What to do with the MS Burnout Blues…

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

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The Value of Doing Nothing: Same Thing, Different Feel

By Stacie Prada

It’s interesting to me that the same task can feel stressful sometimes and relaxing others. It really shows that it’s not about what I’m doing, rather it’s how I feel when I’m anticipating or doing it. It’s how I judge the task in the moment.

Needing to cook dinner after a long workday may feel like one more burdensome thing that needs to be done, while spending hours in the kitchen baking or creating a new dish on a weekend might be a therapeutic activity resembling meditation for the focus and relaxation I feel.

The same can be true for Continue reading

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Support for the Supporter

Care partners are a vital source of support and assistance to those living with chronic illnesses like MS, and it’s important to realize that they need just as much care and support for themselves in order to maintain that role of care partner to others. Self-care often falls by the wayside as burnout and exhaustion from daily caregiving tasks overpowers all else; that is why calling out some of the crucial resources and services available to care partners is so important. In a previous post we talked about some of MSAA’s resources for care partners, so we thought it would help to expand on this to include some other types of community sources of assistance.

Offices of Aging and Disability Services:

These offices provide resources and services for caregivers that include respite care, homecare assistance and other community programs. Individuals can search by location for this office contact:

https://eldercare.acl.gov/Public/Index.aspx

Centers for Independent Living:

These centers offer information and referral services as well as some direct programs to those living with disabilities and are a good source of information to caregivers. To find one’s nearest location they can search by state/city/county here:

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory

ARCH National Respite Network:

Resource providing a respite services locator, funding and caregiver support contacts, webinars and publications for caregiver needs:

https://archrespite.org/

Family Caregiver Alliance:

Organization that does policy and advocacy work for caregiver needs; they also offer caregiver education, online support groups and links to state by state resources:

https://www.caregiver.org/

Caregiver Action Network:

An organization providing education, peer support, and resources to family caregivers across the country:

http://caregiveraction.org/

Veterans Caregiver Support:

Support resources and tools are provided to those caring for veterans. Resources are also provided for specific conditions that include MS:

https://www.caregiver.va.gov/

https://www.caregiver.va.gov/Tips_by_Diagnosis/MS.asp

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This Year I Will…

Oh the New Year…. Everywhere you see signs, commercials, social media posts and billboards advertising “New Year, New You.” We all make resolutions to get to the gym, cut out the junk food, meet Mrs/Mr Right, get out of debt, budget better and there is nothing wrong with any of those things!! We could all use a better budget and probably to eat less simple carbs… especially after the holidays. But this year be encouraged to not create a brand new you, but finesse the you that’s already there and Do Less or Do More. Radical changes that turn things on their heads usually tend to end in disappointing failure which can cause even the most devote of us to doubt if we are ever going to be capable of change.

But what if instead we took stock of what we wanted, were honest with ourselves…not with our best intentions but with our real selves and instead of resolutions made Less/More lists. This year I have decided to Waste Less… of not only nature’s resources but also my time and energy on things that are not good for me. I’ve decided to Judge (both myself and others) Less in order to extend grace and understanding, to be Hurt Less in that every painful situation should not derail me continuing to live my life to the best of my abilities. To Doubt Less in my abilities and talents, in my own worth and potential and to Fear Less… to let fear have it’s rightful place but not take over from me the joy and growth that new experiences and tough situations can bring forth. I also decided to Reflect More on my surroundings and my place in the world, to Care (for both myself and others) More in that it’s ultimately my responsibility to be there for myself and I can extend that care to others until they are able to do so for themselves also. I decided to Explore More and Read More of the world around me in order that I can Grow More from experience and Learn More from others. I also decided to Accept More both the things I cannot change but wish I could, the people I encounter who are who they are and my own shortcomings and missteps. I have decided to Reach Out More to others, Connect More with the community and people around me and Love More in situations that I could use or might even feel called to insert hateful words, closed ears or turned backs, to decide that in spite of everything I will Love More.

I don’t need to be a New Me in this New Year… I needed to take stock of the things most important to me, evaluate and be honest about the things and people in my life and what I want from my life in order to come to the decision that this year…. This will be the year of More and Less of what I decide to make it. So what will you make it??

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Priority Number One: You

At the beginning of a new year, many people make resolutions for ways to make this calendar year better than the last one.  Some of the most common resolutions made at the beginning of the year include: dieting, exercising more, learning to budget money better, spending more time with friends and family, and learning a new language.  One resolution you might consider is learning to prioritize your own wants and needs, especially when it comes to living with MS.

