Wednesday, July 11, 2018
Sometimes feeling crummy and being overwhelmed makes a person forget to do things that didn’t take any thought when they felt well. It’s natural to focus on what’s wrong and stop thinking things are funny. It’s easy to let the hard things override any impulse to be lighthearted.
I haven’t really found a way to laugh at my MS symptoms. They’re inconvenient and sometimes debilitating, they’re an indicator of how much damage my MS has done, and they’re scary for the damage that may be yet to come.
I can be angry, resentful and sad; I can also laugh. And I laugh a lot. I mean a lot. It helps me to approach adversity with resilience, rebellion and humor. Seeing the ridiculous in everyday life helps build compassion for our natural human reactions and build a kinship to others. We’re all complex in our feelings, reactions and beliefs, and when we laugh together we’re bound together in that moment.
It’s interesting how something said by someone who loves and admires us can be seen as hilarious, and the same words said by someone who doesn’t respect us or isn’t rooting for us is a slam. It all depends on the context and person behind it.
What’s my self-talk? That’s as important or maybe even more important than what our friends and family say to us.
Am I doing the equivalent of humble bragging when I poke fun at myself? Am I genuinely finding my condition or behavior funny from a place of compassion and love, or am I putting myself down and hoping someone will reassure me? If I resent my body or condition, it ends up being sad and not funny.
I think jokes about our physical appearances, limitations and things we really have no control over usually fall flat. Jokes about our behaviors that we have control over can be hilarious, but they need to come from someone who is clearly a fan. Otherwise it’s a dig and uncomfortable.
It’s occurred to me that if I have too long a span between belly laughs, I better find a way to do it. Not because it changes my situation, but because it feels like it changes things. A belly laugh is an immense boost. Letting loose, guffawing and snorting with laughter makes everything seem better. Laughter has been shown to relieve stress and help us tolerate pain better.
Gratitude is a wonderful action for feeling better, and it gets a lot of air time. But sometimes sincere gratitude doesn’t make me feel better. Laughter can be hard to drum up, but it’s usually easier to trigger.
We don’t need to laugh at ourselves or our illnesses to feel better. Give me babies giggling, clever wordplay and ridiculous situations that show how goofy we can be. Being silly, dancing or singing karaoke can make my stomach sore from laughing so hard.
It doesn’t remove my fears or change my future, but it distracts me, bonds me to others, reminds me how fun life can be, and just makes me feel good. Laughter is among the things that make life worth living, and when living with a chronic illness we can use all the help we can get.
Saturday, June 9, 2018
In 2014, I visited France for the first time. I went to Sainte-Chapelle at the recommendation of a neighbor who raved I needed to go when I visited Paris. It was incredible. The gothic architecture of the building relies on a web of supporting arcs that creates a pattern like no other I’d seen before in real life. It was awe-inspiring. I’d been told the main floor was beautiful and the upper floor exponentially more incredible.
|Upper Floor Sainte-Chappell, Paris|
At the time I recall there was construction and signage indicating only one way to access the upper floor. As I climbed the tightly curved, narrow and steep stairway, I experienced a visceral moment that had me choking back a sudden sob. My thoughts flashed to friends with mobility issues that would not be able to navigate this route. I realized that this is something that someday I will not be able to experience. In that moment I felt profound grief for what I haven’t yet lost - the ability and freedom to go anywhere without my body limiting me.
In that moment, I told myself to pull it together and let my sorrow sit for another time. My neighbor was right. The upstairs chapel was breathtaking. I was there, and I was fortunate to be there.
It hit me hard that I should think realistically about the things I want to do in my life that I may not be able to do someday as my Multiple Sclerosis is likely to progress. It motivates me to figure out what discourages me from doing things now and what I can do to accommodate my desire to travel and spend time with faraway friends.
If it’s money, I look at if there’s a way to do it that would cost less. If it’s time, I look at ways to adjust my schedule and streamline my commitments.
