- The Coronavirus and MS: What You Need to Know, MSAA
- COVID-19 coronavirus and MS, MS Association UK
- What You Need To Know About Coronavirus (COVID-19), NMSS
Sunday, March 8, 2020
With the current coronavirus spreading, wellness is at the forefront of the news. I live in Washington state where the first confirmed cases and deaths from COVID-19 (the coronavirus) in the United States occurred. My neurologist’s office is in Kirkland, the epicenter of the US outbreak. We have a confirmed case in my community, and others are pending test results.
I’m writing this on March 8, 2020, and news updates are frequent. By the time I hit publish on this post, the status of the virus will have changed. The statistics change often, but the consistent message I hear is this: the virus is spreading; if it hasn’t reached your town yet, it will at some point.
The dynamics feel a lot like living with Multiple Sclerosis in general. I can stay as well as I can with nutrition, therapies, activity and good hygiene, but I don’t have complete control over my health. I will do my best by cleaning surfaces often, washing my hands, using hand sanitizer and most difficult of all for me, not touching my mouth and eyes. I’m searching the internet for reliable and MS-specific guidance, and I am happy to see some good resources that answered my specific questions. I need to do everything anyone else should do to avoid having the virus reach any point of entry into my body, and for now keep taking my disease modifying therapy. I will also weigh whether to modify my plans as the virus spreads. I can do all these preventative measures, and just like I might have a relapse due to MS, I still might get infected with coronavirus.
It’s interesting to me to see others (who presumably don’t live with a chronic illness) react to the health threat. I hope they don’t get infected, and I hope they endure and recover well if they do get infected. Their fear and concern for getting sick make me feel like they’re experiencing what I often experience living with MS. The uncertainty is stressful.
If they do get infected, I hope they aren’t blamed for not doing enough to avoid getting sick. I doubt they will, and I think some people would think it’s ridiculous to blame a patient. But when I liken this outbreak to having MS, I feel compelled to comment on the judgments I hear. In trying to compliment me on living well with my MS, sometimes people will compare me to someone they know with MS. They’ll comment that their friend, relative or neighbor isn’t doing very well, but they don’t take care of themselves. These are extremely well-meaning people who care, but I think they’re off-base. That person who isn’t doing well might not be able to take better care of themselves, BECAUSE they are having too many health challenges. And if they did have different health habits, there is no guarantee that they would be in better health. Sure, the odds increase, but there are no guarantees.
The community conversations surrounding preparing for the virus outbreak before it widely affects my community are heartening. I see offers to shop for and deliver groceries and supplies to our vulnerable friends and neighbors. I see people creating resources and networks available for anyone who wishes to avoid being exposed or who is sick and needs assistance.
I hope to use this as a lesson for myself to accept help if needed. I reluctantly admit I’m a bit independent and prideful, and I don’t often let those outside my close circle know when I could use some help. I’d rather do without and get through it. I know this frustrates my friends and prevents them from feeling of use. As I see my community rising to the occasion with this virus outbreak, I’m choosing to see this as an opportunity of connection. We’re in this together, and I will work on remembering that when the coronavirus threat is over but my MS is still with me.
For more information, I found the following to be helpful:
Monday, February 10, 2020
Experiencing life events and trauma can change a person. We all experience life milestones and challenges, yet they are so personal and timed differently for each of us that how we react or change is never the same. Losing a loved one or experiencing an illness is different when experienced as a child, a young adult or as an older adult. Our expectations and life skills are different at each point in our life, and what may be life changing for one may be life affirming for another.
As I reflect on how being diagnosed with Multiple Sclerosis and living with symptoms has affected me, it's difficult for me to separate it from everything else I’ve experienced in life. Generally, I think that having MS accelerated my aging and life milestones, but there’s no way to know since it's the only life I live. I think many of my qualities stayed consistent or amplified with age. There are two things though that rise to the top for changes I’ve noticed in myself since being diagnosed with MS. One is a deeper feeling of kinship, and the other is developing a lifestyle of nurturing my well-being and relationships.
Feeling Kinship with Others: I feel a kinship with others at a level that I didn’t know I lacked before my own diagnosis. When I see people with illnesses or medical devices, I see them now as someone I could be someday instead of someone separate from me with disabilities. I see their mobility devices as signs of strength rather than weakness. I’m embarrassed to admit it, but my old reaction was one of feeling a sadness and sometimes pity for them. After my MS diagnosis, I realized I was terrified of losing my mobility. I learned with time how much my identity and self-worth were tied up with my ability to be independent and be active. I also learned how much I still have to offer if I lose my ability to be mobile and independent.
