When managing one’s MS, there can be many factors and elements involved in the process. All such journeys are different, and each person’s experience with MS is very unique. This makes it difficult at times to compare and help navigate its course and impacts. Its unpredictable nature can cause challenges in finding ways to help manage symptoms and disease changes. But there are so many different types of support, treatments, and strategies in place nowadays. Experiences can be shaped and influenced greatly.
There’s no doubt that the winter months can be dreary and feel long-lasting. That’s what many across the country are currently experiencing these days. From treacherous weather to isolation still occurring because of the pandemic—feeling trapped is a universal experience we’re sharing during this time. So, what can we do to stay occupied and busy so that the time goes by a bit quicker? If we’re all feeling isolated, at least we’re all together in that too.
There are several different activities that can help to keep us busy, and playing games is a good one. Whether it’s playing a board game with others in your household or playing card games or online games if you live alone. Games can be a fun way to pass the time, and there are so many varieties out there to choose what’s most engaging for you. It can also be a fun way to interact with others virtually or meet new people.
Crafts is another way to stay busy. Though not everyone is into crafting and may not find it fun or interesting, a lot of people do. And again, there are so many ways to do it. Painting, collaging, drawing, building things, knitting, sculpting, etc. There’s no wrong way to craft, especially if you find something you enjoy doing. Reading is another popular pastime. Some enjoy this, and while it may not be others cup of tea, it’s an option for passing the time during these long winter days.
Watching movies and shows is a good default for staying occupied too. With so many streaming services these days, it’s not hard to find something that grabs and keeps your attention. Engaging in online groups and community forums can help the time pass too. This can also keep the door open for communication to help reduce feelings of isolation. We don’t have to go through these gloomy winter days alone.
Living with MS is a unique and different experience for each person it affects. No two people will have exactly the same symptoms or disease course, but many still find commonalities in their experiences and feelings when it comes to the condition. MS tries to bring a lot of baggage with it, but many find ways to cope and manage the disease in their own way that works for them. This is done with the help and support of healthcare professionals, family, friends, and others in the MS community. As we focus on some of the ABCs of MS this month according to each person’s view of it, I’ve highlighted some factors I’ve seen relate to MS below.
A: Some of the A’s I’ve seen correlate to MS include Acceptance, Adapting, and Adjusting. Hearing a diagnosis of MS brings a period of trying to accept the diagnosis and coming to terms with it. Acceptance is not an easy feat and can take time. It can come in waves and show up again at later points in the disease course too. So, it’s a step that individuals may find themselves faced with multiple times. Finding ways to help accept it can look different and change too and is unique to each person. Adapting and adjusting to some of the changes MS can create is something people find themselves doing often as well. Making changes and modifying things can help maintain balance and expectations. If routines/schedules/tasks need adjusting to help fit your needs better, take time to make these changes so they work for you.
B: B’s associated with MS can include Building and Backup. Building relates to the education and knowledge piece of MS. Building upon information about the disease and continuously learning new facts and resources is an important piece to the process. Continue to build upon your strengths and goals and finding what you enjoy too. Backup refers to the support you put behind you when dealing with MS. Whether it be your own skillsets and strengths, support from others within your circle, education and resources, and health information. It never hurts to have a little backup when needed.
C: The C’s related to MS incorporate Community and Care. Within the MS space there is a great sense of community that many individuals rely and depend on for support. It is vast and has many layers that consist of healthcare teams, MS organizations, peer and familial support, counseling help, and other pieces individuals connect with throughout their MS journey. Community support is a great tool in helping to manage the disease and finding assistance. Care is a crucial piece to the puzzle as well. Finding healthcare, personal, wellness, and emotional care aid is significant in helping cope with the disease and all its factors.
It’s hard to imagine that one disease can have so many differing views of it and be experienced in such vastly different ways, but MS can and does. But no matter how unique each person’s course of it is, there’s still so much to connect and relate to about it. No one is alone in this.
I don’t know if it’s just me, but I’m having a hard time believing that we’ll be in a new year soon. Regardless, 2022 is rapidly approaching with each passing day. It feels like time has gone by more quickly, even during a pandemic, and that we’ve just flown through this past year at lightning speed. Luckily 2021 brought with it more hope and opportunity than the previous year. With its vaccine availability we were able to start doing more and seeing people again. The virus has not gone away but there is more protection now than before and with it more hope and high spirits heading into this New Year.
Spending time with others
Hopefully this upcoming year we will see people getting together more often. Of course, all the while still abiding by safety measures and precautions, when possible. But gathering again with friends and loved ones will be a welcome, continued change we hope to see.
