Sunday, May 15, 2022

The Liberation & Necessity of Hobby Accommodations

Often the statement is said, “MS took from me...(fill in the blank)…”  Multiple Sclerosis takes a lot physically and emotionally, and it is frustrating and depressing. There’s no getting around the ongoing loss and grieving process of living with a chronic and progressive illness.  It deserves acknowledgement and shouldn’t be minimized or dismissed. 

Being optimistic and living well with MS demands immense resilience and coping skills.  It also benefits from accommodations and adaptive technology. While often described and prescribed for work and personal grooming, accommodations that support ongoing participation in hobbies are especially joy inducing.  They help reduce or perhaps delay some things on the long list of things that MS took from a person.


Accommodations are crucial for how they can make an activity rewarding and fulfilling instead of a reminder of how much we can’t do anymore. Thinking about what makes an activity difficult will help determine which accommodations would be useful for an individual. 


Sometimes looking at potential solutions will help zero in on the barrier.  Seeing what’s possible can bring an “aha moment” for why something feels too burdensome to undertake anymore.  This can help with the task of designing accommodations around you and your unique issues and preferences.  


Helpful online search terms include disability accommodations, assistive technology and adaptive tools coupled with your hobby. 


There are many tools that will help reduce dexterity demands, potential for injury and cognitive exertion. If they are easier to use, safer to use and easier to understand, they may accommodate a difficulty caused by MS Symptoms. The goal is to make the activity enjoyable and doable again.


For issues with Energy Exertion, consider time of day, duration, body position, and movements required of the task. For Dexterity Limitations, think about tools designed to use leverage, improve stability, and enhance safety. For Cognitive Overload, explore organization of the space, visibility of tools and supplies, and reducing the number of decisions needed throughout the activity.  Each of these issues may benefit from different accommodations, and you are ultimately the best judge of what might help you.


Accommodations can be liberating for supporting continued ability to do things we love in some capacity.  While assistive technology is geared toward people with disabilities, some items come in the form of an indulgence or specialty item for those most enthusiastic about a hobby.


Learning about MS and accommodating MS symptoms can be a full-time job.  If thought of as a portion of a wellness interest or effort to help me continue doing things I love, it’s less emotionally triggering for the damage MS has done to my body or may do in the future. While not a traditionally thought of hobby, my focus on wellness and living well with MS definitely qualifies as a hobby. Researching, applying wellness information to my own health, journaling and writing a blog are all things I’m compelled to do in my free time that help me feel a sense of fulfillment.   


My laptop and smart phone are helpful devices for learning and writing. I can make myself physically comfortable while using them better than I can using a desktop computer.  I can sit or lie down on the sofa while writing and learning. These accommodations help me be able to do this hobby.  


Drawing and painting used to be a favorite hobby of mine. With MS, my ability to control my hands and brush strokes has diminished. If I take it up again someday, I know I would benefit from a leaning bridge.  Designed for drawing on horizontal surfaces, a leaning bridge spans artwork and allows the artist to rest their hand above the artwork.  For easel use, there are products that use a rail affixed to the top of the easel and a Mahl stick hangs and slides to allow use over the full canvas. 


Another hobby I enjoy and greatly benefits from accommodations is cooking.  Over the years, the time I spend creating in the kitchen has fluctuated based on my MS symptoms and life demands.  Fatigue discourages expending extra effort for nonessential tasks.  The effort required can often be more than I’m up for undertaking when MS fatigue and spasticity pain overtake me. When feeling poorly due to MS, it’s exactly when joy from a hobby would serve my mental health all the more. 


There is an abundance of accommodation options for cooking, and it’s a terrific example to use for a deep dive on accommodation methods and equipment. Counter seating and a comfortable stool are good for stationary tasks and rest breaks.  Kitchen appliances useful for gourmet fare are kind to a person budgeting their energy.  Some are reasonably affordable and others are crazy pricy.  Combination crock pot/pressure cooker/air fryer appliances reduce the amount of time needed to monitor the stove. Sous vide cooking in a water bath allows for long unmonitored cooking time as well. Automated mixers exist that will stir a pot while cooking. Food processors help with safely cutting vegetables and mixing.  


Utensils designed for comfortable gripping are worth researching to maximize ease of use and meet personal preference. Silicone mats, trivets and coated bowls keep cutting boards and bowls from sliding and offer close options for moving hot dishes.  


