anything, it gives me a little break from it.
I learned (and earned) my sense of humor from my family and here they come. My dad, mom, and sister are visiting. They know I can't do as much as I used to. That's okay. There will be laughter.

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Friday, August 19, 2016

The New York Times series on People with Disabilities

The New York Times is doing a series of essays on "People with Disabilities." I'd like to share them on my blog for my readers' reference and my own.
"Becoming Disabled" - August 19. 2016 
"Finding Refuge With the Skin I’m In" - August 24, 2016 


"What Disability Means" - August 25, 2016

A Girlfriend of My Own - June 28, 2017

Brain Injury And The Civil Rights We Don't Think About - August 24, 2017
The Nazis’ First Victims Were the Disabled -  September 13, 2017

The ‘Madman’ Is Back in the Building - Sept. 20, 2017

Finding Myself on the Page - October 4, 2017

You are Special! Now Stop Being Different. - October 12, 2017


How to Really See a Blind Person - February 28, 2018

In My Mother’s Eyes, and Mine - May 9, 2018


We Are the Original Lifehackers  - May 30, 2018
Actually, I’m Not Fine -June 18. 2018

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Thursday, August 4, 2016

Trump Doesn't Speak For Me

A Trump presidency would be disastrous. This isn’t just about politics. He has no respect for women, different ethnicities, different faiths, or even the disabled. I fit into two of those categories and I can’t stand the thought of this man representing our country. I’m sure we’ve all seen the video in which he mocks a disabled reporter. Trump is clearly imitating Kovaleski’s disability — the reporter has arthrogryposis, which visibly limits the functioning of his joints.  Trump’s ugly mockery of Kovaleski shows his immaturity and blunt disrespect of those of us who don’t fit in to his small, cruel America.

Anastasia Somoza, a disability rights advocate, gave a speech in support of Hillary Clinton at the DNC on July 25.  Somoza praised Clinton’s depth of understanding of the challenges facing people with disabilities and how the whole country benefits when it helps them manage those challenges. She also slammed Donald Trump by saying, “Donald Trump has shown us who he really is and I honestly feel bad for anyone with that much hate in their heart,” Somoza told the crowd. “Donald Trump doesn’t see me, he doesn’t hear me and he definitely doesn’t speak for me.”

Having people with disabilities take on Trump is an effective strategy for Secretary Clinton: voters with disabilities are also a potential source of support. We need to make our voices heard and repeat Somoza’s cry that Donald Trump doesn’t speak for us. 
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Saturday, July 16, 2016

MS and the little things

Sometimes when we talk about MS we talk about big things like mobility or treatments. But it’s the little things that seem to affect me the most.

The biggest little thing that irritates me is the loss of my dexterity and fine motor skills. It started with a little curling of the fingers on my left hand. I found my resting position was a balled hand, almost a fist. Every time I noticed this, I would straighten my fingers.

Then my right hand became affected. I found it increasingly difficult to use a computer keyboard or to write. Thankfully, my employer provided me with speech-to-text software that has helped as a work-around.

As my right hand grew increasingly weaker, the realization that I could no longer sign my name was distressing. I also came to find eating difficult with heavy silverware or fatigued hands and arms.

I'm a creative person and, unfortunately, MS is robbing me of my craft hobbies. I can no longer write in a journal or do more intricate bead-work, or even do coloring, which I found soothing before the adult coloring book fad took off. I continue to work at these things when I can but the fatigue and loss of fine motor skills means I can do these activities for only brief periods.

This infuriates me - especially as I can't understand why I can't manage such a simple operation which I managed effortlessly for the first part of my life. Now buttoning a button is an almost insurmountable task.

My employer graciously lets me work from home full time. This enables me to save energy getting ready for the day without a commute that can be exhausting but I miss daily face-to-face social interactions. I have to work at being alone without being lonely. I also tire quickly and thoroughly. I’ve learned I can handle one activity a day. My illness has forced me to adjust to a simpler life.

I have adapted to life in a wheelchair. But a little thing like a curb or a step stops me in my tracks. 


“It’s the little things.” 
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Saturday, June 25, 2016

MS & Relationships

I am very lucky to have the family and friends I have in my life. They are understanding and loving. But sometimes interacting with friends and family can be more challenging when you have multiple sclerosis. Important relationships take effort and energy.

Fear of worrying my friends and family has taught me to sound positive when answering the "how are you?" question – “Fine.” “Good. You sound good.” And, being a people pleaser, I sometimes feel I have to comfort the people who get upset when I am feeling bad. So I filter my responses, I am cautious with my words. 

 I am no longer able to be the same Rachel I was before MS hit me, though I try. It’s harder for me to interact in groups. My wheelchair isolates where I can go and where I can be in the room. If there is a lot going on, I can get disoriented, wondering where I should focus my attention. I often wonder if the pain I am feeling on the inside shows on the outside. I know my energy level often shows on my face or in my body language. So things are cut out or cut short. I often wonder the title of Mindy Kaling’s book, “Is everyone hanging out without me?” 

 The disease not only wreaks havoc on us internally, physically, and emotionally, but externally as well, as it changes our relationship with the world and the people in it.

Suddenly, I am Rachel with MS, Rachel in the wheelchair, or even just the girl in the wheelchair. This especially goes for people I interact with infrequently. I am easily recognizable now, the redheaded girl in the wheelchair. I try and remind people that there is a human being in this mechanical contraption by being upbeat and friendly. But I know people see the wheelchair first.

So when you see a wheelchair just remember there is a person there too.
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Friday, June 3, 2016

I'm Sorry

“Am I in your way? I’m sorry.” “Could you move so I can get through? Sorry.” “I’m sorry.” “I’m sorry.” “I’m sorry.”

I say “I’m sorry” a lot. I’ve said, “I’m sorry” so many times in the past weeks because I’m progressing and things are getting harder. Adam always tells me to “stuff your sorries in a sack.” Meaning, not that he doesn’t accept my apologies, but to shut up about it. I don’t need to be sorry.

By saying, “I’m sorry” to everyone over every little thing, I think I’m really saying, “I’m sorry I have MS.” I’m saying I’m sorry because I am. I am sorry that I’m not able to do the things I used to do, want to do, and can no longer do. Maybe the “I’m sorry” I keep repeating is less an apology than it is me saying, “I’m sad that I have MS.” I know it’s not my fault and I’m doing the best I can. But is it? And am I? The fact that MS doesn’t follow a structured path makes it all the more infuriating. “I’m sorry I don’t know what next year will bring, or even next week, or even tomorrow."

How do you live with this thief of a disease? It won’t let me stop from feeling sorry.  But the trick is to allow ourselves to feel sorry without feeling sorry for ourselves. 
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