Sunday, December 15, 2019
Family relationships are hard. I look back at decades of immediate and extended family holiday gatherings, and I notice what has changed and what seems like a given. Long-held disconnects or resentments lie beneath the surface and feel ready to erupt at any moment.
Consider as mere mortals, it’s rare to be perfect in these moments. I’ve left family gatherings spending huge amounts of time thinking about what was said, what wasn’t said, and what pushed my buttons. I’ve lectured myself about what I should have done differently and how I shouldn’t let people’s comments or opinions anger me. I’ve been relieved when it’s over and I won’t need to deal with it again until the next holiday.
Dropping it until the next time I see them again prevents me from having a different experience next time.
When I worked in a woodshop and made mistakes, I’d default to reminding myself: “Being good at a craft isn’t about doing everything perfectly; it’s about knowing how to fix mistakes.”
I’ve taken to applying this concept to relationships. While I wouldn’t call an interaction a mistake, I will acknowledge plenty of times where I wish I’d reacted differently in a situation. Instead of a mistake, I’ll call it letting my frustrations show. While those moments are uncomfortable and possibly embarrassing, they’re consistently opportunities to open a dialogue and nurture relationships.
When asked how a recent holiday gathering went, I joked that no one killed each other and we all still love each other. While tears were shed and shocking comments were made, I was blown away that in each moment someone acted with grace and stayed in the conversation. It’s that grace that heartened me and inspired me to follow up with people after the event. Some were earnest conversations while others where quick comments during a hug. “I’m proud of you.” “Thank you for being kind when that was said to you.” “I love you.”
While I’m tempted to write a note instead of talking to them, I see a huge benefit to saying these things instead of sending a one-way written note. Saying it to them gives them the chance to respond without a lot of extra effort. It invites more reflection and conversation without demanding it.
I can acknowledge what hurts while knowing with certainty that we’re all doing our best in each moment. I don’t need to behave perfectly, and neither does anyone else. If someone shows frustration and behaves poorly, I can listen and know they must need to say it. I can lead with grace by letting them say all they need to say and showing compassion for their pain. Whether I agree or not isn’t the point. I’m choosing to keep this relationship, and helping people have their cathartic moments has helped us move on from some of those past hurts.
Yes, I joked that we didn’t kill each other the last time we were together. Yet I am extremely proud of how far we’ve all come in how we interact. We spend more time listening and showing compassion for each other. We’re having the hard conversations that need to happen if we want to nurture our relationships. We’ve been through a lot individually and collectively, and I’m grateful we keep coming back.
Being good at relationships isn’t about being perfect. It’s about nurturing them with sincerity and kindness when they’re not as good as we’d like them to be and when they’re already great.
Wednesday, November 13, 2019
|Warnings on the door to the MRI equipment room|
It’s the morning of my MRI scan and neurologist appointments. Leading up to them, I’ve anticipated needing to seek support and to allow myself time to process whatever I learn today. I tell myself that test results don’t change how I’m doing. They just give me more information to consider.
The rub is that I anticipate being sad with any possibility today. I feel worse than I did earlier this year. Eight months ago, I learned I’d had a couple of new lesions in the past couple years that I attribute to the process of getting divorced. Side note: A saying I found on a greeting card is absolutely true for me; “Getting divorced sucks. Being divorced doesn’t.” I’ll add to the end, “…at all.” For me being divorced has been a lifesaver for my mental and physical health.
Back to today. I hope to learn if either my MS is progressing or it’s stayed the same while I feel worse. If there’s new activity, I might be able to console myself with the hope that the pain I live with may subside with treatment and changes to my medication. If there isn’t recent or current activity, I’m disheartened to make sense of why I have more MS symptoms and feel so bad.
To cope with feeling sad and afraid, I’m approaching today with gratitude. I feel the pull of wanting to mentally crawl back into my own head and armor myself from the outside world. Focusing solely on myself is an attractive option. Yet I’ve found over the years that checking out from the world and my relationships is the worst option for me. Pushing myself to interact with people while also writing and facing my fears head-on works best for me.
Gratitude advice often includes thinking of three things each day that you’re grateful for. I think it’s helpful, but I think it misses what helps me most. It’s most nurturing to me to tell someone I’m grateful for something they’ve contributed to my life.
Often in my life, people have shown appreciation for my work when I’m leaving a job or after I’ve left. It is sad to me that I really could have benefited from the encouragement more while I was doing the work than years later. I’m a firm believer in having all my relationships in a place that I’m okay with if one of us isn’t around tomorrow. That means telling people I appreciate them in each interaction rather than making a grand gesture at the end of a life chapter.
Today I started with thanking the imaging center receptionist for working on Veteran’s Day when other people including myself have the day off from work. It was helpful for me to be able to make appointments today that didn’t require me to change my work schedule or shuffle other obligations. It may or may not have been a big deal for her to work today, but I truly appreciate it.
