MS Burnout. Two words that, when separate, denote significant struggles. When you put those words together, it can be explosive. MS Burnout is a real thing. Let’s talk about it.
Having MS can be draining and overwhelming, whether you’ve recently been diagnosed or you’re 20 years in. I’ve seen the effects it can have on even the strongest person.
Do you find that there are days when you are just so extremely frustrated with MS-related challenges? Are you Continue reading
Relationships can be hard work. They require unwavering amounts of attention, maintenance and commitment. And though they can come in all different shapes and sizes, all bonds have their share of ups and downs and all-arounds that can drive people crazy. It’s the process of weeding out the beneficial, encouraging relationships from the negative, toxic kinds that is so important. Yes, relationships can be hard work. But making sure you’re putting the effort into the ones that are rewarding and worth your time is the difference.
You’ll find that some relationships Continue reading
Wow, I can’t believe its November already! I don’t know where this year has gone, but its end is quickly approaching and with it, the holiday season. Any time of year can be hectic and stressful. For many, the holidays bring an added helping of overload and chaos a lot of the time. While some are able to focus on Continue reading
Everyone’s lives are very different and unique. But when it comes to certain experiences we can all relate to one another in some way. Many have had the unfortunate and shared experience of moments that are unexpected, uninvited, and honestly, unwanted during the course of life.
For individuals diagnosed with a chronic illness like MS, acceptance is not often the first thing on their mind. Questions, doubts, Continue reading
As we’ve just finished a very active MS Awareness Month here at MSAA we wanted to take some time to talk about support networks and positivity for this month’s blog theme. When dealing with an illness like MS, its helps to create and focus on connections to others within the community, to know that one is not alone in what they’re experiencing. From our Ask Me Anything events in March we saw lots of similarities in what others were asking when it came to their MS symptoms and disease course. On MSAA’s Helpline we often receive calls from clients asking ‘Am I the only one who’s experienced this?’ ‘Is this normal for MS?’ ‘Does anyone else have this issue?’ And we consistently find ourselves validating all of these questions and concerns, because the fact is that individuals are not alone, as there are many others out there wondering the same things.
I think the feeling of knowing you’re not alone in a challenging experience can help to quiet the fears, concerns and anxieties that accompany it. Asking if there’s anyone else out there going through the same thing and learning that there is, can make someone feel more validated and less isolated. This is why having a support network is so vital, and not only to connect with during difficult times but also to share good times with as well. It’s comforting to vent, cry or scream in times of strife and have others listen, but it’s also important to relay positive experiences, humorous moments and celebratory occasions with those in your circle. Life will have its ups and downs as these inevitably come with the ride, so sharing in the ups when they do occur can help combat the downs. If you find yourself feeling alone and asking questions just keep in mind that you’re not, and there are others out there asking too.
For this month’s MS Conversations blog we wanted to focus on the topic of changes in routine, but with this thought, it was important to highlight employment changes as well, as this is something that comes up often when talking with clients. The timing is appropriate, as Fall always marks a time of change in the year itself, not only in the season’s colors and temperatures but with the familiar sights of back to school and holiday displays (because of course stores are already doing this!).
There are many individuals within the workforce living with MS, and oftentimes its symptoms can impact one’s work routine and abilities in their position. This can be very frustrating and challenging for those affected because with it comes the added stress over job security, self-worth and independence. Because of how our society views work and the roles we fulfill, many people identify themselves by their job and what they do for a living—so if this changes, one’s self-perception can change too. But it’s important to know that there are resources available to help accommodate changing needs in the workplace or help to find another position if an overall change is needed. Separating one’s self-worth and perception from one’s job role is going to be a continuous feat that society as a whole must work on, because individuals are and should be defined by more than just the work they do.
For those who have human resource representatives in their workplace sometimes it’s a good idea to start the discussion with this department if you need something modified in your role; whether it is your schedule, job location/environment or something else, there may be procedures in place for how to ask for these in the workplace. The Job Accommodation Network is a helpful source of information on employment accommodations as well. And for additional help receiving workplace accommodations or finding employment, a Vocational Rehabilitation office is a resource throughout each state that assists those living with disabilities on information and resources regarding employment needs and changes. Working with one’s doctor/healthcare team may be another avenue to assist with employment matters too, especially when discussing symptom issues and their (potential) impact.
Change can be difficult to encounter at times so it’s important to know what resources are in place that could help. Being aware of MS symptoms and how they could impact needs in the workplace can be a good starting point.
This month on the MS Conversations blog we’ll be talking about different aspects of wellness and its importance and impact on various parts of one’s life. With it being MS Awareness Month, it’s good to be aware of and shine light on your own well-being and state of wellness, because this can encapsulate many diverse pieces. One aspect of wellness I wanted to discuss is occupational wellness. Now usually when we hear the term ‘wellness’ we think of our bodies and the physical side of this concept, and while this is a significant part, it’s not the only piece of the puzzle.
