All this month we’re highlighting some of the least talked about symptoms associated with MS. Some of which can also be some of the most embarrassing symptoms to arise from an MS diagnosis. While there is a lot of territory to cover, one of the things that remains the same is that it’s often difficult to discuss these symptoms with friends, family, or even a heath care professional. It’s one thing to mention to your doctor that you are feeling dizzy or having difficulty with heat, but it’s a far different thing to mention that you are having concern over loose bowels or sexual desensitization. While not easy conversations to have, here are some tips and hopefully helpful tactics to use when you have to bring up some of the lesser talked about concerns you may be experiencing.
- Use Your Own Words: Too often we try and get technical or complex in our explanations of medical concerns. But explain the problem to your physician or medical team in words you understand and using language that allows you to explain what is going on.
- Be Honest: It’s habit that when someone asks how we’re doing we’re almost totally conditioned to say “Fine, I’m Fine.” But leaving out details or not wanting to burden your physician during a visit could spell out trouble for you down the line. Be honest about what has changed or is new with you when you speak with your physician or medical team and let them know what’s going on.
- Don’t Miss Appointments: I know this one can be difficult depending on your situation. But making your doctor’s appointments with some regularity gives you an opportunity to be more comfortable with them and for them to get to know and build a rapport with you. Missing appointments too often leaves gaps in your chart and care that might make spotting or explaining unusual symptoms or embarrassing concerns more difficult to confront
- Keep Records: There are lots of things we document – when our car needs an oil change, when our kids have soccer games, that meal we had last night on Instagram. We document everything from what we buy, to what we think, and everything in between. Make this apply to your health also. Document changes you notice, feel, experience and any information you can attach to it. This may seem a bit much but when you need to recall how long the mouth dryness lasted or your vision was tunneled you will be glad you kept good records. Having a tracker like the My MS Manager™ app can help you keep all your notes in one place and have them to refer to when you talk with your physician
- Know That You Aren’t The Only One: We often don’t want to discuss embarrassing or strange things that occur to us or we experience as part of our health, for worry that we’re the only one having this problem. Even if it is a rare side effect or symptom, the odds are you are not the only person who is experiencing it. Put your mind at ease and know that of the hundreds of thousands of others living with a diagnosis, the chances you are the only one are pretty slim.
There are a bevy or symptoms that are less experienced than the more well-known ones, but that doesn’t mean you shouldn’t discuss or get answers for them. Knowing who to ask your questions of is another good point to remember (we’ll call this a bonus one). Deciding to have medical conversations with a medical professional or asking mental health related questions of a therapist or counselor give you the best chance of getting some answers. Yes, your neighbor or relative may be able to answer them for you, but making sure to connect with the right people is key to addressing many of the concerns you may have.
If you can believe it, we are already in the month of May! 2017 has been steadily moving along and this month we are looking into the topic of coping. Everyone has their own versions and ideas about how they best cope with, and through, stressful or difficult situations. For years professionals have presented, written about, fine-tuned and zenned over the most positive ways that we can cope. While not every example will work best for every person it’s always great to have some ideas in your back pocket when the need arises. There is nothing wrong with testing a few out to see which ones do not work for you and which ones are your go-to when counting to 10 just does not cut it anymore. You can try:
- Cooking or Baking
- Scheduling some time off and stick to it
- Spend some time with young children or animals (both tend to be care free and some of that may rub off on you during your time with them)
- Create something artistic (this can be any number of mediums such as music, clay, paint, found objects, writing, photography and the like)
- Visualization, Meditation. Group or Individual Therapy
- Physical Activity (this too can be any number of things; swimming, dance, yoga, stretching, sex…yep, you read that right…a bike ride or walk)
- Give of yourself to organizations you are interested in. Volunteering can not only help you, but also others
- Explore something in your area that you haven’t before
- Get some more sleep
- Seek out speaking with friends or family and expressing your emotions
We all know that we have some negative coping mechanisms that may help for a short period of time in the moment but still leave us a bit in the lurch. Seeking out more positive ways in which to cope, these or others may help us to set up a more positive pattern to help deal with a negative situation. We’d like to hear some of your positive coping skills or ideas that you’d like to share. Take a moment to check out our thread on My MSAA Community.