It can feel selfish to focus on yourself and your own needs, but that doesn’t make it unimportant. We are able to give more of ourselves to the people and things we care about when we have first taken care of our own bodies and wellbeing.

Living with a chronic health condition like multiple sclerosis can force you to become better attuned to your body’s needs as the severity of your symptoms change.  Each person knows their body better than anyone, and knows their limitations (whether we choose to acknowledge them or not).  If you feel you need time and space to focus on a particular physical, emotional, mental, or spiritual need this year, make the time to do so.  Family, friends, hobbies, work, social life – they are all important, but so is your overall health and wellbeing.

This year, challenge yourself to create a new habit – choose at least one activity a day that helps you focus on self-care (and let us know in the comments how you are doing it)!

For more information and strategies for overall wellness this year, check out MSAA’s Overall Wellness section on their website.

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New Year, New Beginning

As it turned midnight on January 1st of 2018, I think a lot of people, including myself, held hopes that this new year would bring with it more optimism and hope, especially more so than its previous 2017 counterpart which brought controversy and devastation throughout the year. Entering a new year can mean new beginnings for things and more possibilities, but most importantly, a chance to reassess what your needs are and how to fulfill them. For some this may be physical needs as it relates to the body and addressing medical issues or concerns. For others this may mean focusing on emotional or spiritual needs and how this influences day to day and self-care. No matter what the needs look like, the beginning of a new year represents another fresh start to prioritize things and to take care of you.

It’s not always easy to do this with the chaos each day can bring, but that’s why you prioritize, so certain things take precedence over others when there’s not enough time in the day for everything. It may come down to making to-do lists with tasks and goals and crossing things off one by one, or setting one specific need as a goal to focus on for the week or entire month. The method of prioritizing needs doesn’t have to be perfect and it surely won’t look the same for everyone; it’s going to be tailored to each person and what their specific needs are. But it all begins with an act of self-respect; to increase awareness of what it is that’s needed and telling yourself you deserve it.

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How Do You Create Space?

Though it doesn’t feel like it in most of the country, Fall is officially upon us. There’s the activities and the get togethers. The smells and the lead up to… the holiday season! Arguably fall is my favorite time of year and easily also one of the most stressful. In gearing up for the pending holidays, trying to enjoy outings with loved ones and friends and preparing for the end of the year in terms of work and personal life (I’m someone who likes to file my taxes in January if I can help it to get them out of the way) I inevitably run into a wall of burnout. It’s not permanent and to be honest is totally avoidable if I just created some margin. I know, it’s easier said than done when the kids, the spouse, the job, the (insert religious organization you belong to), the neighborhood watch, the scout troop or sports team, the friends, the family…the lists go on… all need something and they need it soon. If you are anything like me you’re a doer. But doers…they need margin most of all. We have to build in safe guards and set boundaries to make sure that while we’re caring for and participating with others, we’re also monitoring and taking care of ourselves. That we don’t run into the situation that we run totally out of steam, burning the candle at all ends and find ourselves in the dark.

Like I said, it’s easier said than done but just think how much better you’d be if you weren’t laying under the desk completely done at the end of the week. So, what have I done to help create space and boundaries for myself? I have people in my life who understand my doer mentality and essentially pull the plug from time to time. They’re there and not only listen to the litany of items on my ever growing To-Do list but also challenge me and say ‘Can someone else pick up the donations from the restaurant’ ‘Who can you call to finish making the activities for the carnival’ ‘Do you need to volunteer to run another event’ and most importantly, ‘What have you done this week that’s just for you’. They ask not because they are nosy or because they are looking to judge or condemn me. No, they ask because I’ve let them in and given them permission to tap me on the shoulder when it looks like I’m headed for the red zone. And vice versa, I’m part of their team. Their team that pulls them from the edge when they’re baking for the 5th bake sale this month or about to volunteer to run the fundraiser that drove them insane last year. You should surround yourself with people who you trust to step into your life and help you keep up with the boundaries you need…not the Jones’ down the block. So how do you do it? How do you build in the buffer? Because creating space and implementing margins in our time and energy may not feel natural at first if you are a doer, but it’ll help keep you from smacking into the wall of exhaustion…and who doesn’t want that?!

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The Not So Good Relationship

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:

  • Lying
  • Being unapologetic
  • Manipulative
  • Abusive
  • Narcissistic
  • Spiteful

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.

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Caregiver Wellness

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.

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Why Self-Care?

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 🙂

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