Continued research and education
We continue to learn more daily when it comes to the COVID-19 virus and its variants, and hopefully this will continue in 2022. But not only that, MS research and education remain vital for the MS community as well. Treatment investigations, clinical studies, and education programs have increased over the past year and offered avenues of hope for those in the MS space. Education remains key to staying apprised of what’s impacting those touched by MS.
Support and encouragement
It’s been a trying time we’ve found ourselves in for nearly two years now. Things have weighed heavy on people’s emotions and well-being, but support in the MS community has remained strong and resilient. We’ve seen people still connecting with one another through various means to stay linked and provide encouragement to others. Be it online, by phone, or other avenues of communication, members of the MS community tried their best to stay in touch. MS organizations and groups continued to provide vital services as well, letting individuals know they’re not alone.
As we embark upon this New Year, let’s try to stay hopeful for refreshing changes and opportunities that may come. We can continue to hope for better times ahead.
Wishing everyone a hopeful and bright New Year!
It’s hard to believe, but the holiday season is upon us once again. We’ve entered November and have already had some cooler temps across the country these days, helping to signify that special time of year. The holidays mean something different to everyone. And for some it means a period of stress and tension trying to plan and prepare for the festivities to come. But the holidays don’t have to encompass just tension and hard work. We can make things a little easier with some planning and prep ahead of time.
I am a huge proponent of making lists. They help keep us organized and help us to recall things that need to be done. Having lists written out gives you a better idea of what your tasks are and allows you to put things in order of priority. It’s also a great feeling being able to throw the list away once you’re done with it.
Keep it Simple
Sometimes less is more. During the holidays there’s already a lot going on, so why not simplify things where you can. Cooking for the holiday? Maybe focus on less side dishes or the abundance of dessert varieties. If gathering with others, go potluck for the meal. Have others prepare their favorite dish to bring to the occasion. And maybe even swap recipes with one another to make it more fun. If you’re able to, why not have a holiday meal or party catered? Or perhaps order your favorite takeout and gather with friends and family. Keeping it simple helps free up time to do other things you enjoy during the season.
Ask for Help
There is absolutely nothing wrong with asking for help, and at the holidays is no exception. Asking others to help plan and prepare meals, purchase goods, or clean and organize, can help you conserve energy and helps to maintain sanity during what can be a hectic time of year. Others may be very willing and eager to help, especially if they don’t have their own share of endless tasks to conquer. You can also pick and choose who you ask for support. You don’t have to take on everything alone.
This time of year can be truly wonderful and magical. It doesn’t have to look a certain way or cost lots of money. It’s about enjoying the spirit of the season, the joy, the lights, the hope. Be sure to carve out time to appreciate the special moments of the season. Nothing is or must be perfect. It can just be whatever it means to you.
Wishing everyone a safe and joyous holiday season!
Being diagnosed with MS can be a scary and unsure time. Lots of questions come up in the process and produce many thoughts centered around ‘what if, how, and when’ concerns. It can be overwhelming to learn about the disease too as there is so much information available on it. But there’s no right or wrong way to start educating yourself and others about the condition. And it’s important to know that it’s not something that can or has to be learned overnight. I always tell clients to have patience with themselves and to learn things as they’re comfortable doing so. Everyone is different and approaches things in their own way and time and that is ok. Below are some commonly asked questions that arise during this period for many diagnosed and their loved ones.
Can I still work?
This question comes up often as individuals consider what their future may look like with MS. It will depend upon one’s symptoms and course of their disease, but many people do continue working in some capacity with their diagnosis. Job accommodations can be asked for to help modify work schedules, tasks, and routines. Vocational Rehabilitation offices located in counties throughout the country work with individuals who need assistance in finding/maintaining employment that meets their needs when managing disease symptoms and issues. Having a conversation with the doctor can help with this too. Evaluating any changes that could be beneficial in the workplace or considering whether to and if it’s the appropriate time to retire or apply for some type of disability benefits can be discussed. It’s a very personal and tailored decision that comes with a lot of thought and input. Finding what’s right for you can take some time and deliberation so again have patience with this process too. More information about Employment and MS can be found on MSAA’s website here, https://mymsaa.org/publications/employment-and-ms/.
How do I disclose my diagnosis to others and help them understand the disease?
Again this is something that has no right or wrong answer or way of going about it. When and if you decide to disclose your MS diagnosis to others is a personal and unique decision and can be done in different ways. Letting others know right away or waiting to tell them is something each person decides based on differing factors. Like their relationships with their family and friends—whomever is in their support network, their employer and colleagues, etc. Some people will seek out and find comfort and support by telling others. While some who may not receive the same level of care from those they know may decide to wait or not disclose. For those who show interest and want to learn more about MS there are many outlets in which they can do so. Using reputable MS sources of information online, watching educational videos, listening to podcasts and webinars are just some ways. There are many avenues to educate about the disease. For the latter individuals who may not have that inner-circle support, there are several ways to find these support resources elsewhere.
