Do you ever find it difficult to find happiness in the midst of hard times? Even in the face of adversity, having a mental list of simple behaviors to try out every day may help you feel happier. You might find that doing something as easy as listening to music improves your mood and helps you on your journey to finding joy in life.
Whatever joy means to you, you may tap into it in surprisingly easy ways, even when it’s tough to remember what it’s like to be joyful.
So, here are 3 easy-to-implement suggestions for finding joy in life during challenging circumstances.
1. Find the things in life that make you happy, and then do them.
2. Always take a moment to express gratitude.
3. Stay connected to the good relationships you’ve established in life.
Remember friends, do what brings you joy. Demonstrate thankfulness. And stay connected to your relationships. You are amazing, and you can do this!
Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Luis Aparicio of Dallas, TX:
As a result of the pandemic and of being more aware of my surroundings, I have found a new love for gardening. This is what happens when you are spending more time at home and taking stock of your environment. I see my growing love of gardening as a metaphor for what has been going on over the last year and a half and how so many of us are looking in our own backyards (actual or virtual) for joy, comfort, and beauty.
I started tackling a very large project in the backyard feeling underprepared and overwhelmed. Landscaping has not been a love of mine in the past, so I was approaching this large project as a novice. Questions filled my mind including: How long would this project take? Do I have the time to accomplish the task? What expertise do I need to select plantings properly? And will the project be a success? However, I was determined to dive in and create a beautiful rose garden that would provide endless beauty and delight to my family.
I decided to take the project one small step at a time giving myself adequate time in between to rest, reflect, and approach the project each time with a renewed sense of excitement. There were days when the task was daunting and times that I truly believed that my vision would never be realized. But bit by bit, square foot by square foot, I removed all the brush and got down to beautiful brown dirt. At this point, I had removed all the distractions and was down to a blank slate. I now had the opportunity to decide what I wanted to plant. I had eliminated all the backyard clutter and arrived at a space where there were endless possibilities.
I chose all roses including yellow, white, pink, red, and multicolor for my planter. I then built a rock wall around this beautiful new area to preserve the work that I had done and highlight the beauty of the arrangement. When I stepped back and looked around, I was proud of taking on such a large project, getting way out of my comfort zone and trying something new.
During these challenging times, I have spoken to so many who have found ways to look into their own metaphorical backyards, clean out clutter, and plant new ideas. That introspection and re-evaluation is never easy. It often pushes you out of your comfort zone, but that is where new growth is planted and thrives. We have all needed to adapt, re-evaluate, reflect, and change. Approaching a project that will both challenge and delight you can be a transformative experience. Mine centered on gardening. Your project could be much different but still lead you to a new sense of accomplishment. I only offer the suggestion that you give yourself time to advance and rest. Both are critical when traveling your journey of discovery.
I hope you will all find delight in tending to your own gardens whether that may be physically, virtually, mentally, or spiritually, and I hope you enjoy the fruits of your labor and learn as much as I have.
*Gina Ross Murdoch is a seasoned executive in non-profit management and has served as MSAA’s President and CEO since 2016. Her career includes leadership positions with chapters of the Leukemia and Lymphoma Society as well as the American Diabetes Association. Earlier, she spent 14 years overseeing development activities at a large chapter of the National Multiple Sclerosis Society, leading explosive growth initiatives and ground-breaking strategic projects. You can contact her at president@mymsaa.org to share your thoughts on how MSAA is improving lives today, or to learn how to get involved in our mission.
After a long and possibly pain-filled day, what anyone with MS wants is to fall asleep. But sleep is often difficult to achieve. For many people, the pain of MS either gets worse at night or fails to quiet down, keeping them awake.
This is called painsomnia. To find out more about how it shows up for folks in the community, we reached out on the MultipleSclerosis.net Facebook page and asked: “Have you ever experienced painsomnia (the inability to sleep or rest because your body is in pain)?”
More than 400 community members shared. Here is what they said about how and where painsomnia affects them.
Every night
The most common response to our question was that people deal with painsomnia every night. It is an ongoing problem that makes bedtime a dreaded event – and the stress of that can make falling asleep even more difficult.
“Every night I feel pain in my feet. I do not know if it is neuropathy. But it feels like if I move my foot, it would break off. Why does it happen when I lie down to rest? All my joint pain intensifies. I feel numbness, too. Most nights it is 2:00 or 3:00 AM before I can go to sleep.”
“Yes. Every day for the last 2 years. It is oppressive and miserable!”
“Every. Damn. Night. My legs and feet hurt the most. This last year or so, I have started waking up with 1 or both of my legs numb from my hips to my toes. My hands go numb every night too. Bedtime sucks.”