For my MS symptoms, I look for ways to make travel easier and less disruptive to my good health habits. I pay attention to what takes effort. I anticipate what would be difficult as my limbs lose strength, agility and endurance. I notice what causes me stress, because being anxious takes a lot of energy that I don’t have to spare. Trying to remember what needs to be done or if I did something can get exhausting. MS Fatigue sometimes discourages me from even attempting things that are a change of routine.
I tackle the challenges of my invisible MS symptoms from a lot of different angles. Lists help me immensely to eliminate wasted effort on tasks I need to do every time I go somewhere or do a specific activity. I streamline my self-care routines so that I’m able to do them when away from home. Simplifying what it takes to pack and leave my home vacant lessens the stress and effort it takes to get away. I pay attention to air travel restrictions, schedule travel to minimize disruption of healthy habits, and bring snacks that don’t sabotage my dietary preferences.
Create Reusable Lists: Minimize the decisions needed to pack and get out the door. Make sure the lists are easily accessible and add to them each time they’re used:
- Packing lists for clothing, medications, toiletries, and makeup so that I won’t forget important things that would be difficult or time intensive to replace away from home. Look at the list when I come home, add what I needed and didn’t have, and subtract what I brought and didn’t need.
- Leaving home list: What needs to be done to close up my house and be gone? Mine includes fill up the car’s gas tank, take out garbage/recycling, change sheets, do laundry, close windows, tell neighbors, confirm toilet isn’t running, turn down thermostat, turn off Wi-Fi, water plants, and have food in the pantry and freezer ready to cook quickly and eat.
- Coming Home list: My list includes turn on router/Wi-Fi, pull food from freezer, tell neighbors I’m home, check the thermostat and unpack.
- Activity lists for hiking, swimming, biking, jogs/walks: I have some dedicated bags with everything I use for a specific activity. For swimming, I have a bag with a towel, goggles, swim cap, ear plugs. For quick hikes I have a backpack with pepper spray, multitool pocket knife, wet wipes, and a ready to fill water bag. I have a hiking list to help me pack my backpack quickly and not worry about forgetting anything when I decide on an impromptu hike.
Streamline my home life and self-care routines so that how I live at home easily adapts to being away.
- Keep makeup and toiletries minimal and store them in cases that I grab and go.
- Use online banking and stay current with bills so that I don’t have a huge amount of work to do before I can leave.
- Organize medications and supplements in single serve packaging that’s ready to take with me.
- Create a daily fitness practice that includes stretching and strength movements that can be done anywhere and don’t rely on equipment, location or good weather.
- Have snacks on hand that meet my dietary preferences and I can bring with me.
|Medications and Supplements - one week's worth|
Know the rules for flying and getting through TSA. For a long trip, my injectable medications can take up the entire allotment for carryon liquids. When I took a 3.5-week trip to France, my daily injections took up the entire quart bag a person can carry on a flight. It can’t be put in checked luggage, because it needs to be kept between 59 to 86 degrees Fahrenheit. I also can’t risk having my luggage lost and doing without my medication. I planned ahead and put all of the rest of my toiletries in my checked baggage. Guess what? My luggage was lost and traveled to two extra cities. I had to make do without my luggage for three days. During that time in the middle of summer, I’m sure my luggage endured temperatures outside the acceptable range. I also had no guarantee that my luggage would meet up with me again. Because my medication was in my carry-on bag, I at least didn’t need to worry about doing without and thousands of dollars’ worth of medication going to waste. Luckily, I was with my sister who loaned me clothes and toiletries until my luggage was delivered to me.
My supplements and pills are put in small baggies labeled AM and PM. I really don’t like pill boxes since they’re bulky, and they usually only hold enough for one week. With single serve baggies, I can easily take one to breakfast and take them with food. It’s much more convenient and discreet than bringing a large pill container in my purse. Because I worry about TSA not liking that my medications aren’t labeled, I pull the labels from my prescriptions and put them on an index card to include with them.