Alonzo the MRI Technician greeted me with a warm smile and hearty laughing comment, “Hi, Stacie! I’m still here, they haven’t fired me yet!” He remembered our conversation from the last time he did my scan. I did too, and it was relaxing and felt good to know he enjoyed our banter and was treating me as a person and not just a patient.
He passed me off to Kyle who was terrific. Kyle commented I was a seasoned pro at getting MRIs, and he gave me options that made the scan go quicker while he still professionally addressed all the required steps. It was nice that he offered to either comment on what to expect for each portion of the scan or skip them to make the scan go quicker while still being available at any point. Omitting the starts and stops let him flow from one scan to the next, and I was out of the MRI tube in half an hour. As he disconnected my IV, I commented to Kyle that he and everyone at the facility are excellent at setting up IVs. Lots of times, medical providers have difficulty finding my veins. It can take a lot of time and frustration drawing blood or inserting an IV, but Kyle did it with ease on the first try.
As he helped me offload from the platform and wrapped up our session, I told him it seemed like coincidence or irony that the music he provided to my headphones included Red Hot Chili Pepper’s song, “Scar Tissue,” while he scanned my brain for MS lesions. MS lesions are essentially scar tissue on nerves in the brain and spinal cord. He rocked his head back to laugh, and he said he thought it was irony. I believe it’s technically coincidence, but I think a word that better describes it with the weight and feeling I experienced is happenstance. I like the song, and it tickled me to connect the name of the song to my unrelated situation.
I appreciate each interaction today, and I feel like I accomplished letting most of them know. Intentionally planning to do this helps me see outside of myself and my fears.
The receptionists, technicians, nurses and neurologists all make my health journey more pleasant. They make a fact of my life less depressing, and they help me keep going. For them and all of my friends, coworkers and family, I’m beyond grateful. Telling them how much I appreciate them is a small thing I can do, yet it is vital for shaping my attitude and outlook in life. It helps me put my mind in a place that recognizes how much larger life is than my personal circumstances and how much other people contribute to my well-being. I can rest easy that I won’t have unfinished business if we never see each other again. I know I’ve done what I can to make life more pleasant for myself and the people I’ve seen that day.
My last appointment this day is with my neurologist, and it goes better than I anticipated. The scans show that a couple of the white spots they saw in the last couple years aren’t there this time. I didn’t anticipate this result, but it still falls under the category of needing to reconcile the data with how I feel. My neurologist helps me navigate the issues that are causing me grief. He not only helps me create a detailed and comprehensive plan to try to reduce the problems I’m having, he cheers me up and gives me encouragement.
This day that I’d approached with apprehension was pleasant. Uncertainty pervaded my thoughts, yet focusing beyond myself and verbally expressing gratitude to people throughout the day settled me. On the drive home, I can feel my body start to relax. It’s been a good day, and I have hope.
Sunday, October 20, 2019
In true keeping with not quickly remembering the lessons I’ve already learned, it took me a few months of building frustration before seeing a situation I’m experiencing as something I could approach differently.
I volunteer for our local self-help group, and increasing work and personal health demands are making it harder for me to continue doing everything I’ve done for the past six years. I’d asked for volunteers to help. Some stepped forward and I appreciated their help, but still I felt responsible for more than I can continue.
I was getting frustrated, and resentment was building. I was getting grumpy and feeling like the others in the group were expecting too much of me. I was stuck in a mindset believing the only options were for others to do what needs to be done or for me to leave the group entirely.
I told close friends about my frustration. I detailed how I know what I do is appreciated, but I also feel people are putting these responsibilities on me because I look fine and am in better health than they are. Often, I’ve had people ask me what my association is with Multiple Sclerosis. I tell them that I have MS and I’m a member of the group. More than once, they’ve forgotten and asked me again a few months later. My takeaway from the conversations was that they don’t see me as a peer, they see me as providing charity.
It was on the short drive from work to our monthly meeting where I realized I don’t need to solve the entire problem. I only need to identify what I’m willing to do and let everyone know. The rest I can let go without guilt. If someone wants more, I’m not required to provide it.
I get a lot out of the group. I’m able to ask specific questions about their experiences and how they’ve handled issues I’m facing or anticipate for my future. Participating in the group is worth it to me, and it’s worth my time. I can continue meeting coordination, the monthly letter, periodic leader training sessions and phone calls with new members, because I’m able to do them on my timeline – at night, on a weekend or when I have the energy. Attending meetings is getting tougher due to work conflicts, and organizing speakers and special events is just too much. Feeling like I’m failing the group causes me stress.
