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.
Keeping with the theme of relationships on this month’s blog inspired me to do a little Googling into different relationship topics and recent news to see what’s been trending lately. I actually found several pieces on toxic relationships and help in how to recognize these. Usually when people think about relationships the mind doesn’t tend to go towards the dark side necessarily, but the truth is there can be a lot of toxic parts to a relationship that some people don’t even notice sometimes. Often, people believe their relationships look like other’s relationships; everyone has their ups and downs and not-so-fluffy cloudlike days and this is normal. This is true, but when the relationship is in that darker side of the clouds more often than not, it’s something to address.
Psychology Today recently posted about how to recognize toxic people and relationships, and it’s not always easy. In a relationship, sometimes the people involved have blinders on in order to see what they want or need to see in the other person; it’s only natural. Everyone has flaws and no one is perfect, but there are some toxic traits that can’t and shouldn’t be overlooked. Things like selfishness, disrespect, and arrogance are all signs that point towards a potentially harmful toxic relationship. The post also mentions these other red flags as potential signs of a toxic bond:
- Being unapologetic
Examining one’s relationship and trying to recognize red flags is not easy. It can be overwhelming and sometimes shocking to realize that the relationship is causing more harm than good and if it’s contributing to stress and negativity. Sometimes these bonds are ones that can’t be severed so easily either, especially if they’re with family and loved ones. This is why it’s so important to surround yourself with positive energy and loving relationships whenever possible, and taking a step back from the ones that aren’t is sometimes necessary. Reaching out to others for support, seeking therapy, taking time for self-care and self-love are actions that can help combat toxicity. Everyone deserves to be respected and to be in relationships that nurture love and support; anything else is unnecessary distress.
In talking about relationships this month on the blog it’s impossible not to think of the bonds I have with the people in my life and how impactful they are in shaping who I am, and in turn, what I am to others. Sometimes we don’t realize how much we’re touched and influenced by other people. But all it can take is just one conversation, one tiny fraction of an entire day to make an impression on someone else. I had an occasion recently that I wasn’t really feeling up to celebrating much. My husband on the other hand, was very happy and wanted to share his elation; he has a special knack for being positive and optimistic. His exact words were “someone has to be excited for you.” The sentiment didn’t resonate in that precise moment but afterwards it was all I could think about. That this man knew that I wasn’t able to feel joy in that particular moment but still wanted to mark the occasion and celebrate for me. That is a remarkable relationship trait.
There are going to be times when a day is gloomy, a mood is sour, or chaos arises. It’s a roll of the dice sometimes in how a day will play out — but what matters is who is there with you at the end of that day, being your cheerleader and light in the darkness. It’s difficult trying to be happy and positive 24/7, we’re only human; it’s part of our wiring to experience other moods and emotions. But if you have or can find that other person who can champion for you when you can’t for yourself, find gratitude in that because it’s a truly special trait. Being your own champion is of course ideal, but in those moments where this isn’t possible, having that piece in your relationship with someone else is truly significant.
Unfortunately many people experience toxic relationships that are one-sided and selfish where the other person wouldn’t think to imitate this selfless behavior. That is why self-love and self-respect are necessary in your pursuit of finding relationships that will help foster encouraging aspects and positively influence you. You deserve to be loved and supported and knowing this makes all the difference in what you want or are looking for in others. Being that hopeful light for someone else and having them be the same for you when needed signifies a healthy bond; and a relationship where one person can be excited for the other if and when they can’t be for themselves.
Caregivers are some of the most important people in the world. They dedicate themselves to caring for someone else with their time, commitment, sacrifice, and compassion. Being a caregiver to someone else means they don’t always have the time to care for themselves. But everyone’s wellness and care are important, especially for those who need to be there for another person. Caregiving is an enormous task that can stretch people thin and make it difficult to carry out or even think about one’s own wellness. It’s no one’s fault – there is only so much time in the day and when the majority of that time is focused on someone else’s care, a caregiver’s own wellness and physical well-being are often just put on the back burner. The same is true of parenting/family roles and helping professions; others needs are simply put first, without question or expectation.
Caregiving doesn’t necessarily mean that person has to do everything themselves either. Knowing when and how to ask for help is a great strength, and for caregivers there are resources that can help. Oftentimes these resources are geared towards those caring for someone elderly, but it’s these same types of contacts that can help those caring for disabled individuals too. Communication is vital in the caregiver role; being able to talk about what is needed or what’s currently going on is essential to maintaining balance and stability. One key element to caregiver support is respite; a period of rest and relief for those carrying out this role. It’s also a significant piece to wellness – taking a break to focus on one’s own needs and having the peace of mind to know that the person they care for is safe in that moment too. It’s not a selfish act by any means; it’s a necessity of life. You have to take care of yourself in order to be able to take care of someone else. Selflessness is an admirable quality but self-care is equally important.
We’ve talked about different aspects of wellness here on the MS Conversations blog in the past, and this month as we’ve covered topics related to depression we also wanted to touch on factors of physical wellness too, because all of the elements of wellness can intertwine and are equally important. Living with a chronic illness like MS can make it difficult at times to have control over one’s physical health because of how unpredictable and unknowing the disease course can be. However, there are pieces of physical wellness that a person can try to maintain influence over, even though MS may have other plans in mind.