Things that don’t require unscrewing a lid or using both hands to use are helpful.  Olive oil bottles can be decorative and don’t require removing a cap.  Gravity activated electric pepper and salt mills allow for fresh ground seasonings with a single-handed movement without buttons to press or extra effort. 


Anything that helps with clean up can minimize barriers to cooking. Touchless soap dispensers are good for handwashing. An electric dishwasher or human in the house willing to clean up helps reduce energy needed.  They also make it less of an impediment to using equipment that is difficult to clean by hand.  


Think about foods you like and want to make repeatedly, and store everything needed to make and serve them together.  Dedicating a single location for coffee, filters, hot water kettle and tea allows for making them without accessing multiple areas of the kitchen.  The same goes for popcorn in my home. A shelf in the cupboard next to the microwave holds the popcorn maker, popcorn, the bowl for serving. Olive oil and salt are within reach as well, and no extra steps or cupboard access are needed.


To someone without any health issues, the suggestions mentioned here could seem absurd. All of these tasks don’t take a lot of effort for them. Given my MS fatigue and pain, combining all of these suggestions creates an environment that shifts my attitude toward cooking from a burden to a joy. These accommodations allow me to keep enjoying my hobbies, and my hobbies help me combat stress and enjoy life. 


Hobbies are not just for those who can do them easily, and doing things differently than we used to do them is not failure.  Accommodations are liberating and necessary when they keep us doing what we love. 


Wednesday, April 20, 2022

MS Springs: Spasticity & Spasms

Spring is a time of fresh starts and emerging from winter. Spring is a season, a mindset, and a promise of better days ahead.  Lately spring for me is the overreaction my arms and legs give for a slight touch. Reflexes that have always overreacted to the tap on the shin or elbow are now exaggerated to a point that seems almost comical for the physical threat they pose to anyone within reach.  


Spring now correlates with spasticity and spasms for me. The energy and movements my limbs release are disproportionate to the touch that triggers them.  A limb’s quick return to original position and residual spasms mimic the vibration and cartoonish boing of a spring as it comes to rest. 


My spasticity isn’t what I anticipated from the descriptions I’d researched over the years.  


I remember wanting to know if my vague symptoms were spasticity. I look back to medical forms I filled out asking where the pain was, and I consistently circled my calf muscles and the underside of my forearms. To my neurologist, I described my arms as cramping and my legs as being “clompy” in the morning. The first few feet of walking were jerky and unreliable. I’d go slow and touch the bed or walls to help with balance. My movements resembled a less than graceful horse trotting since my legs jerked forward in a way that isn’t ideal for humans.


With hopes of knowing what to expect as my Multiple Sclerosis symptoms progress, I soaked up any information I could find on spasticity. Online information described it as a stiffening of the muscles, and that is part of my experience. Muscles are tightening and take more effort to stretch. Getting my legs and arms moving fluidly in the morning is a process.  


I’d understood spasticity could disrupt sleep for the restlessness legs experience.  The inability to relax and fall asleep made sense. I didn’t realize that a deep slumber could be violently terminated for an innocent and slight movement of the blankets or a light touch on my arm or leg from my partner on the other side of the bed. Suddenly wide awake in the dark of the night, my physical condition is impossible to ignore. Spasms are painful, frustrating and depressing. Practicing mindfulness and relaxation helps put perspective to the situation. 


I can still do so much. Hiking, biking, and jogging are still possible for me. During the day, the neurological misfires from my brain through my spinal cord to my arms and legs are usually invisible. Yet sometimes they emerge unpredictably and embarrassingly.


I’m getting better at explaining how my body works to people close to me. I need to. The swift reaction of limbs can feel violent and rejecting. Whether my arm or leg jerks away from them or pushes them away from me, it comes across as a disproportionate and angry reaction. As with many MS issues, the physical aspect of a body not working ideally is only one part of the process of dealing with MS. How I feel about it, how it can affect my future, and deciding whether to share my experience in my relationships is a whole other thing.  


I’m learning stretching throughout the day every day is necessary and nonnegotiable. Flexible movements that were once easy are now difficult and painful. I still have hope that working on this from every angle available will improve flexibility, reduce pain and reverse some of the impacts from the many lesions in my spinal cord.  