This week is officially marked as National Volunteer Week. Volunteers are so necessary for many organizations including ours. For this post we wanted to introduce you to some of our amazing volunteers here at MSAA.
Charles Backlin known around our office as Chuck has been volunteering with MSAA for 11 years in our home office. After retiring from the US Military Chuck was in search of something close to home that he could get involved with when he came across MSAA. Chuck has been volunteering since he was young, taking part in Boy Scouts and the Ground Observer Core in Junior High “We needed eyes on the ground in area’s where we were watching for potential threats from Russia. We would go out and observe the area and report places that were suspect to be evaluated by a fighter system.” From this early exposure to being part of a volunteer group Chuck was able to experience not only being a part of a group and working toward a common goal but also serving others. When asked what he would say to potential volunteers he stated “They need to get out and do for other people. It’s important.”
Barbara Gershenoff volunteers with our lending library helping clients get resources and connected to writings focused on living with MS, spurred on by having a friend who was diagnosed with MS years prior. She also takes part in special events such as our annual Golf Tournament . For the past one and a half years Barb has come in to work with the team at MSAA to continue to connect with clients across the US and help raise funds so that we can continue to provide our programs and services to clients. Barb is a retired school teacher from New York who when she and her family moved to NJ was looking for a worthwhile organization to get connected with, googled local volunteer opportunities and came across MSAA. When I asked Barb what she likes most about volunteering she said without hesitation “I love the people here [at MSAA]. I’ve gotten to know them and this place [MSAA] feels like home. And there is of course the fact that I get to help people who really need help.”
Nada Baydoun has volunteered with our MSAA Social Media Street Squad since the summer of 2015. “I signed up to volunteer with MSAA because when I researched, I loved what I saw on the website. I was also encouraged to volunteer with MSAA due to the excellent reviews and comments on Facebook from people suffering from MS.” As part of our Street Squad team, Nada and hundreds of other volunteers help MSAA spread the word about new developments and available resources to the MS Community thru platforms such as Twitter, Facebook and Instagram. “I like that I feel that I am spreading awareness about MS. Many of my Facebook friends have messaged me privately asking me about my MSAA posts and wanting to learn more about MS. I also like that the posts [from mymsaa.org] offer practical and helpful information to those suffering from MS.”
Each of our volunteers and all of the amazing volunteers who have partnered with us at MSAA over the years are a vital part of what we are able to do for the entire MS Community. They help us to spread the word and make our programs possible; they are our ambassadors to communities and some of our greatest supporters. Thank You So Much to everyone who currently does or has ever volunteered with MSAA. You are not only part of our MSAA family but we also couldn’t do what we do without you. A big Thank You also to Chuck, Barb and Nada who let me get to know them a little better while writing this post, you all are the best!
If you have any interest in volunteering with MSAA, check out our Volunteer page on our website or contact us at firstname.lastname@example.org.
Self Care by it’s very definition is “Care of the self without medical or other professional consultation” (or at least that is what Dictionary.com says). The very act of one caring for oneself would seem would be natural and come without thought. Then why is it so incredibly hard for individuals to practice self-care? We spend hours, weeks and years of our lives making time to care for others, putting others needs first and making to sure to be there for those around us who call. And while I’m sure this is incredibly helpful to the friends, neighbors, coworkers and loved ones who we give our time to, we often suffer in the name of others.