In talking about occupational wellness I realize that everyone’s situation is unique and the workforce may or may not be a current part of one’s day to day. This is not to say that the elements of occupational wellness can’t be relevant and applied to different situations or encounters experienced by all. Some of the factors related to this piece of wellness are important to consider for any facet of life, again because it circles back to your overall state of wellness. Some basic principles of occupational wellness include satisfaction, motivation, leisure, balance, inspiration and accomplishment. No matter if you’re currently a part of the workforce or engaged in other types of activities and routines, these components are an integral part of daily life to try to acquire to help achieve wellness.
Within the workforce it’s important to try to find work that you enjoy doing—that you’re passionate about and that keeps you interested and continuously learning. Being able to work well independently and with colleagues, and communicate often are essential pieces to this, in addition to being inspired by the work you do and wanting to constantly challenge yourself in it. Sometimes it’s easier said than done, but if you find something, whether it be in work, or another kind of activity or endeavor, make sure it’s something that means something to you. When you engage in a pursuit that has purpose for you and that you can get behind, that makes all the difference.
So again, occupational wellness is just one piece of the puzzle, but it has multiple factors that are easily transferable to other aspects of life and overall well-being. Whatever it is you do – stay engaged, focused, and most of all, inspired.
In keeping with the theme of ‘change’ during this month’s MS Conversations, I wanted to talk about MS symptoms and how they can differ for those diagnosed. MS often comes with its’ own agenda and unpredictable course for those affected, often making it difficult to anticipate what symptoms can arise and how they can vary from day to day. And because each person’s experience differs greatly with MS, it’s challenging to try and compare situations in order to come up with guide points and specifics to learn from throughout the disease. The type of symptoms, their range of severity, and their disappearing/reappearing act can all change according to how one’s MS affects them, which further adds to the list of unattractive traits held by MS.
However, because people with MS have a great voice and have been consistent with reporting their symptoms and experiences with the disease, doctors and researchers have an abundance of information to work with for developing more symptom management therapies and treatments that could potentially help reduce these issues. There are several techniques used to treat MS symptoms, but it may take some trial and error along with continued follow-up with a doctor to find what works best and most effectively. While no two MS cases look exactly alike, each individual’s condition brings with it more power and knowledge because it’s so unique, and therefore helps to contribute to the understanding of this ever-changing landscape.
As we continue to pass through the summer months and find ourselves looking towards a change of season (hopefully soon!), there’s still some time for fun to be had during the remainder of the summer. At times it can be difficult to try to make plans or schedule activities if the uninvited MS decides to rear its head and join in. But there are some last minute ways to try and enjoy the rest of the season, without having to make elaborate plans that MS will try to outdo.
There are times when heat-excessive summer days call for indoor activities, so why not have a game day/night? Getting back to a time where playing board games and cards was all the rage can be fun and nostalgic, and a good way to find some last minute amusement with friends or family. And keeping with the indoor theme, how about a movie night? Gathering together to watch a good flick, even if coordinated last minute, can be relaxing and entertaining. Orchestrating a last minute trip to the movies or visiting a museum or aquarium can also be some fun activities that may not require excessive planning but an opportunity to enjoy events of the season.
Check with community offices and message boards in your area to find some local events being held during the rest of the summer. Concerts, festivals, shows and exhibitions are just some of the local activities your community may offer that you can take advantage of last minute. Sometimes trying to take part in an activity that’s more spur of the moment and last minute can work to your benefit, especially if it catches MS off guard and doesn’t give it the opportunity to invite itself!
Being halfway through July we can surely say the summer season is in full swing, and for those with MS it’s no secret that the heat and humidity of the season can be a real downer at times. MS heat sensitivity can result in aggravated or worsened MS symptoms and help to contribute to an overall disliking of the summer months. This can be disheartening because many individuals enjoy this time of year, with outdoor activities and events that beckon and get-togethers that warrant much time outside—shame on MS for trying to corrupt this. But there are things that can be done to try and overcome the cruel intentions MS may have during this time of year, and some may already find themselves doing them.
- It might be tricky at times, but when you can, get outdoors when the temperature is more manageable. Going outside earlier or later in the day/night can help you avoid the hotter temps throughout the day.
- When possible, engage in activities that are in cooler/air conditioned places. If you have to be outside, try to take breaks in shaded areas or indoors when you can.
- Wear cooling products like neck wraps or vests that can help to reduce heat sensitivity issues and keep your body temperature down.
- If you’re not in the mood to travel or go out due to the heat, have friends or family come to you for a visit.
- Explain MS and heat sensitivity issues to those close to you so they have an understanding of what you’re experiencing and why there may be some limitations during this time of year.
- Try to stay actively engaged in the activities and events you enjoy during these summer months. Adjusting the timing or setting of your interests or finding new things to participate in can help to combat the heat factors.
There’s a line you can draw with MS when it comes to your likes and interests. If you enjoy the summer season take part in things you’re able to or try new experiences, and let MS sizzle by itself under the summer sun.