MSAA has a terrific reference page on Spasticity (stiffness), and passively stretching specific muscles at least a minute is an important recommendation to know and use. Aqua therapy and medications can help a lot. 


I’m a big fan of complementary therapy, and most of the treatments listed below are things I do daily or regularly.  When I start noticing increased symptoms, often I realize I’ve lapsed doing something on the list. Make sure to discuss any treatments with your doctor first!

  1. Hydrate throughout the day. Stop or slow down drinking fluids a couple hours before bed time to minimize nightly bathroom breaks. 
  2. Stretch throughout the day
  3. Physical therapy exercises tailored to individual needs
  4. Relaxed minute-long passive stretches or yoga for mind-body connection and muscle care
  5. Walk, swim, move in an environment you enjoy
  6. Eat a banana a day for the potassium, magnesium and nutrition (supplements haven’t been as effective for me)
  7. Topical lotions, body wash and sprays with magnesium, CBD oil or sport relief purposes  
  8. Support limbs with pillows or blankets when resting or sleeping 
  9. Magnesium supplements 
  10. Vinegar based treatments such as pickle juice, apple cider vinegar or homeopathy formulas for stopping leg and foot cramps 
  11. Medications such as Baclofen or Botox

I recognize that so many people with MS have it a lot harder than I do, and what I’m doing won’t be enough for them to find relief. I appreciate learning from them for how they manage their physical health and mental well-being. My heart goes out to them for living with MS in times when medical advancements and treatments were fewer than they are today. My aim is to manage my own health as best as possible, and my hope is to live long enough to see better days for all of us.  

Wednesday, March 9, 2022

Playing the Cards I'm Dealt

I love the emotional and intellectual sides of aging.  With each decade, I grow more certain about who I am, what matters to me, and where my strengths lie. I worry less about pleasing others and more about doing what’s right for my physical and mental health.  Without Multiple Sclerosis, I likely would have enjoyed this aspect of aging, but I believe having MS accelerated my drive to live a life I love and feel good about myself. 


I thought some things were non-negotiable while I was pre-diagnosis and in peak physical health.  Post MS diagnosis, those same things were reconsidered and proved to be negotiable. With diagnosis, my body’s confusing aspects had an explanation, and I could no longer dismiss them when they appeared.  Work and the expectations people placed on me were no longer the highest priorities. Rest, sleep and personal fulfillment earned positions of power that would affect choices and influence decisions.  For me, this was helpful and necessary.    


There’s a wisdom that developed slowly and was hard earned with each revelation. It continues to constantly evolve and contribute to a healthier perspective and sense of well-being.


One-quarter of my life lived is post MS diagnosis, and I’ve likely been living more than half of my life with MS.  I will turn 52 this year, and it tickles me to compare my age to matching the number of cards in a full deck. I’ll consider myself as playing with a full deck and working on adding another deck. I’m wary of the wild cards, but I will play what I’m dealt.


My MS experience has been painful, challenging and full of loss as I played the hands I was dealt. Changing the game helped me lessen my pain and increase fulfillment.  As I reflect on the last 14 years since my MS diagnosis, I appreciate the personal and professional growth I’ve experienced, the changes I’ve made, and the people who supported me along the way.  

Sunday, February 6, 2022

Short Days, Dark Nights and Big Hopes

Each winter, darkness pervades my free time.  Living in the Pacific Northwest, daylight hours seem to only exist on weekends and during lunch on weekdays. Dry, sunny days are less frequent, and spending time outside requires dressing for wind, rain and cold.  While invigorating to experience, inclement weather provides encouragement to stay inside and find comfort from the elements. 

It takes more creativity and effort to be active when the environment encourages spending time indoors. The draw of the sofa and screen time is compelling and comforting. I can justify that time and accurately describe it as productive by using it to rest, connect with others, learn, create, reflect and amuse myself. All are valid uses of time, and they only lack fulfillment if they sabotage my needs or goals. Usually the challenge is not the use of time but the amount of time spent on them. 


The weather and amount of daylight influence activities as much as energy level and work schedule constrain activity options. Multiple Sclerosis symptoms like fatigue and spasticity make movement more difficult.  Medication helps, but the time dedicated for resting and need for intentional movement tend to be greater in the winter. The days feel short, and the good weather daylight hours are brief and sporadic.  