Only some nights
For others, painsomnia only happens on some nights. Some people explained that it can actually be more of a challenge to tackle this problem if you do not already have a routine or treatment in place.
“Some nights more than others!”
“Yes! Just last night. It does not happen often.”
Cannot stay asleep
Many people in the MS community shared that while they can fall asleep, this pain wakes them up in the middle of the night. After they are awake, the pain makes it so they cannot get back to sleep.
“I sleep for very little time, and I am awake by 5 am every day.”
“Yes, all the time. I have been up since 2:30 AM from pain, along with the MS hug this morning.”
“Yes, I cannot stay asleep, which just adds on to the MS fatigue.”
Mostly in the limbs
The overwhelming majority of people who responded said that they feel the pain in their limbs – the arms, legs, hands, wrists, and feet. The pain can show up as a burning feeling, numbness, or even spasms.
“Arms, hands, and spasms in my legs. Usually 2 to 3 hours after lying down.”
“Burning pain in my right hand/wrist/arm/shoulder.”
“Yes, mostly from leg cramps and bad back pains, but also it just hurts all over.”
“Mine is numbness and tingling in my arm.”
“Usually in my one heel, but recently it has started in my hands.”
“My legs and feet hurt the most. My hands go numb every night, too.”
Shows up as pain where lesions are
The second most common response was that the pain appears where lesions are. MS lesions often show up as scarring around the central nervous system, including the spinal cord. It makes sense that people with MS can feel that burning and tingling pain in the neck or back.
“I feel it in the top of my neck, where I have a large lesion.”
“Yes. Back pain where my lesion is. I cannot stand it.”
Did not know it had a name
We cannot heal what we do not recognize. Many respondents did not know that there was a name for sleep issues due to the pain of MS. Sharing our experiences helps others know they are not alone. Realizing painsomnia exists is often the first step toward reclaiming a good night’s sleep.
“Just about every night, but I did not have a clue it had an official name.”
Baked Parmesan Zucchini Rounds are a great way to use delicious summer zucchini! I have a gardening plot in my hometown community garden and my zucchini are thriving.
This simple side dish is quick and easy and requires only 2 ingredients!
Ingredients
2 medium-sized zucchinis.
1/2 cup freshly grated Parmesan cheese
Garlic salt and freshly ground black pepper, optional.
Instructions
Place oven rack in center position of oven. Preheat to 425°F. Line a baking sheet with foil and lightly spray with cooking spray like PAM.
Wash and dry zucchini and cut into 1/4-inch-thick slices. Arrange zucchini rounds on prepared pan, with little to no space between them. If desired, lightly sprinkle zucchini with garlic salt and freshly ground black pepper. Use a small spoon to spread a thin layer of Parmesan cheese on each slice of zucchini.
Bake for 15 to 20 minutes, or until Parmesan turns a light golden brown. Serve immediately.
Living with MS can lead a person to avoid doing things outside of the routine. Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.
When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs.
What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up? What if I need something and I don’t have it or I can’t get it?
Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead. All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home.
You do you. If you don’t want to go somewhere or do something, don’t! But if you want to do some day trips and are feeling resistant, consider this:
Perpetual planning allows spontaneity to thrive. Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned.
Pack a day bag with personalized essentials to ease stress. The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks. Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
Set reasonable expectations. Overestimate travel time, and grant yourself permission to change plans.
Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed.
Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going. If it’s a trip to a view point, there might be clouds obscuring the view when you get there. Enjoy the journey, the people and doing something out of the routine.
Look for surprises, and be open to exploring them. Allow for impromptu diversions. Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive.
Use technology, but don’t get overwhelmed. Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination.
Talk to people. Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too!
Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later.
There’s always time for ice cream. Literally or figuratively, indulge and enjoy the trip!
*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/
I think it’s safe to say that this summer, so far, is shaping up to look a lot different than last years. Being in the height of the pandemic and COVID cases still on the rise at that time, the summer was just another period to get through living in a changed world. With individuals having the opportunity to be vaccinated this year, the summer months are being celebrated once again. And hopefully in a safe manner. For some this will mean getting the chance to travel again and thinking about their accessibility needs in doing so.
Traveling can be an exciting and exhilarating experience for those who enjoy it. So, making plans and preparations that will ensure the trip is a great one is an important step. For those living with a disability, having the right accessibility measures in place for travel is imperative. From the planning stages to the endpoint of the journey there are different factors to consider. The destination itself, the mode of transport, accessibility of sites and attractions, and accommodations are all elements significant to the plan. It can sound tedious and like a lot of work but making sure the trip will be safe and enjoyable is the ultimate goal.