Please don’t get me wrong, helping family, volunteering for organizations, being there for friends and coworkers is valuable and vital to building good community and connection, but taking the time for self is vital to you. Often, and I’m probably not alone in this, I feel selfish and self-centered when I turn down working at a community event, changing plans to help a friend move or asking someone else to take something off my plate. But it’s important to remember that “an empty cup has nothing to pour out.” So if you are depleted, running on empty, feeling emotionally or physically fatigued, not only will you personally feel the weight of it but possibly the interactions you have with others will also be impacted.
What is self-care? That looks different for every person. I enjoy a cup of coffee in the quiet of the morning on my back steps, going to the movies first thing Saturday morning when I’m the only person there and taking my favorite playlist with my DSLR camera and getting lost exploring my city on a beautiful day. Yours may be similar but it may also be completely different.
I’m a fan of podcasts and educational talks. If you have not heard of them, give TedTalks a try. They have a section on the importance of Self-care. And if you don’t want to take my word for why placing an emphasis on self-care is so important, give them a listen as they give ideas, tips and why behind the what of self-care. Listening to their talks may just be an act of self-care in itself 🙂
It’s (finally) officially spring in the Northern Hemisphere. While temperatures in the spring-like arena appeared earlier than expected in many areas, today marks the official start of the Spring Equinox, and with it the end of another winter.
Spring, like many of the other seasons, helps us to mark the passage of time. One month ends as another begins while we watch as one season gives way to the next. The passage of time can be something that renews us, but for some it can also be decidedly daunting. Preparing for a change or coming to the end of a journey. When we think of our wellness we tend to parse it out into differing categories and label each with action steps to move it along. Time is one of the few things that inches its way into all aspects of our wellness. The time we take to devote to our physical wellness. Setting aside time to recharge and center for mental wellness. Or the time we give ourselves to work thru emotional times to attend to our emotional wellness. Time and for many of us the lack of it in reserve is another aspect we have to consider when we talk about our wellness. Being deliberate about taking time to ourselves when we need it most and even when we don’t think we do. Taking an intentional (as much as is possible) look at the time we spend and what that says about the things that matter to us. It’s been said that “time has a wonderful way of showing us what really matters”. Where and what and who we spend our time on has the ability to shape the way we view not only ourselves, but also our wellness.
As spring arrives and we are in the mode of thinking of change, take stock of your personal wellness on all levels. See what aspects of your wellness that you may be spending not enough time, too much time or no time at all on and consider making an adjustment to see how thinking about the devotion of your time will impact your overall wellness.
Relationships are pretty often thought of strictly in the context of romantic attachments. Especially this time of year as we emphasize love and romance, couples, and all that comes along with it. But there are other relationships we sometimes forget to emphasize. Friends, family, co-workers, support group members, or neighbors. All of these, too, are relationships. It’s difficult in a world where things move a mile a minute and there is so much vying for our attention to remember to think of these other relationships and place some emphasis on them as well. Not just when the stores turn to red and pink and the costs of flowers rise to somewhat ridiculous levels.
While romantic relationships are important and make up a good portion of our understanding of relationships, support and encouragement for many often comes from those they are not romantically linked to. Friends who are there for us when we need a shoulder to cry on or a hand up when we are weak. Support group members who share their own story and listen to ours as we all try to live our lives as best we can and make the most out of all we have. Neighbors or co-workers who help us pass the time during work or who we bond with over community concerns and celebrations. These relationships, just as important as romantic ones, help shape both who we are as well as those around us and are strong bonds during trying and uncertain times. This month in addition to celebrating and relishing any romantic relationship we may be in and acknowledging the importance of this in our lives, let us take some time to also thank and celebrate the other relationships in our lives with people we love… just not in that way. Remind your friends and family what they mean to you or show appreciation and gratitude to your co-workers or support group members. It may not be the stuff of Hallmark movies but I’m sure they’ll really appreciate it that you took the time.