Daily habits and behaviors can have great influence over one’s physical health and can include things like diet, exercise and sleep practices. With a disease like MS that can affect physical body function, maintaining consistent sleep or exercise routines can be challenging at times. It’s in these cases where people may need to get a little creative and modify/adjust practices to make things work for them. Working with healthcare professionals on symptom management strategies can help with this. Applying good habits to daily routines may improve physical health needs, especially with sleep practices. And though at this time there is no one specific diet known to influence MS and they continue to research this, maintaining healthy eating habits and a well-balanced diet can have positive effects on one’s physical nutrition. Each person is unique and what works for one’s physical health may not for another, so it’s important to evaluate behaviors and choices that can apply to your situation and what your needs are.
Another part of this physical piece includes maintenance and follow-ups when it comes to one’s care. I don’t know anyone who necessarily “enjoys” going to the doctor or hospital, but it’s one of those things that has to be done sometimes. Making sure to see your doctor regularly, notifying them if you’re having an issue or experiencing changes in symptoms are all good habits to try to enforce when it comes to your health. It’s not always an enjoyable experience having to go to the doctor or having medical tests/procedures done, but it’s a way to ensure that you’re doing all you can to keep your care in check and to maintain control over this aspect of your health. There are even tools and resources to help keep communication flowing between you and your medical team for your physical care needs. Though physicality is merely one aspect of the entire wellness sphere, it remains a vital part that contributes to all of the other elements of wellness and to one’s overall care.
This month we’ve been talking about MS symptoms that aren’t spoken about or mentioned as often as other symptoms within the MS community. Some of the symptoms highlighted so far have been issues with incontinence and bowel and bladder challenges. On the My MSAA Community peer-to-peer forum, we recently asked a poll question about which commonly overlooked MS symptoms individuals would like to learn more about, and one of the results has been cognition. Though many individuals are experiencing this issue, it’s still not one discussed very often, and it’s hard not to wonder why.
With the multitude of research that has been – and continues to be – done on MS, issues with cognition are still questioned and sometimes aren’t even associated with the disease itself. Individuals often ask if MS can affect their cognition and thinking when they notice certain changes, and the answer is unfortunately yes – this, too, is another area that MS can influence. If parts of the brain that control judgement, memory, thinking, and reason are affected by MS disease activity and inflammation, then symptoms can manifest and cognitive changes can occur. Sometimes individuals do not know that cognitive changes can be a symptom of MS and they ask if there is something else going on, or is it due to getting older/the aging process itself, or stress, etc. Bringing this and other types of symptoms that aren’t discussed as frequently to the forefront will help increase awareness of them being related to MS, and in turn, start conversations on how to address them.
There are several types of feelings that can be provoked by cognition changes due to MS, and embarrassment is a feeling that oftentimes accompanies this symptom. Individuals can feel self-conscious and uncomfortable if they’re experiencing issues with their memory and thinking—especially when interacting with others or trying to fulfill work or relationship roles. Shame and guilt can be other feelings associated with cognitive difficulties too. People feel they should still be able to do certain things and not have to ask for help or admit they can’t do what they once did. It’s very common for these types of feelings to emerge when it comes to such an impactful symptom that can effect day to day situations so easily. But knowing that you don’t have to feel ashamed or guilty if it does occur is key – and so is knowing that you can talk about it with others who are supportive and can identify with you, as you are not alone in this symptom issue.
MS sets out to be a thief not only of physical body functions, but also of mind operation as well, and it’s to no fault of those affected. It’s important to recognize if you are experiencing cognitive changes or challenges, and to bring it to a healthcare professional’s attention so you can work together to try and address it. MS may have its own agenda, but you can show your power with proactive steps in symptom management and self-care and awareness.
Earlier this month I talked about considering a staycation in regards to planning and preparing for the upcoming summer months. Not everyone may be staycationing around their home this summer so I wanted to talk about travel preparations if summer is going to take you out of your backyard. In a prior post about summer traveling, we reviewed some things to think about and prepare for when creating your travel itineraries. Considering things like accessible accommodations, materials needed for the trip, and who you can work with for assistance were some of the discussed topics. It’s important to do what you can when making travel arrangements so you can be prepared as best as possible, especially when dealing with an unpredictable disease like MS that makes its own plans a lot of the time.
While the planning piece of the trip is significant, let’s circle back to the beginning when you’re thinking about your destination. What’s important to you when deciding where to travel? What does the decision process look like? Everyone has their own needs and wishes when contemplating journey destinations; many even have a ‘bucket list’ of desires that they wish to accomplish at certain points of their life. Some individuals may have a random selection method they use to pinpoint their vacation spot—pick a point on the map and go. Others are very methodical in their decision making because there may be multiple factors that need to be taken into account to plan the journey. Either way, it’s good practice to be mindful and considerate of what your needs and wishes are and to not be afraid to fulfill them. Half the fun is in the planning so enjoy even these smallest of moments along the way.