Scheduling: To make sure I don’t skimp on sleep, I’ll schedule full travel days instead of taking the red eye. No longer will I get up super early in order to avoid “wasting” a vacation day. It works best for me if I schedule a day off at home to prepare for the trip before I leave and another the day after I get home to recover and readjust to home life before going back to work. It feels indulgent, but it makes for a trip that won’t overtax my energy and is less likely to trigger an exacerbation. It’s also allowed for breathing room when my flight was delayed a day due to weather. The cushion day allowed me the luxury of not disrupting or missing work obligations. Even more importantly, it eased what could have been an extremely stressful experience that makes my MS symptoms act up.
Being responsible for my health takes a lot of effort. When I’m experiencing MS symptoms and feeling like things could take too much effort, a streamlined and organized life will help me be less likely to say no. I need to be strategic about what I do, how I do it, when I do it and how fast I do it. I won’t have the energy to muscle through things and recover afterward without consequences.
I’d love to be low maintenance, but I’ve found my health does better when I pay attention, plan ahead, budget my energy, and build in rest and recovery. All of that requires an embarrassing amount of attention and planning. I get irritated with myself that I’m so high maintenance, but I didn’t cause my disease. It takes what it takes to stay healthy and participate in life. All of this effort eases my stress level and makes it possible for me to change my plans when opportunities present themselves.
P.S. I’ve since learned that since the renovation efforts, the upper floor of the Sainte-Chappelle is accessible for people with disabilities via an adjacent building with an elevator and ramp. I’m glad for the efforts of many to make historical places accessible to and enjoyable by all people, whether it’s accommodating mobility, hearing or visual impairments.
Sunday, May 13, 2018
Living with an illness with no proven cure leads me to treat myself as a guinea pig. I read about the latest studies and breakthroughs for MS and auto-immune diseases. I seek recommendations from people that are managing their health well. I compare what I’m doing to the treatment and see if it makes sense for me. If the risk is low and I’m not doing it already, I’ll give it a shot. It’s a very unscientific approach. But given I’m bumping up against an unknown date when my MS could progress, I’m not willing to wait until all the studies are in when it could be too late for me.
I’ve tried eating vegan, vegetarian, gluten-free, dairy-free, low-fat, and paleo. I’ve followed the Wahl’s Protocol, the Auto-immune Protocol, and elimination diets. Some of these personal trials helped, and some didn’t. Over the course of a couple decades of trial and error with my food choices, reading everything I can find, and obtaining the guidance of a naturopath to help me develop my dietary choices, I’ve found a good mix of dos and don’ts to follow. It’s one that I can maintain, and it seems to be working.
All this is in addition to following my neurologist’s recommendations to take a disease-modifying medication (suppress my immune system to reduce the frequency of relapses), eat healthy, rest, exercise, sleep and reduce stress.
In the United States, until something is FDA approved and a standard recommendation from our providers, it’s considered alternative when used in place of conventional medicine and complementary when used in addition to standard treatment options.
My food choices are a complementary treatment to my MS Neurologist’s treatment advice. In the past when I’ve brought it up to him, he’s been skeptical of the benefits of special diets beyond eating healthy per USDA guidance. He also doesn’t see the harm so long as I’m getting adequate nutrition. I think it’s been a big part of managing my MS well. This approach is validated more and more each day as studies show a connection between good gut health with the right mix of bacteria in the intestines and better health for all people, not just those with MS.
I’m closely watching advances in stem cell treatments whereby people with MS undergo stem cell transplants to reboot the immune system. People are getting the treatment by participating in studies, traveling to foreign countries, and initiating GoFundMe collections to pay for the treatment. Some have reported great improvement while others have found no change. For now, it’s an alternative or complementary treatment. Hopefully someday in the not too distant future, it continues to provide success for enough people and obtains approval in the US to become available as a standard treatment option. With continued studies and willing participants, I’m optimistic it will happen. From groups on Facebook, I’ve read from those that have had treatments that stem cell treatment is something that is not a one-time cure for MS. So far, it’s a method to slow progression of MS for people. If the medication I’m taking wasn’t working for me and I qualified for a trial, I would consider this treatment.
With any self-care, it’s important to tell your care providers what treatments you’re doing. Supplements are easy to self-prescribe, and it’s good to have lab tests done to see if any blood levels are outside of normal levels. Some herbal remedies may counteract medications you’re taking.