I wanted someone to be a co-leader. I realized on the drive that I hadn’t been specific about what I needed, and I wasn’t differentiating between what I am willing to do, what I won’t do anymore, and what will not be done if no one else wants to take it on. A need for a group cannot be a demand of me specifically.
When I was 17 and my family was in a car accident, it created a belief in me that everyone else was allowed to fall apart and I wasn’t. While most of my family was more injured than I was and needed more care, I stepped up to take care of things. I watched adults who I thought would come to my aid break down and leave me to do things that had to be done. I resented and envied them. What would it feel like to not worry about everyone else and only take care of my needs?
I resented feeling like I wasn’t allowed to fall apart. I’d been labeled as strong, and I took it to heart. I thought because I was able to put other people’s needs before mine that I was required to do so.
It’s been only in the last few years that I realized that I have a choice and I’ve always had a choice. I am not required to be strong, I’m choosing to be strong. I’m not required to take care of everything that needs to be done. I can choose what I’ll do and let certain things falter. Whether I knew it or not, I was choosing to be strong because I wasn’t okay with what I thought the consequences would be.
During that drive to the meeting, I remembered this lesson. I considered that it could apply to this problem I faced, and I immediately knew it was right. I needed to focus on what is in my best interest to continue and let the rest go. It’s a big shift in my perspective to remember that I don’t need to carry burdens alone.
I’m working on stepping back once in a while to assess stressful issues more analytically.
1. What is making it hard for me?
2. What do I no longer feel is in my best interest to continue?
3. What makes me feel resentful?
4. Why do I think it needs to be done?
5. What are my resources?
6. How can I best take care of my needs?
7. How can I best invite help but not demand it?
8. Who else might care about it, and how might they be able to help?
9. Am I willing to accept help if it is done differently than I did it?
10. Am I willing to live with the consequences if it doesn’t get done?
The difference between feeling forced to do things and choosing to do them is huge for me. As my health changes, I may be able to do more or less than I’ve done before. If I need to change what people expect from me, I can let them know, give options and let it go. If someone is angry or disappointed, I can let them be. If I weigh the options and decide to do something, it’s liberating to know for certain that I chose it.
Tuesday, September 10, 2019
I’ve started thinking it should be the standard to have our time with Multiple Sclerosis described with two numbers. It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.
For me, I was diagnosed 11 years ago, and I can estimate my first exacerbation was likely 27 years ago. This puts my MS number as 11 over 27. Short hand, it would be written 11/27 MS yrs.
Often when meeting new people, we’re asked how long we’ve had MS. Those who are more informed tend to ask how long since we were diagnosed. Given many of us with MS have lived with it a long time before we know it and are diagnosed, those years prior to diagnosis take a lot of words and time to explain. At times it feels like I’m slowing the conversation and forcing someone to listen to a long explanation. It doesn’t help that the words diagnosis and exacerbation have a lot of syllables and are a mouthful to say in any conversation.
Those 16 years between what I now realize was an exacerbation and the year I was diagnosed were filled with odd sensations, loss of control of hands and feet, bladder and bowel issues, and a ridiculous amount of fatigue that kept me exhausted for years. All those years, I thought I was healthy and didn’t know they indicated something seriously wrong with my health. I thought it might just be normal, because symptoms were sporadic or nebulous. I had no way of knowing that my exhaustion wasn’t solely because I was fighting off a cold or stressed out.
In those 16 years living with MS but not knowing I was, I became an expert on adapting to change without realizing I was adapting to living life with a chronic illness.
For my fatigue, I put a lot of effort into outsmarting my energy level so that I could get more done with less effort. I’d organize every aspect of my life. My schedule, my professional obligations, my home, my finances and holidays all had lists and systems in place to ensure I kept up with everything I wanted done.
For dropping things or tripping, I could only conclude that I must have been distracted. I’d vow to pay more attention. I’d plan to grasp things with intention and lift my feet purposefully.
Bladder and bowel issues were addressed with diet and research. I’d follow the recommendations available at the library, online and suggested by friends to see if any of them worked. Sometimes they helped and sometimes they didn’t. Eventually the exacerbation would subside, and I’d attribute the problems to a disruption in my routine, eating differently or not getting enough fiber. Looking back, it’s a bit crazy I didn’t realize it wasn’t normal, but it would always improve after a while. How could I know when I don’t have another body exactly like mine to compare it to?
I, along with many others with MS, unknowingly adapted to MS symptoms just to keep on keeping on. The relief of having a diagnosis allowed me to add one more crucial factor to consider when making decisions. The benefit and the burden of this knowledge is an ongoing fact of MS living.