What are some of your plans for the upcoming summer months?
Wow, can you believe it’s already May? Time feels like it’s flying by and we’ll be headed into the summer months before you know it! Many people spend time traveling and taking trips during the summertime, usually because kids have off from school and different attractions set-up shop and thrive during these warmer months. But many people aren’t able to travel abroad or from state to state for various reasons at times; so you may have to get a little more creative about how to spend these vacation days.
The word “staycation” is an expression that has increased usage within the past 10 years or so as a way to describe a vacation spent at home—spending time seeing local attractions, participating in activities close to home, or just hanging out in the backyard. What constantly amazes me is how many beautiful and remarkable sights so many people have right in their own cities! The world is filled with many extraordinary attractions and wonders, but sometimes it’s nice to be able to start at home with learning and appreciating what’s nearby. From parks and forests to museums and historical landmarks, there can be new things to explore and experience right near home. Traveling can be great, but a staycation can be just as satisfying. A staycation can also reduce stress because you don’t have to deal with long distance travel and spending excessive amounts of money; it may be more relaxing to just lay low and plan day trips and activities at your own leisure.
If you’re going to commit to a staycation, one of the most important things to do is to unplug. This means that if you are employed, disconnect from your email, and do not go into work just because you’re close to home! If you participate in daily groups or activities that you want to take a break from, this is the time to do just that. If you want to stray from your day to day and do something different, this is your opportunity. It’s tempting to stay connected because you’re not truly ‘away’ on a vacation elsewhere, but it’s still YOUR vacation, and you deserve this time as much as anyone. If you want to make other guidelines for your staycation like not using any electronics at all or not communicating to certain folks, that’s completely up to you! After all, it’s your time to do what you wish, and if your wish is for a restful staycation, then sit back and enjoy it!!
Have you ever had a staycation? What were some things you did to enjoy your time?
Ahhh Spring…a time when flowers are in bloom, daylight lasts a bit longer, and everyone tries to come out of hibernation from the cold winter months. Spring cleaning is known to be synonymous with this time as well; to rid households or offices of stale, closed up winter residue and open up to the fresher and rejuvenating seasons ahead. But this period of spring cleaning does not have to begin and end with just cleaning out closets or drawers, but rather a purging of all things unwanted, unnecessary or negative that’s affecting your life.
Now I know this can be easier said than done—things happen that you can’t control or predict sometimes or can even change, but for the situations where you do have control or a say in it, rid yourself of negativity and toxicity. If you have the opportunity to shed things that don’t add or contribute positively to your life, do it. Life is unpredictable as it is and there’s so much that we don’t have control over, so if there are moments where you can actively take charge and remove the unwanted, jump on it.
The act of purging can be cathartic; it can help you discard pessimistic thoughts and even people, which can be so very draining to deal with, especially on a regular basis. This practice may be a lengthy and emotional one because it can take time to evaluate these aspects of your life and day-to-day. To realize what should stay and what should go is an inner learning process and one that only you yourself should decide. It’s not easy breaking ties or cutting things out, but in the end you have to consider what’s ultimately going to be best for you, and finding comfort with the decisions you’ve made and to be able to move forward. Spring cleaning doesn’t have to be defined by just clearing out closets; it can be a clearing of the mind as well.
So, in talking about different aspects of wellness this month I wanted to shine light on one wellness factor that I think is very important, and probably one of the most difficult to measure—emotional wellness. Because the concept of wellness carries with it so many different implications, the emotional piece of it comes loaded with many questions and wonderings in itself. What does it look or feel like to be ‘emotionally’ well?
In a world that’s wracked with chaos and havoc a lot of the time, how many people can say that on a day to day basis that they are emotionally feeling well? Sometimes it’s impossible to keep up this façade, and rightfully so; no matter how much you try to control in your world, life decides to get in the way at times and carry out its own agenda. Obstacles, illness, accidents, frustration, and stress are all elements that can impact one’s emotions and try to change how you react and cope with things. But this is where you get to step in and shake things up; though life does sometimes enjoy giving us a plethora of lemons, we have the choice to make lemonade. It won’t always be easy, and I guarantee there are times that it’ll be even more difficult, but if you consciously choose to stay still with yourself and use the resources you have at hand, you can make the most delicious of lemonade concoctions ever tasted as a result.
One of the main components to emotional wellness is a positive attitude, and I think this is a piece that can be especially hard to maintain at times. But again, while we may not have control over the things that happen to us, we can control how we react to them, and trying to stay positive and optimistic in this may be one of the strongest weapons we have. Being able to seek support from others is another measure of this wellness puzzle piece. Now this can be challenging for many, as asking for help can be misconstrued and thought of negatively at times, but rather than see it in this light, think of it as a strength – reaching out to others in times of need shows that you are aware of and considerate of your needs and what you need to move forward. And if that means it’s a helping hand reaching out to you, then grab hold of it. You know yourself best, so if you find that you don’t have all the pieces to help you feel emotionally well, pin down what you think is missing and allow yourself to look for it.