Scarcity heightens the desire to grab those moments when the elements align with my schedule and disposition. I appreciate them more and will change plans to enjoy them.  Bundled up for warmth, even a short excursion in the fresh air rejuvenates. Chores can pause without guilt.  Feeding my soul is a priority.


In the darkness of winter, I seek options to nurture my physical health. Blue light therapy helps with the lack of daylight.  Yoga, cooking, projects, hobbies, audiobooks and podcasts reduce screen and sitting time while relaxing my eyes.  Activities that keep me moving and engaged while respecting the need for relaxation help make days more fulfilling.

There’s a big difference between not being able to do something and not wanting to do something.  Knowing work is something I get to do makes me appreciate that I can still work.  Knowing certain levels of activity are something I still can do and cultivate makes me appreciate that they’re still possible.  There will come a day when I will not be able to work or perform activities at the level I do today.  The fact that I can still work and exercise makes me appreciate today all the more, because someday I likely won’t be able to do either.  


Enjoying work and fitness now is bittersweet. They’re reminders that how I’m doing today is fleeting.  Health ebbs and flows with age and disease progression, and the path is not predetermined for a steady decline.  Ups and downs are sure to come, and uncertainty is certain. The big hope is to relish the moments of sunshine and jubilance and find fulfillment in the darkness.  

Wednesday, January 19, 2022

An ABC Mantra: Always Be Curious

Multiple Sclerosis affects brains and spinal cords, and damage affects sensations, movement and cognition. Each person experiences MS uniquely, and what helps one person might not help the next.  The right treatments, medications, diet, coping skills, life changes, fitness regimens and lifestyles are different for each person. They also change throughout a person’s life.  What works well for one person at diagnosis might not work for the same person years later. 


The same is true for every person with or without a chronic illness.  One size doesn’t fit all.  Yet, I feel strongly that everyone can benefit from approaching ourselves, each other and the world with curiosity.

Always be curious.  


Try it as a mantra when anticipating hard things. When I’m curious, I’m more likely to listen and learn and less likely to judge and react. Considering there may be more to know helps me have a mindset of compassion for myself and others. Noticing changes in my body with curiosity helps me notice what helps, what hinders and how I may be able to adapt. Awareness breeds a compulsion to act.


It’s natural to feel sad, afraid and alone when living with an illness.  People try to understand, but they aren’t living in our bodies and can’t ever really know our experience.  When feeling judged, dismissed, pitied, or faced with unreasonable expectations, it’s tempting and reasonable to defend ourselves. When I’m able to stay in a place of curiosity, interactions and my feelings always fare better.  Whether someone else is out of line or not affects how I behave less and reveals more about them than about me.  


Feeling joy and fulfillment are another opportunity to approach with curiosity. What about it felt good, and how can life choices breed more joy? Noticing and knowing the source can help shape a satisfying life.  


Always Be Curious.

Sunday, November 14, 2021

Intentional & Collaborative Planning

It’s typical to ask “What do you want to do today?”  I’ve had richer conversations and better success asking, “What are your goals for the day? What would make today successful for you?”

It helps shift the conversation from specific decisions to a discussion about attributes that matter to each person. It might feel a little goofy or too structured, but I promise it contributes to relationships of respect and understanding with people who mean well and care.

During the holiday season, it’s even more worthwhile to be clear about what matters to each of us.  Holidays bring out heightened emotions and expectations for how to celebrate. Keeping traditions and doing what we’ve always done isn’t always possible or wise anymore. Whatever the reason, it’s worth introspection and discussion to adapt.

What are your goals for the day, the weekend, the month or the holiday season?  


I try to ask these questions of myself and those I’ll spend time with.  When I know what I need to get done, what I want to do and what the minimum is that I hope to do, I can be realistic about what will meet my needs. 


When I share my answer with others, they help me make it happen.  When they share with me what they’d like, I factor their needs and preferences into plans.  Usually our desires are compatible, and meeting everyone’s needs is doable.  When we’re on the same team and plan collaboratively, we often come up with better and more fulfilling plans than if we’d left decision-making to one person.


Everyone has different desires, and each decision has different implications.  A solution to one barrier might create other problems or eliminate something important to someone else.  