Pre-diagnosis, I might stay home all weekend to rest and feel like I was deficient. Post-diagnosis, I not only had a valid reason to rest but a compulsion to rest for fear of causing an exacerbation. Thankfully, I finally had something that my friends, family and I knew about me that might offset the judgments that I was lazy, didn’t care or was making an excuse to avoid something. Those closest to me looked out for me and pressured me to do less. The expectations for me and from myself now had a new lense through which my performance was measured. It is both liberating and confining.
Post-diagnosis, my challenge has been to find a sweet spot of balance between activity and rest. Perspective, healthful habits, continual learning and adapting helps. At time I can do my best, and I still won’t be able to adapt enough for the change needed for the circumstances. It doesn’t mean I’m unable to deal with change. It just means I won’t be perfect in every situation. Notice it, acknowledge it, repair any damage to others I may have caused, learn from it, and move on. I can’t do better than my best. That’s enough.
For my suggestions and perspective on organization, see: Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness
Tuesday, September 3, 2019
Completely in keeping with my desire to say yes to life and try new things, I said yes when Rosemary of Brazen Living asked me to give my perspective on trying new things. She sought me out after reading my article, Trying New Things: The Rewards Usually Outweigh the Risk. She put together a roundup of viewpoints and advice on pushing boundaries and trying new things.
Check out Rosemary's Brazen Living roundup here, and check out my original post about trapeze here. Enjoy life, all!
Thursday, August 29, 2019
First, I’ll say it ended okay for now. Hours later, I’m still feeling vulnerable and sad. Sad at my situation and sad for how much worse it is for many others.
Step back to this morning at work. I choked back silent sobs just wanting to get it together. I’m in my office, standing at my desk and wiping away tears. I’ve just gotten off the phone with my super exclusive specialty pharmacy and copay assistance representative for my disease modifying medication. I say super exclusive because this is the only pharmacy I’m allowed to use for this medication. This is the most important medication I take that holds hope for slowing my Multiple Sclerosis disease progression. It doesn’t cure anything, but it may keep my immune system from attacking my central nervous system as frequently as it would without the medication.
My health care insurance changed the pharmacy I need to use. That’s not the problem I’m struggling with right now. Before it changed, the previous pharmacy phone rep told me that my copay assistance was denied because I’d used up all the funds for the year.
This morning I was told that after my insurance pays the amount covered by my policy, my one-month supply of medication is $2,317. Copay assistance provided by the manufacturer of the medication caps at $12,000 per year. The math doesn’t work out in my favor. I calculated that copay assistance will cover 4.8 months. I need to take this every month, and that’s not even going to cover me for half a year. The rep keeps saying I need to be aware of this when I make an order because I’ll have out of pocket to pay.
I know I’ll fare better if I stay calm and wait for final answers before getting upset. My body doesn’t comply, and while I’m polite to the reps, I’m barely getting the words out – “Thank you for your help. What can I do?”
The co-pay assistance rep says she’ll make some calls and find out the balance of my co-pay assistance fund. She promises to call me back by the end of the day. I thank her and hang up while choking back immanent sobbing.
This sucks. I hate that I have to deal with this. I hate that my health is frustrating and I live in a nation where even with terrific insurance coverage I feel like a burden and at risk of needing to do without prescribed health care.
My work day continues, and I talk to a few people to continue projects and discuss next steps completely unrelated to the experience I just had. I’m still wiping away a tear during one conversation and tell them, “I’m sorry, I have something unrelated I’m dealing with.” I continue to discuss the project as if I’m okay.
Within the hour the copay assistance rep calls me back and says I still have over $9,000 in my copay assistance fund. I have no answer for why I was told that the fund was exhausted. I have no promises that it won’t be a $2,317 debit to that account each month. I’m only assured that I have enough to provide my medication through the end of the calendar year. For now I’m fine.
If I’m still taking this medication next January, I’ll need to ask each month if they’ve completed the “two-step process.” She keeps saying this as if I know what that is. I finally interrupt and ask what is involved in the two-step process for ordering. She explains it’s where the pharmacy determines the amount covered by my insurance, schedules a delivery date and then bills my copay assistance fund. Only then will they know if there is an out of pocket amount I owe and how much it is.
I asked her if the pharmacy would call me back after knowing the amount due and let me know if my personal credit card is going to be charged beyond what I’m ready for. She says yes. That’s what I have to go on right now. Best case, it keeps getting covered, magically the $2,317 per month is reduced after the copay assistance program pays, and I can keep using this medication next year. Worst case, next year I’ll need to pay $15,805 out of pocket above and beyond what I pay for my health insurance. If worst case comes to pass, I’ll more likely work with my neurologist to see if there’s another medication I can use that is covered or has a better copay assistance program.