For those making travel plans, COVID has unfortunately added another layer to the planning piece this season. Checking with destinations on their COVID policies and procedures and with the mode of transport you plan to take are additional steps now to ensure safety. If able, working with a travel agent for assistance planning your trip can help in this initial phase. For many destinations they have websites for visitors and tourists traveling to their area and offer helpful information and resources online.
If you plan to travel this summer, be sure to consider what your travel and care needs look like. Are you using a mobility device, do you need your accommodations to have specific accessibility features? Would you be traveling with medications and need documentation from your doctor? Are the sites you’re visiting accessible? What about restroom accessibility? Trails, walking paths, street and sidewalk access? Are you heat sensitive with your MS symptoms and need to think of climate? These are just some aspects to think of when making plans for your journey. It can be fun but making sure it’s also safe and accommodating for you is key.
Did you know that MSAA’s MRI Access Program provides financial assistance for Cranial and C-Spine MRIs?
MSAA’s MRI Access Program assists with the payment of Cranial (brain) and C-spine magnetic resonance imaging (MRI) scans for qualified individuals who have no medical insurance or cannot afford their insurance costs and require an MRI to help determine a diagnosis of multiple sclerosis or evaluate current MS disease progression.
What does the program offer?
The MRI Access Program helps financially with New MRIs and Past MRIs up to a maximum of $750 per MRI. So, whether you need help paying for future MRIs or if you are staring at an MRI bill you recently received in the mail. MSAA’s MRI Access Program is here to help!
How do I apply?
It’s simple! You can either apply online directly through our website or you can fill out a paper application and send it back via email, mail, or fax.
Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Karen Bloom of Kendallville, IN:
Multiple sclerosis (MS) often feels overwhelming at the time of diagnosis. Feeling powerless may be your first reaction. Yet, as you live with MS, you find strength and coping strategies.
Everyone needs tools for the journey. We recently asked the Facebook community, “If you could go back to the day of your diagnosis, what advice would you give your younger self?” We have compiled some of the shared wisdom below.
Get a second opinion
One important tip you shared was to see an MS specialist for your care. While your primary care physician (PCP) is a good starting resource, having someone who specializes in MS is vital. Specialists will be current on the latest research and are your best asset for managing the disease.1
“Get a second opinion with a doctor that specializes in MS right away.”
“I was referred and told it would be a 6-month wait by a doctor I respect. I turned out to be 9 months and worth the wait.”
Mental Health
Being diagnosed with MS can have a significant impact on your mental health. Having a chronic illness creates all sorts of turmoil as life and abilities change. Caring for your mental health at the outset of the disease helps you manage long-term.
“Depression has been harder for me than the MS! Get a good therapist and investigate the meds.”
“Mental health is just as important as physical!”
Treatment
The community also shared the importance of developing a treatment plan with your doctor from the start. Getting MS into remission and keeping it there involves making a plan and staying consistent with it.
“Get on treatment and STAY on treatment.”
“Start on relapsing-remitting drugs as soon as possible.”
“When you go into remission, be sure to keep taking your medication even if you feel fine.”
Move your body
Getting regular exercise helps manage MS symptoms. Gentle exercise can improve strength, mood, bowel and bladder function, and bone density.2 Many of you shared what a difference regular movement makes with this disease.
“Do the yoga, do it now and keep doing it.”
“Stay as active as you possibly can. Keep your muscles in shape.”
“Walk while you still can.”
Lifestyle changes
Living with MS involves adapting your lifestyle to accommodate the changes. Some of you prioritize your “bucket list” in the early years of having more stamina. You also learn to slow down and listen to your body to avoid exacerbations.
“Eat right. Stay hydrated. Stay away from stress.”
“Don’t try to get everything done before getting too fatigued.”
“Do whatever you dream of now because you might not be able to do so later on.”
“Be willing to adapt. Your future husband will NOT fold towels the way you do – and that’s okay, he’s trying to help.”
Keep living
One of the most crucial things you shared was focusing on enjoying life. Life does not end with an MS diagnosis. It will change, many days will be hard, and yet, as you reminded us, “Your disease doesn’t and never will define you!!”
“Stop worrying about what MIGHT happen and focus on the good in life.”
“Don’t assume you will follow the path of someone else; everyone is different.”
“It will be OK. OK may just look different, but it will still be OK.”
“You are still you and always will be. This is just a detour in your life’s journey. It is NOT the end of the road, but rather the beginning of a new one.”