What’s important?  What’s the essence of what would make it successful?


Knowing this helps shape decision making.  We can collaborate on plans and understand what we’re trying to accomplish for each person involved.


If you don’t know what you want, you’re unlikely to get it or know you got it.  If you don’t share what you want, you’re leaving everyone guessing and unlikely to make decisions that will meet your needs.


I have a friend who shared they get frustrated when they plan holidays and vacations with everyone in mind, but no one asks what they want. They understandably feel unappreciated. It’s not easy advocating for our needs, and often friends and family forget to ask. Proactively asking everyone what they want or need allows everyone to share in the conversation and decision-making. It also helps make decisions when things don’t go as planned. Everyone can contribute to problem-solving, because they know in advance what attributes are important to each person.


There are some who might not cooperate.  Anyone sabotaging plans or dismissing another’s needs must be dealt with or avoided. If that’s an issue, find an ally who can reinforce or champion your wishes along with those of the rest of the people in the group. If that’s not possible, one-on-one counseling may be needed to navigate the specific situation or relationship.


In good relationships, sharing needs and limitations leads partners, family and friends to advocate for each other.  Being self-aware, forthcoming and curious cultivates healthy bonds and boundaries. Being intentional with planning and collaborating with everyone involved is an opportunity to learn about each other, accommodate needs and appreciate our uniqueness.

Tuesday, October 19, 2021

Blame the Disease, Not the Person

Question: What was most and least helpful when you were first diagnosed?

Answer:  The people.  Collectively, they were the most helpful.  Individually, some were the most and some were the least helpful. 

The people who listened, asked questions and validated my feelings helped me the most with my Multiple Sclerosis diagnosis.  Answering sincere questions helped me analyze what was true at that time and what was fear for the future. Thinking through the issues and explaining my experience helped separate what I could influence from what I couldn’t. They offered suggestions while respecting my opinions and decisions. The paid support people who helped me immensely included my medical support team:  primary care provider, counselor, neurologist, and physical therapist. The unpaid support team included family, friends, coworkers, online connections, and the local MS self-help group.

Those who told me what I needed to do or why I shouldn’t worry were na├»ve and ill-informed.  They would prescribe treatments without knowing what caused my symptoms or what my symptoms even were. They’d tell me I’d be fine since someone they know who has MS is fine. They assured me I’d stay healthy to appease their own fears, not mine. They included people in all of the categories listed above who helped me immensely.  A person’s profession or relation doesn’t automatically place them in the category of helping or hindering. How they behave and interact does.

The people who judged me harshly for how my health was impacting them caused the most stress, guilt and pain.  I was criticized for being less attentive in my relationships and for letting MS be my focus.  I believed it was a personal fault that I was burdening others.  

I genuinely thought I should be able to deal with my health privately and keep doing everything I’d been doing for others.  I wanted to be strong and prevent the people in my life from being affected by my diagnosis and documented chronic illness.  

MS symptoms and exacerbations made me unable to meet the expectations I had for myself and others had for me. It helped me realize the expectations had always been unreasonable. I learned I’d never be able to be healthy physically and emotionally if I kept trying to meet unreasonable expectations.

I realized I can’t do this alone, and I shouldn’t.  

The people who validated that I needed to address my health and accepted things would change – they helped me the most. 

The people who were angry, hurt, blamed and resented me for their unhappiness – they helped force me to realize I didn’t need to keep working toward the life I’d been building, and I probably couldn’t if I kept trying. In a painful way, they helped me open my future to more possibilities.  Changing things wasn’t failure, it was survival.

Survival requires self-care. To people who are used to benefiting from an unhealthy relationship dynamic, other people practicing self-care feels like neglect. It’s good that terms are available now to describe manipulative behaviors. Consider (and look them up if unfamiliar) gaslighting, shaming, isolating, catastrophizing, guilt-tripping, silent treatment, insults disguised as jokes, and jealousy are just some of them.  Hopefully discussions and education on unhealthy relationship tactics help people recognize them instead of feeling responsible for other people’s feelings and accusations. 

It helped the most when I and the people in my life accepted my health as a fact of my life and worked together to make the most of my abilities and limitations.  They watch out for me, help me reflect, know my health may inconvenience them at times and always make it clear they are on my team.  

We are united in our approach: Blame the disease, not the person.