The details and drama of dealing with this is exhausting and stressful, and I’m sick of it. I share this not to ask for pity or sympathy, but to spread awareness about how life is when living with an incurable disease not of my making. I wish I had the energy to advocate loudly for pharmaceutical medication reform. But it’s just too big and too much for me to do on top of taking care of my health, working full time and trying to live well. I wish I could distract myself with anger, but I’m too tired or not distanced enough to be angry. I hope to be able to do something productive with this. I hope people sicker and less able to navigate bureaucracy can get what they need to be able to obtain the medications they need without spending down their life savings or declaring bankruptcy. Even then, I understand our system isn’t likely to provide all they need.
We need a better system. We need to care for our weakest and most vulnerable. I have insurance, aptitude and patience to deal with this, and it breaks me at times.
Tuesday, August 6, 2019
It’s interesting to me that the same task can feel stressful sometimes and relaxing others. It really shows that it’s not about what I’m doing, rather it’s how I feel when I’m anticipating or doing it. It’s how I judge the task in the moment.
Needing to cook dinner after a long workday may feel like one more burdensome thing that needs to be done, while spending hours in the kitchen baking or creating a new dish on a weekend might be a therapeutic activity resembling meditation for the focus and relaxation I feel.
The same can be true for a bike ride or jog where I’m trying to perform at a certain pace or complete a set distance. Doing the same distance with no expectations might feel like an easy activity. What amazes me is the pace might only be a mile or two less per hour for it to feel relaxing. While I love pushing myself and feeling strong for the accomplishments, I’m realizing that including the slower pace at times is better for me than continuing to push myself. It’s also clear that periodic no-movement days are good for me.
When someone asks what I did all day and I say nothing, I often realize it’s not true. I did do something. Most of the time, I’ve showered, I made something to eat, I napped, and I watched television that entertained me.
I’m realizing I really need to think of these slow-moving episodes as necessary recovery and recharging. I need to do this not because I’m deluding myself or making excuses, rather I need to place value on what my body needs to keep performing. While this is true for any human, it’s especially true for me given Multiple Sclerosis presents itself in my life as almost constant fatigue. Because it’s constant, I need to push through the fatigue to work, be active and participate in life. This is common for many people with MS and other chronic conditions.
It’s often a source of frustration and requires intentional kindness toward myself to focus on what my body can do instead of what it can’t. The knowledge that I can push myself to the point where it triggers my immune system to start attacking my brain and spinal cord is scary. The reality is that I put a lot of effort into self-care, and my immune system continues to attack periodically.
Thus, it’s mandatory for me to include relaxing and recovery in my life to set myself up for the best health prognosis possible. This isn’t unique to me or anyone else, it’s just that the consequences may be more severe if I skip rest days. Still, it feels shameful to have days where I accomplish very little. It feels lazy, and laziness is ingrained in my psyche as one of the worst things a person can be.
It’s imperative that I view recovery days as productive. If I view it as a wasted day, it stresses me out. If I view it as necessary and good health management, I can relax into the day and enjoy it. There’s value in doing nothing. When I recognize doing nothing as an accomplishment that improves my health, I lose the guilt and feel better about my myself.
It’s imperative that I view recovery days as productive. If I view it as a wasted day, it stresses me out. If I view it as necessary and good health management, I can relax into the day and enjoy it. There’s value in doing nothing. When I recognize doing nothing as an accomplishment that improves my health, I lose the guilt and feel better about my myself.
Sunday, July 7, 2019
In a conversation with coworkers years ago, one person reflected on his summers spent in their backyard pool in California. I responded with excitement and jealousy that he had his own pool when all I had was a bike! Another coworker who grew up in Hong Kong, exclaimed with awe, “You had a bike?!?”
Wow. I laughed at my own ignorance to my privilege. To think she grew up in a large city and didn’t have a bike at all made me realize just how special it was that I could spend my summers biking and exploring. If I’d had to choose between a backyard pool and a bike, I think in hindsight a bike would have been a better choice for me.
As a child, my bike was my freedom. It allowed my sister and me to spend summer days at the pool in a neighboring town without limitation of our parents’ schedules. We biked to get ice cream, eat lunch in the town square and even to rent canoes. We’d practice riding without hands and see how far we could go. Our bikes were extensions of ourselves throughout the summer.
Once we could drive, bikes temporarily lost their appeal for transportation. Enter my college years where I didn’t have a car, and my bike allowed me to get to classes and work. Every time I allowed less time for travel meant my fitness benefited from pedaling faster to get there in time.
As an adult, I’ve enjoyed mountain biking and group rides immensely. Participating in sprint and Olympic distance triathlons have been rewarding experiences. This summer is a summer for biking for me. I signed up for the two-day Seattle to Portland bicycle ride, and I’m excited to do what is a bucket list experience for me. Being able to train and do the ride with friends is gratifying for the camaraderie beyond the health benefits.