If my provider isn’t on board with a treatment but it’s not dangerous, I’ll make it clear it’s my decision whether or not to continue non-conventional treatments. It’s uncomfortable for me to go against my doctor’s recommendation, but standing firm and owning my treatment decisions is a good skill to cultivate. I’m the one who will live with the consequences, and my comfort level with the risk is ultimately the one that needs to prevail.
Sunday, April 15, 2018
Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It's rough. It can make me grouchy and impatient. But it's not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I'm tired and feeling crummy, but it's a tremendous life skill to cultivate. Sometimes I succeed, and sometimes I fall short of my goal. When that happens, I follow up with that person and try to repair any damage.
I’d rather people support me because they want to be there with me. If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction. No thank you.
Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing. And being treated like a burden isn’t fair. Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.
My best relationships are those of mutual admiration and appreciation. We help each other often, but we make sure we respect our limits so that nothing is done with resentment.
I’ve put together some guidelines for myself to build healthy and positive relationships:
1. When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
3. Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship. Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
4. Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
5. Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
6. Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
7. Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.
Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept. Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.
Sunday, March 11, 2018
Managing MS relapses can mean different things to different people, and success varies immensely depending on how long you’ve had Multiple Sclerosis, the symptoms you experience, your level of physical ability, your disease course, and your expectations. When I think of managing relapses, I think of treating, avoiding and learning from them in order to slow disease progression and reduce the justifiable fear that comes each time one occurs.
- We can treat relapses to try to shorten the duration.
- We can try to avoid relapses with lifestyle and medication. This is an idealistic goal and may be possible, but it places a lot of blame or praise on the person with MS. It’s a pass-fail test that doesn’t necessarily correlate with how well a person manages their health.
- We can learn from relapses each time we have one to better understand how our body works.
- We can work to manage the fear that comes with relapses and disease progression. This part holds a lot of mystery and is sometimes the most difficult part.
Managing relapses at that time meant figuring out when I was having one and trying to stop it once it started. It took learning about MS symptoms and paying attention to how I felt. I compared how I felt to my MRI scans and neurologist’s assessment in order to know whether or not I was having an MS exacerbation. Steroid treatment was done to try to stop relapses. Because my biggest symptom was fatigue and I had no way to objectively measure it, I lived in a fairly constant state of fear and self-doubt. What got me through was a belief that I would get through this phase and learn what I needed to know to live with MS. I didn’t know how, but I trusted it would happen eventually.
At six years past diagnosis, I experienced an MS milestone. I achieved a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity.
I attribute this MS milestone to constant monitoring and self-assessment. After a relapse, I would consider what helped and what was hard about it. I’d speculate on what would have made it easier and how I can prepare for the next relapse. I’d think about how it felt, and I’d try to match up that feeling to my test results. When I felt poorly but wasn’t having a relapse, I’d use that information to learn what is normal for me. Knowing that helped me increase confidence and lessen my fears.
There’s so much to learn about MS, relapses and how your unique body behaves that has no prepared reference manual or shortcut around education and effort. It’s a moving target since our bodies are aging and old damage can cause new symptoms. There is no one proven or best way to manage health to avoid relapses. Monitoring your health, learning all you can, and trying things to see what works helps build self-confidence. Understanding how MS affects a body in general and yours specifically helps reduce the fear of the unknown. Reducing fear can make every aspect of living with MS more bearable.
People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen.
For my post on When is it an MS Exacerbation, click here.
Wednesday, February 28, 2018
I wrote a post last month describing my frustration at receiving a call from my pharmacy saying my health insurance coverage would no longer cover my main MS medication. If you’d like to read Part 1 of this story, check out Necessary Medication and Politics: The Devastation Falls on Patients.
Here’s part 2 of the story: Today during my lunch hour, I spent 40 minutes on the phone plodding through a total of five phone trees that required me to enter my address, phone number and date of birth repeatedly. I explained my situation to four different customer service representatives of my health insurance, pharmaceutical coverage, specialty pharmacy (for specialty drugs which are what the super expensive medications are called), and finally specialty medication coverage. The final verdict is good for me. My medication is covered. I’m told I now have a lifetime approval for the medication. Lucky me. Let me repeat this, because I say this in all earnestness: I am lucky.