Is there support available?
Yes! And in more ways than one. This is a question some folks ask hesitantly because they’re not sure if this is something they want to pursue right out of the gate. This is completely understandable. Every person’s experience with MS is different so sometimes it can be intimidating and uneasy to interact with others who may have a different course with their MS—different symptoms and varying degrees of disease progression. But this too can be something that’s uniquely approached. People can choose to connect with others as they find it necessary and feel comfortable in doing so. And if they make the decision to, there are many avenues to try. There are MS organizations, support groups, and online communities, including MSAA’s peer support forum My MSAA Community, that individuals can turn to for information and support.
One of the most crucial things to know is that you do not have to go through the diagnosis alone. Whether just diagnosed or years into its course, you don’t have to do it by yourself.
On MSAA’s Helpline we often hear questions about MS relapses and what constitutes a relapse. Individuals ask whether the symptoms they are currently experiencing are just due to their MS or if an exacerbation of symptoms may be occurring. These are great questions that warrant valid and informative responses. The challenging piece of this, on the part of the healthcare professional at times, is helping to identify a true MS relapse from a pseudoexacerbation.
To be diagnosed with a true relapse, there must be certain factors at play. Individuals will either experience new symptoms or a worsening/recurrence of existing symptoms. These acute symptoms have to be present for at least 24-48 hours, without signs of other infections or fevers. This is where it can become tricky identifying a relapse from a pseudoexacerbation. Because with the latter, one can experience a temporary worsening of symptoms without inflammation or nerve damage occurring. A pseudo flare can result from illness/infection, fever, stress, heat sensitivity and other factors.
It’s important to discuss these differences with your healthcare team so that you can better communicate if you’re feeling any changes in your symptoms. Ask your doctor what signs you should look for if a relapse may be present, and when you should reach out to their office for assistance. Talk about ways a relapse could be treated and managed if it occurs. And make a plan for what you should do if you’re not able to get in touch with your doctor’s office. Some individuals will seek emergency medical services if needed when they’re experiencing worsening symptoms. So ask your doctor if/when you should seek care in this manner. Asking questions about MS relapses can be an integral part of your overall treatment plan and follow-up care.
Throughout life there are moments that call for certain emotions and behaviors as a way to react and cope with things. There are times that call for seriousness and focus, sadness, or frustration. But there are also times that call for humor and lightheartedness. These elements can help keep you going sometimes, especially through challenging periods. Seeking out humor is a task everyone should try daily.
Some of us are fortunate to have naturally funny and humorous characters as part of our day to day lives. My husband is one of these people and can make me laugh-especially in times where I don’t want to be amused, haha. He has a knack for it, a talent that comes so easy to find humor in almost any situation. I’m grateful for the humor he adds to my life each day, even when it’s not wanted. He knows in those moments where I become too serious or overly stressed, I can probably use a good laugh to break through nerves and tensions. And he’s usually right.
I know we can’t have humor and laughter 24/7, but I think it’s important to make room for it whenever possible. There are too many obstacles, traumas and tragedies that plague the world. Be it illness, loss, or some other type of devastation—we don’t know what the next moment will bring. But amidst this we can find light, hope, and humor to manage our feelings about what we can’t control. If humor can be a way to help cope with the unimaginable, then bring on the laughs. Because at the end of the day if we can control our reactions and emotions, why not add humor into the mix.
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.
Wishing you a safe and pleasant journey!
With Father’s Day just a few days away, it’s nice to take this time to think of all the special men in our lives. They certainly don’t need the title of dad or father to be thought of at this time of year. Especially if they hold a special place in your heart and life, no matter the type of relationship. We have fathers, grandfathers, brothers, uncles, godfathers, cousins, and friends that we are blessed to know and be surrounded by. They deserve to be recognized and celebrated, for more than just one day!
It’s a perfect time to let these special guys know what they mean to you. What you admire most about them and what you treasure about your relationship. Tell them thank you and how they’ve made your life brighter. Whether they’ve provided you with strength and courage, protection and love, or just endless support. Don’t miss out on a moment where you can express to them all that they are to you.
The day may also bring challenges for those who are mourning and remembering the men in their lives whom they’ve lost. It can be a difficult time for the men waiting and hoping to become fathers, or for those who have lost a child. But the day can be spent honoring and recalling special moments and memories too. To have faith and keep hopes that future Father’s Days may look different.
Wishing everyone a wonderful day!