Bicycling suits me well given the impacts Multiple Sclerosis has created in my spinal cord. I love jogging and manage extremely well, but bicycling allows me to continue when my feet lose feeling and coordination. Hills create natural intervals where I can put forth effort and rest on the downhill to best leverage my energy. Fatigue lessens and I sleep better when I’m active.
I have a new bike!
This summer, I was fortunate to have been gifted a bike from the organization Meat Fight. I love my new light and zippy road bike. It allows me to go faster and be more comfortable while riding. Having an expert watch me ride, ask questions and adjust the bike to me was fantastic for improving my experience cycling. Through their Meat Fight’s Meat Bike program, they give bikes to people with MS. Becoming a part of this group is fantastic for connecting with people with MS of every level of active from extreme endurance events to beginners wanting to start riding. Bikers ride all types of bicycles ranging from road bikes to recumbent trikes to hand cycles.
Bike options for all abilities
The more I pay attention on the trails and online, I see that bicycling can be accessible to anyone these days. The options available accommodate a lot of health issues that result from aging, chronic conditions and disability.
Recumbent bikes are great when balance might be an issue. Electric-assist bikes can be useful when wanting flexibility and back up for pedaling. Tandem bikes come in both side-by-side and in-line, and they can be excellent options if vison is impaired. Handcycle bikes are propelled using a person’s upper body instead of their legs.
When disability advances beyond being able to pedal solo or at all, there are bikes with wheelchair tandem setups that allow people to sit in front of the cyclist pedaling. An organization near me, Sequim Wheelers, provides free bike rides to elderly and disabled community members, including children. When I saw this, it heartened me to know that people who are not able to enjoy trails on bikes under their own power can now do so. The fresh air on the face, the beauty of the landscape, socializing with others in an active, outdoors setting – these can be available to everyone.
I’m encouraged to know that cycling can be adapted to suit my needs should my abilities change with age and Multiple Sclerosis progression. Being outside, active, and among friends improves my health and maintains my well-being mentally and physically. It comforts me to know this hobby can change and adapt with whatever the future brings. The only limitations are my ego and perspective.
Tuesday, June 4, 2019
The artistry of words inspires me greatly. The ability to express ideas and emotions critically with nuance and creativity moves me to feel deeply. Add rhythm and melody to the poetry of song lyrics, and it becomes something I can use for managing my wellbeing.
Music is especially useful for coping with any challenge, because it has the ability to replace the thoughts going through my head. If I can recognize when looping thoughts are taking over my mind and mood, I can change my attitude and outlook with music.
Artistry that speaks to me changes given where I am in my life and what I’m experiencing. It may feel completely where I’m at and validate me, and it may give hope for where I want to be.
A soft crooning love song can bring tears of sadness for my losses and tears of gratitude for all I still have. It can be a salve of melancholy for what is slipping away or a provoking plea for getting my needs met.
When I’m angry or frustrated, a nasally punk rock vent can feel liberating. Singing about unfairness or injustice can help me get mad and motivated enough to literally get up and keep going.
I want music that helps me feel strong. I want lyrics that acknowledge hardships yet tell my truth: I can be a victim, but I don’t have to be powerless over my circumstances and future. I want songs I can sing along with loudly that recognize I’m taking a hit but still deserve to live well and feel worthy. I want songs that induce power within me to know I will keep finding ways to keep going and like my life.
None of the songs that resonate with me are about living with Multiple Sclerosis or another illness, but it’s easy to substitute my body’s condition for whatever it is causing grief in a song.
Each person’s songs will be different for them. Our musical preferences, age, point in life and the condition we’re in will shape how we take in a song. I’m sharing a few of my songs just to show how they help me. I strongly encourage people to create their own go-to playlists. I have different sets of songs for different purposes. So far, I’ve created playlists titled Love, Dance, Jogging, Kick Butt, Yoga, Happy Songs and even one for Breaking Up & Moving On.
The first song that I associated with my chronic condition of living with MS was Pink’s “So What.” It was released in August 2008, a short time after I was diagnosed with MS. It gave me hope when I felt really crummy. I still love it for feeling mad, strong and rebellious. MS, you’re a jerk, but I’m a metaphorical rock star. While you let me fall and I’m having a hard time right now, I’m going to show you. You’ve knocked me down, but I’m getting up and I will thrive again.
“My Body” by Young the Giant feels so close to my experience when my body is frustrating me and I want to feel strong. I remember it playing while I learned to trapeze. In that moment, I was defying my body’s tendency to restrict activities, and I was actually flying from a trapeze bar to a catcher! I still can sing along to the song at times and have it apply perfectly to how I feel:
My body tells me no!