Resolutions! We’re winding down the end of month one of 2017…have you stuck to your new years resolutions?? Or have you like most of us slowly fallen off that bandwagon? Every year individuals around the world make promises to themselves or set goals for the new year. Big, small and things in between, we make our lists. I’ve often done this myself and like many come the start of February when someone asks me “Hey how are your New Year’s Resolutions looking?” I look at them and with complete focus reply “Resolutions…what Resolutions?? Oh those silly things”
I’m sure I’m not alone in this idea of looking around at midnight on December 31st and getting caught up in the excitement and coming up with a few dozen things I will definitely do differently in 2017. This year as I watched the clock tick down and 2016 was on it’s way out the time door I decided that instead of vowing to eat better, read more or even save money that instead this year I wouldn’t make a resolution so much as start a conversation…with myself. As the party started to count down, 10…I thought over the past year. 9…The experiences and the problems. 8… I thought about the things that I’d loved about 2016. 7… and those that I didn’t. 6… And then I had a thought. 5… What if in 2017 instead of promising to do things I may or may not actually do. 4… I decided to promise myself something. 3… That this year, in 2017. 2… I would find, explore and do the things that make me happy. 1… My one and only promise/resolution/goal for 2017 was to the take time to really ask myself and listen intently to the answers to what makes me, me. The happy, more positive version of me…0.
So that’s what I’ve been doing this year. Yes I had my “I really should cook instead of running thru the drive thru” moment and gotten up early to do some yoga, or in some cases just have a cup of coffee and watched the sun rise. But not necessarily because I’m trying to be super healthy or save money or anything specific to that. But because cooking and watching a new day start and coffee make me happy. So it may be the end of the first month of 2017 but there is definitely still time to decide not on a resolution per say. But on more of a journey or an exploration…What if you spent some time this year, finding what makes you happy and doing that from time to time not by accident but intentionally. It might be easier to keep than some of the other resolutions we’ve all made.
It was only a sunny smile,
and little it cost in the giving,
But like morning light it scattered,
the night and made the day worth living.
F. Scott Fitzgerald
Fitzgerald is the author of my all-time favorite book and this poem that, though short, reminds me the important role that light can play. Light is not only the opposite of darkness and necessary for many of the things we routinely do, but it’s also a great symbol. This time of year we routinely hear words such as peace, joy, good will (yes I know that’s two words) and my favorite of all – Hope. Light reminds me of the hope that we can have and sometimes have to fight for. It’s not easy at times with all that the world throws at us to hold onto hope and it can be difficult to get back when it seems it’s gone. But it’s also one of the things at this time of year we think on as one year prepares to give way to another. When we start to wonder what might be.
There is this amazing festival in Thailand (northern Thailand to be more exact), called Yi Peng, where people set afloat thousands of paper sky lanterns or Khom loi and fill the night air. This festival has been adopted and is celebrated around the world including here in the US. Cities and communities around the country hold lantern festivals during the year, giving participants opportunities to not only come together to partake in and watch something breathtakingly spectacular, but also to reflect. Many people assign to their lantern some significance or importance. Maybe your lantern could symbolize turning over a new leaf or good wishes for starting down a new path. It could also stand for letting go of something you’d been holding on to, making peace with something or someone you’ve had a hard time with. Or it could symbolize your hope for yourself and those around you. Light, as Fitzgerald puts it, has the power to scatter the night and while he is specifically talking about the light a smile can bring, I’d add in that hope in it’s many forms brings forth a powerful light as well. This December, as 2016 begins to wind down, take some time to yourself to find where you can relight your hope and scatter the darkness. Maybe make today a little brighter.
If you are interested in seeing first hand one of the incredible lantern festivals and, like myself, cannot go to Thailand check out The Lantern Fest.
I think we can all agree that this Election season has seemed much longer than most. While tomorrow may bring an end to the commercials, debates, and political satire on late night TV (for at least 3 years), it is imperative to remember how important this actually is. Voting has been around officially in the US since 1789 when a then-small number of eligible individuals voted in our first President, George Washington, and his right hand men. Since then we’ve sworn in 43 people to serve in the capacity of President and tomorrow we’ll elect number 44.