I know others aren’t as lucky as I am. The success I’ve been able to achieve in this round does not mean our system is okay. It doesn’t mean I won’t experience this in the future for other medications or treatments. This medication is not likely to be effective for me forever. There are other medications that I can try when this one stops working, and I could need to go through this again. It’s complicated, scary and frustrating to have our health riding on an unpredictable and evasive system. It causes me heartbreak each time I see someone advertising a Go Fund Me campaign to help someone with medical expenses.
This time, it worked out for me. There are others that either aren’t successful in navigating the system or just can’t prevail even though they’re dogged in their efforts. If you don’t have any health issues, please see yourself in me and in others that do. We don’t cause our conditions, and we’re not sick because we deserve it. It’s the luck of the draw sometimes, and it can happen to anyone.
Please know how important it is to support pharmaceutical reform – In the US, the costs of old medications continue to be astronomical because the market and insurance companies allow it. I truly believe we will not have good health coverage in the United States until we address these out of control costs that benefit stockholders and those in high-ranking positions in pharmaceutical companies.
I’ll share the details of my experience subsequent to my last post on this subject for those that are curious.
I waited until after my neurologist appointment and MRI results to make the call to my insurance provider since I wanted to make sure that I should continue my existing medication. I’ve taken this medication six of the last eight years, and my latest test results indicate that it’s working for me. The best I can hope for with this medication is that it suppresses my immune system and it reduces the frequency of MS exacerbations for me. It’s called a disease modifying drug (DMD). With my DMD and lots of lifestyle and nutritional choices, I believe they’ve helped me reduce having three exacerbations per year to having none in six years.
After the call telling me it was denied and no longer covered, I contacted my pharmacy and neurologist’s office. I asked my neurologist to find my old appeal letter and send it again to my insurance provider. I asked them to contact me if they needed anything else to help reverse this decision.
A couple weeks later, a nurse from my doctor’s office called. She said it was resolved and I was covered. The same day I received a letter in the mail from my insurance company saying my appeal was canceled with no explanation.
Today I made the call to see what the final answer was to figure out where I stand. As I said at the beginning, it was a forty-minute call that took a lot of patience, persistence and good communication skills to navigate the system. It may not seem like a lot of time, but it’s a frustrating process with lots of wrong answers along the way. Each time I was given information I knew was mistaken, I explained yet again what I knew to be true and requested a reliable verdict on my case.
The representative said that I do have a lifetime approval for my preferred medication. I am relieved and very aware of how lucky I am.
Tuesday, February 13, 2018
I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest. My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be.
It’s reasonable to limit activities when you have health issues. Addressing nutrition, rest, fitness and overall wellbeing is a full-time job. Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen.
Doing things outside of my routine usually involves budgeting my energy leading up to and following the event. The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision. It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health. They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves.
I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim. Feeling like that is depressing. Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment. It adds to a sense of strength and empowerment. This is one area of life where I think one can help offset the other. It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before.
It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot. I bought it and planned going with a friend. Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time. I went on to do the trapeze class, love it, and go back many times. I tried it, succeeded, and built up my physical confidence.
Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment. There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me. Picture this: I enter a hotel ballroom where only two tables have people sitting at them. One table with ten place-settings is full. The other has eight twenty-year-old Japanese students. With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could. I sat down, and then the other tables filled up around us. I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English. I don’t speak any Japanese. I conversed with the one young man about professional topics to find some commonality. While I did, it was clear the rest of the men were commenting about me and laughing at me. They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table. My guess is the time at that table was only about 30 minutes, but it felt like hours.
Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster. But I hold it up as a benchmark experience. It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction. It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be.
This experience helped me build my social and emotional confidence. Trying trapeze helped me with my physical confidence. Both of them reduce the chance that someday I’ll have regrets for what I didn’t try. Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward. That reward may be for accomplishing it well, and it may be for just enduring and surviving. Either way, we win.