But I won't quit
'Cuz I want more, 'cuz I want more
But I won't quit
'Cuz I want more, 'cuz I want more
When I need a song to express how I accept the contradictions of life and rejoice in them to shape my life, I turn to REM’s “I Believe.” A scattered train of thought, clever in transition and hugely meaningful, it expresses for me the challenges of living in a messy world with a messy health condition but believing in good things and a better future.
“Born to Run” by American Authors expresses my eagerness to take all I can from where I am in each moment. It’s greedy and empowering with a positive vibe. I may lose the ability to physically run someday, and I’m going to do all I can while I still can.
I could list songs for days, but I’ll wrap up with an oldie from my childhood that I’ve loved always: “Anticipation” by Carly Simon. No matter what my life holds right now, I want to enjoy it. We are always living amidst what will become “the good old days.”
Sunday, May 5, 2019
As a young child wrapped in my mother’s arms, I’d hear her ask me, “What am I going to do with you?”
I’d answer in tempo with the script we’d created, “Hug me, and kiss me and love me forever.” She’d squeeze me harder while kissing the top of my head, and I knew she would.
She died suddenly at the age of 47, and she never knew I had Multiple Sclerosis. This was 15 years before I was diagnosed with MS, yet she’s been a constant companion as I’ve navigated my life in general and the challenges I face living with MS.
Throughout the past 25 years, I’ve drawn upon her strength and quiet grace when I’m feeling fearful and untethered. She wasn’t without her own challenges, and seeing her life through an adult lens has helped me appreciate how amazing she was. I was lucky. I had that special relationship of a mother and child where I felt completely loved and supported. It was so pure, it could embarrass me to have her gush about me to her friends. Yet I held an arrogant confidence that if ever my life fell apart, my mom would be there to help me and she’d be glad she could.
When she died, it was a glaring realization to me that the one person I felt completely at ease asking for help was gone. After my MS diagnosis, I felt like the one person I needed most and who would have been the most helpful to me wasn’t there. I didn’t realize at either time that in my 23 years with her she’d become someone who would continue to inspire and guide me throughout my life. Her physical absence was real, but her strong presence in my thoughts gave comfort and pushed me to continue learning, living and connecting when so much was uncertain.
I have a lot of wonderfully kind, compassionate and supportive people in my life, and they help me through so much. At times they treat me in a way that resembles the unconditional love and compassion I felt from my mother. I’ve had people make suggestions and show concern while worrying they’re overstepping the boundaries of our relationship. These instances warm my heart profoundly. They’ve shown me the capacity for kindness and generosity people have even when they aren’t responsible for my wellbeing. I could dismiss my mother’s influence as required maternal behavior. I’ve learned though that not all people are hardwired to give selflessly.
The act of supporting and comforting others is truly a thing to nurture and cherish. It lives beyond the moments we share and shapes our ability to persevere. My mother’s influence many years after her passing is proof for me. She continues to guide my actions, she inspires me to be someone who gives love and support, and she encourages me to live a life of contribution where I’m able. Her love endures as a fact of my existence and influences all I do.
Monday, April 15, 2019
I love being organized. I love containers and labels. I love having my finances organized and being able to find paperwork when needed. It brings me a sense of peace to plan things, be prepared and know what to expect. When everything has a place and is put away, it brings me joy. Living with a chronic illness like Multiple Sclerosis can be the exact opposite of that. It’s unpredictable, it disrupts plans, it can be invisible, and often it doesn’t have a logical reason behind the symptoms it brings. It can be manageable, but it’s not curable. Unlike my belongings, it can’t be fixed and controlled.
I know not everyone shares the love of organization that I have, but I promise you that small efforts into organizing tasks, time and belongings can make any person’s life less stressful. When keys are put in the same spot each time I get home, I don’t spend any time looking for them when I’m rushing out the door. When household goods like toilet paper are purchased before I’m down to the last roll, I don’t need to make a special trip to the store when I might be tired from a long day or experiencing MS fatigue. When I fill up the car’s gas tank when it’s half full, I won’t be late for an appointment because I needed to refuel on the way. If I bring snacks and water when I leave home, I’ll spend less money stopping somewhere to get them and I can control what I eat or drink. I have the option to get something different, but I won’t be forced to have something I don’t want. It takes less energy to stay organized than it does to deal with the chaos disorganization can cause, and putting effort into organization helps me live with MS fatigue with a semblance of grace.
My days rarely go as planned. There’s always something that comes up, and if I allow time for emergencies or unexpected opportunities, I’m less likely to get stressed about it. When my finances and home life are organized, I’m better able to roll with inconveniences instead of them disrupting my entire schedule. With MS, having an exacerbation can put everything on hold. Needing to schedule doctor appointments, get daily steroid infusions to calm down the immune system, travel to clinic appointments, and focusing on recovery becomes a priority. Everything else gets pushed aside. If I’m not organized, it can be costly and chaotic. Bills paid late can incur interest and late payment fees. Missed deadlines can create consequences that increase stress even more. Stress can contribute to MS exacerbations and symptoms, and it can become a downward spiral for our health.