While it may feel like it at times, we aren’t helpless in what happens; and while not everyone may be satisfied with the outcome tomorrow, being part of the conversation is up to each and every one of us. Voting is our shot, an opportunity for us all to have a say in who governs our cities, counties, states, and country. While everyone has their own reason for voting for their choice, individuals living with disabilities or chronic illnesses have a vested interest in what comes next and whom our elected officials are. These officials will be responsible for upholding our benefit system, enacting our budgets for public transportation, and charged with making decisions on expanding or ending needed services. They’ll be some of the loudest voices for where research dollars go and be in the room where it happens, as conversations determine the fate of programs and plans that impact our healthcare system.
“Where” or “Who” can you ask questions of, you might ask? On Election Day many disability rights organizations are available by phone to help answer voter questions regarding issues that impact disability services. You can contact your local disability rights advocacy group to learn more about how you may be impacted by the pending election. Also, here are a few tips in regards to getting out to vote:
- Make Sure You’ve Registered! Many states have specific times when you must register to vote in advance. If you missed the deadline this year, make sure to register in advance for future elections.
- Confirm your poll location! Call ahead to your city or county government office and ask for information on accessible transportation, opening/closing times, available parking, or any other needed updates on your polling place.
- Get the phone number! Find the contact number for your State Office of Protection and Advocacy, and bring it with you when you vote. If you run into any barriers such as lack of accessible transportation to the polling site, physical accessibility of the building itself, problem in accessing the voting equipment, or understanding your rights, this is who you can contact. This is also the office that can advise you of your rights in general under the ADA.
I know you might be thinking ‘Does it really matter if I vote?’ YES, Yes It Does. You don’t want to be the person asking ‘What’d I miss?’ or wonder later on what impact your vote could have had. Exercise your right to vote on November 8th. The world and history has its eyes on us, let’s make sure we all do our part to elect our next administration.
Bonus Points if you know how many references to Hamilton are included in this blog. But more seriously, get out and vote tomorrow November 8th…Your Vote Counts!
I think it’s safe to say it’s officially fall, the weather has turned cooler (for the most part) the leaves are changing colors and Holidays are just around the corner. I know, I know we can’t rush these things but if some of our stores had it their way we’d be decorating for Christmas on Labor Day…but I digress. This month as we get ready for some of the busiest times of the year we are focusing in on stress and stressors. BUT before we get there I’d like to present an idea, a movement of sorts for this November…. A Month of Happy. I recently read The Happiness Project by Gretchen Rubin and at the end thought “A year is a long time to work on this. But if we take it 30 days at a time we should be good” (yes I know it could possibly be the same thing but stay with me).
“Happy,” as we all know, is a subjective term. What makes me happy may not make you happy, or anyone else for that matter. I think that is what makes something like this so important. Because it’s personal to you individually, and you make it exactly what you want. Now there are lots of blogs, planners, charts and How-To guides that will seek to teach you just how to be happy, but ultimately that’s what works for those people, and great for them. What works for you? For the next 30 (technically today is the 2nd so the next 29, but who’s counting) days decide to do one thing that makes you happy (let’s draw the line at one thing that won’t get you into hot water). Go outside and enjoy the leaves, stay in bed all day watching your favorite movies, Pinterest away to your hearts desire and then actually try some of those things. Read a book you’ve had on your shelf, stop in and sign up for that Thai Chi class you wanted to try, eat something you used to love as a kid or none of these things at all. Come up with a calendar and determine that everyday this month you will do something that makes YOU happy. Not for your kids, spouse, boss, family, friends instagram or twitter followers, but just for you. Give yourself permission to enjoy this month before the holidays set in and your plate gets full both literally and metaphorically. Enjoy the time you put into this and you might find that being happy is less about combating the negative or the stressors in our lives and more about making the conscious decision to do something for ourselves. Happy November 🙂