I have since met quite a few people who rely on assistive devices and are not able to do all they did when they were younger. I’ve seen their illnesses lead to a progression from using a cane to walker to wheelchair. I’ve seen their gradual yet persistent lessening of muscle tone and ability to care for themselves. A few of my friends have passed away, and in their final months I’ve seen their bodies wasted to a level of frailty that seemed inconceivable to still supporting a person with clear cognition.
My internal reaction has evolved to a feeling of kinship and respect. My external reaction has grown to incorporate always asking before helping. With others, we often only know what we see or hear from them. Our assumptions of what they want or need are very often mistaken. When trying to be helpful, we often get it wrong. By moving a chair, we may be sabotaging their plan to use the chair as a means to get where they plan to be. In an effort to solve a problem we see, we aren’t aware of all of the other factors they consider in each decision they make. A denied offer to help is not rude. I see now how important it is to always respect a person’s independence, allow them to choose whether to accept assistance and honor their wishes.
Nurturing My Well-being & Relationships:
The other huge change in the me since my diagnosis is what I consider when deciding when to slow down, how I spend money, what I want to do in my life and with whom I want to spend my time. I still work hard and honor my commitments, but I also consider my health needs daily. If MS symptoms are acting up, I’ll take a hard look at my obligations and see where I can shift, delegate or complete tasks differently than I might prefer. It’s a very real decision for me to consider if pushing myself to keep working or being somewhere is worth potentially leading to an MS exacerbation and disability. I used to think work needed to come before my well-being and that if I could keep going, I had to keep going. This question is a good litmus test to help me make wise decisions for my health.
With my finances, I balance planning for the future while enjoying the present. I assume there’s not going to always be time or ability later, and knowing I’m embracing living now helps me believe I will look back on my life knowing I made the best decisions for my happiness.
I consistently give myself permission to try new things and enjoy life in every phase, because tomorrow my health may not allow me to do it. It’s possible I may get fitter or feel better than I do now, but right now I may also be the healthiest and most active I’ll ever be for the remainder of my life. I’ve learned to appreciate my body at both its most slender and curviest.
I now let having fun take priority over my reluctance to appear silly. I’ll dance or sing when I might not have before. Singing karaoke would have terrified me in the past, but I pushed myself and had a lot of fun. Photographs haven’t always been flattering, but I push myself to see them as proof I am enjoying life.
And then there are the people. Struggling with accepting my chronic illness motivated me to share more with people and ask more of them. I have relationships that have grown incredibly richer for my willingness to show vulnerability and accept help. I feared depending on people or showing weakness would lead to losing relationships and being rejected. I wasn’t wrong. I did lose relationships, and it was difficult, but the bonds that developed and remain are solid and fulfilling. I’ve found that the people who are good for us need to feel needed and trusted. When we withhold portions of ourselves, we keep ourselves from experiencing how good a relationship can be. I’m less likely to hide my flaws now, and it enriches my relationships. It feels good to embrace the aspects of my being that are less than perfect and own all of me.
It’s possible that with normal aging and without chronic illness I might have changed to tend to my own needs better and feel more connected to other people. It’s also possible I might have lived a long life without ever needing to change or learn more about others. Regardless, I’m happy with these changes, and I feel they help me cope with living with MS in a way that feels satisfying and right for me.
Tuesday, January 14, 2020
I’m turning 50 this year, and I’m excited. I have genuinely been looking forward to it for years. No exaggeration.
Approaching the half century mark is a big deal. Anyone who lives to age 50 will have experienced many joys and challenges. I think acknowledging the wonderful and terrible things we’ve enjoyed and endured in our lives is a worthwhile assignment. (See my post on My Life List.)
For me, living 50 years is meaningful, because it exceeds the number of years my mom and grandmother ever lived. It’s a life event I sometimes superstitiously wondered whether or not I would ever reach. Add living with Multiple Sclerosis, and turning 50 feels like a major accomplishment!
This year is my year to have 50 experiences of significance in my 50th year. They’ll include bucket list items, accomplishments and celebrations. I’ll share them and mark them with #50at50yrs on social media. If you’re turning 50 literally or in spirit, I invite you to join me in this challenge!
I’m filling my 50th year with travel, music, culture, learning and creating, and I’ll share it somewhere, somehow, at some point, by some form of communication or in-person interaction with everyone I care about in my life. I hope it will enrich my life by making memories, furthering my life goals, and nurturing my relationships and soul. The excitement of planning, experiencing and reflecting on these life moments will be worth cherishing now and reminiscing upon in years to come. Looking for things to celebrate will ensure I find them. (See my post on Finding What I Seek.)
A fun coincidence for me is that Multiple Sclerosis Association of America is also celebrating 50 years in 2020. I’m excited to be a part of their year-long celebration where they’re featuring 50 clients in 50 weeks with #MSAA50. These clients will share why they support MSAA and/or the MS Community. Check it out, and stay tuned for more!
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