But it’s hard to get organized in the first place.
I’ve had my share of shame surrounding disorganized papers and things in my life. When I inherited decades of paperwork from my mother after her death, I kept a lot of it in the attic. When money was short, it was hard to stay on top of financial paperwork. As time passed and I lacked a good organization method for new papers coming into my home, the boxes of paperwork stored in the attic grew. These boxes held unimportant paper along with important documents and possible treasured keepsakes. The idea of going through all of them was overwhelming and easy to ignore if I didn’t venture up the drop-down ladder to the attic.
Along the way, I bought a book that guided me through tasks to complete to become financially organized. It had assignments to do each week and promised complete financial organization within a year. I followed it diligently, and the papers in my home along with my financial tracking became something of beauty to me. The boxes in the attic remained untouched.
Then I moved, and something needed to be done. My new home was one-fifth the square footage of my old place. I was embarrassed that I didn’t know what was in the boxes, nor could I recycle or trash them without going through them. Luckily, I had two friends who never judge me poorly and are extremely generous. They offered to help, and I’m so grateful that I overcame my embarrassment and accepted it.
I think there were about 30 boxes that we took directly to a friend’s garage. The following Friday night, we met for dinner and afterward each brought a martini to my friend’s garage where we spent five hours going through boxes. My instructions were to sort through things into recycling, donation, trash and keepsakes. We would identify anything that might look important and hold it up so I could say whether I wanted to keep it or not. As stressful and overwhelming as the project seemed to me to do alone, it ended up being a really productive and fun evening. We laughed over old photos, drawings and notes, and we told stories about ourselves. By the end of the evening, we’d whittled the number of boxes for me to keep down to five that could fit into my new place and be dealt with another time. That weekend, we took the paperwork to shred to a local free shred event, and we dropped off items for donation at a local charity. Trash was picked up with the garbage within a week. What would have taken me months to go through and caused a lot of stress became an opportunity to connect with friends and make a fun memory.
For tasks that need to be done regularly, I prefer to do them throughout the week. Growing up, my family’s method for cleaning the house was to do an all hands-on deck cleaning session once a week. Sure, we cleaned up the kitchen each night and tidied up after ourselves, but a full-home clean would take a few hours each Saturday morning. I hated it. It felt like punishment, and it had to be done before we could do anything fun. I learned years later of a method where cleaning could take 15 minutes per day, and I joyfully converted my approach. Now I use that method for a lot of things I need to do. I don’t combine everything into one session; I split up chores into small fairly quick tasks. Some are maintenance done daily or weekly, and others are done monthly, seasonally or yearly. I wish I had a cleaning person, but for now I don’t feel comfortable with the expense. With this approach, I’m able to keep my place tidy and company ready within a few minutes. This works well with my MS fatigue issues, since accomplishing something in 15 minutes and resting is doable. Saving it to do all at once can be exhausting, it might limit my ability to do anything else that day, and it might require recovery time beyond the one day.
How to get organized: There are lots of good reasons to be organized, but that doesn’t always lead to action. I like the specifics of what I can do to make my life easier.
- Enlist help. This is especially useful for big projects that only need to be done once.
- Break up tasks into small and consistent routines. Success builds on success.
- Do one thing at a time. Don’t worry about everything, just focus on one thing to improve. Getting overwhelmed will just lead to inaction and no improvement at all. Any improvement is better than none.
- Cleaning in five to 15-minute spurts rather than long sessions can accomplish a lot while accommodating fatigue issues.
- Pick the one thing that causes the most stress and focus on how it could be streamlined. The library and internet offer a wealth of suggestions and resources. Find one that makes sense and try it. Keep it if it works, and try something else if it doesn’t.
- Consider organization as a lifelong component of living well. It might take five years to get each aspect of a life more organized. As life, health and obligations change, so will our organization methods.
Having control over things in life builds confidence and eases stress. Chronic illnesses like MS can be unpredictable and suddenly disrupt our plans significantly. Being organized with belongings and doing tasks as part of a routine ease stress. Knowing what needs to be done and where to find things makes it easy for friends and family to help us when called upon. Tasks become more difficult when we don’t feel well, and being organized can allow us focus on our health and recovery. If things are organized and planned, then impromptu things don’t worry me. I can add them without overloading myself. I know for certain that being organized enriches my life and allows me to say yes to more experiences.
- For information on my financial organization, see Rethinking Wealth & Organizing for Financial Wellness
- For my organization methods, see my post Make Life Easier to Get More Done and Lessen Stress
- For how I prepare and organize for neurologist appointments, refer to Getting the Most Out of My Neurologist Visits