The People Who Surround Me: Those I Keep and Seek

By Stacie Prada

As I age, I’m getting more intentional about who I spend time with and how I shape interactions. We can’t always completely avoid people who drain us, but we can shift how we approach our interactions. We can’t always spend enough time with the people we love, but we can shape our relationships to maximize our joy and connection. A lot of our daily lives involve acquaintances who with a small amount of attention can become friends. Our friends and family won’t always have the skills or perspective to meet our needs, but we can find circles of friends who will fill the gaps.

People who drain me: If I can Continue reading

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When You Get Diagnosed with Multiple Sclerosis So Does Everyone Close to You

How MS Affects Friendships

By Penelope Conway

I woke up this morning thinking about the past five years of my life. I get discouraged sometimes thinking about everything that has happened. I have days when I feel as if multiple sclerosis has flipped my world upside down and inside out. That my life, plans, dreams, and hopes have all changed more than I ever thought possible and I wasn’t prepared for the changes.

Many people go through life wishing they lived a life much like a scene from a movie where everything falls perfectly into place. Where they have Continue reading

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Relationships and MS

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

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Dating and MS: Loving and Risking Heartache

By Stacie Prada

I used to feel such relief that I was married and didn’t need to be out in the dating world. It sounded horrible, and I enjoyed having my relationship set with the expectation there’d be no divorce. Then I started having health issues and was diagnosed with multiple sclerosis after 15 years of marriage.

When a married person is diagnosed with MS, the rate of divorce is about the same as the general population, but the gender disparity is enormous. A study by the Fred Hutchinson Cancer Research Center1 found that Continue reading

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Relationships and Multiple Sclerosis

By Ashley Ringstaff

Living with multiple sclerosis is life changing for the person diagnosed, but it is also a change for our loved ones as well. I often tell people that my loved ones “Live with MS” also, because it is now a part of their lives for the long haul. It’s a learning experience and modification time for all involved. Things change when we least expect it as well, that will need modifications along the way. Meaning, if we relapse, new symptoms occur, etc.

I can honestly say that when I was first diagnosed that I pushed people away, especially my husband. I was only 22 at the time of diagnosis, and I felt like I didn’t want to make him deal with this at such a young age as well. Luckily for me, he is very stubborn and didn’t allow me to push him away, and for that I’m grateful.

There were people close to me at the time of diagnosis, which I no longer associate with. It was not my choice to no longer be friends with them, but things happen. It hurt, to have people abandon me at such a crazy time in my life. I understand now that not everyone can “handle” multiple sclerosis, even indirectly.

The state of mind I had when I was first diagnosed – I was very depressed, as well as angry. I couldn’t even tell you which emotion I was feeling more of at that time. They were pretty much dead even, but one would be more prominent at times, depending on the situation.

Many people, including myself, will tell you that you find out whom your true friends are when faced with such a life-changing event. I’ve made new friends since my diagnosis, and I have come to tell people straight off the bat that there will be times that I have to cancel last minute on plans, or I can’t give a 100% answer on if I can go to an event or not, because it all depends on other factors. Is the event outside, is it very hot outside, etc.

If you’re reading this, and you are in a relationship with someone that has MS, please be patient, especially if they are newly diagnosed. For those of you that are friends with someone that has MS, in a relationship with them, related to them, etc. Please be patient in general. Also, take the time to try and understand what we’re going through as best as you can. It makes it easier for us to vent and talk to you, when you have some sort of knowledge about multiple sclerosis, and how it affects us on a daily basis.

I have a friend that I don’t get to see as often as we would like, but she still texts me or calls me just checking on me… seeing how I’m doing… Do I need anything? I can’t even being to explain to you how much that means to me, and to many others living with MS. Just having someone there for us, it can mean the world.

For those of you that have been diagnosed with Multiple Sclerosis, you are not alone. You have so many of us out here in the MS community that will be there for you and talk to you, and just let you vent… we may need to vent in return. I’ve had so many people message me on social media, and are so glad that they have someone to talk to about this illness, that “get’s it”. Also, know that those around you might want to be there for you, but they just don’t know how. You need to let them know what they can do help you out, or even suggest some things they can read, etc. I know it’s easy to isolate ourselves, to avoid people leaving us in the long run… but then you have no one there for you in the end.

There are so many resources out there that offer ways for you to build relationships with others living with MS in your local community, online, etc. Here is a listing of the organizations apart of the MS Coalition, click here. Here is another listing as well, click here.

Whatever you are feeling and/or going through, it is never ‘wrong’. You have the right to feel certain ways, and we can’t control the way MS affects each and every one of us. We are all affected differently, but we are all in this together. I can honestly tell you that many people that I’ve spoken to with Multiple Sclerosis, want to hand out the “MS &Things People Should NOT Say” list to their loved ones, and other articles I’ve written on MultipleSclerosis.net. There is also a list my good friends and fellow writer, Cathy Chester wrote called, “What People SHOULD Say to Someone Living with Multiple Sclerosis.” This is a good article to read for the friends and loved ones of someone living with MS.

I hope you enjoyed the article, and please feel free to reach out to me on my Facebook page if you ever just need to chat.

*Ashley is a 29 year old from Central Texas, that was diagnosed with RRMS in August 2010, at the age of 22. She is a mom of two boys and loves to read & write in her spare time. Ashley is a blogger for MultipleSclerosis.net, you can view her blogs here. Her writing is mostly written with a sense of humor and personal experiences. 

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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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Someone Has to be Excited…

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.

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Relationships are…

Dear No One,

Relationships are tough. I mean, I know I’m stating the absolute obvious to you when I say that, but just hear me out. We too often think of relationships in terms of just those we date or are romantically attached to. But relationships are more than that. We have relationships with our family members, our friends – hey even total strangers we strike up a conversation with on a train platform. And they all can be taxing and draining, hard to navigate and at times annoying. They can be stressful and expensive and not just in terms of money but in emotional investment and mental space. If I’m being honest, people can be the worst. I mean really, look around and you’ll find plenty of examples of reasons why we should not like people. Just look at what they do to each other and you aren’t immune if you know someone. People can hurt the people we know just as much if not more than the people we don’t. You see what I mean, relationships… they’re totally insane!

But then things happen like the other day when it was raining and I stopped at a light and I was annoyed by the day and by the rain and by just everything and I caught out of the passenger window a woman walk up to someone on a bus stop and offer for them to share their umbrella. Just out of the blue walked and stood near them and the person, startled by the sudden end to rain pouring onto their head looked up and then over and with a look of bewilderment cracked a nervous smile and tilted their head. And the woman smiled and the light turned green.  Or when I went for a hike not far from my house yesterday evening and saw a dad picking his teary kid up off the unsteady hiking path. Just lift them up into his arms and as sure as the grass is green and the river moving told them that everything was going to be alright, they just took a little stumble. Things sometimes happen like the police officer who is called to a house to investigate a possible concern and ends up comforting a little boy who’s all alone or a teacher who has struggled to get a new student to be respectful and listen, gets an email from a foster mom saying thank you and that she’s seen a big difference at home even if there hasn’t been a big difference in class.

Relationships are tough. They’re messy and difficult. They’re taxing and at times confusing. They take a lot of energy and effort and thought. You spend time worrying if what you said was too much or too little, if you are being too intrusive or too standoffish. You rack your brain with what if they don’t understand or don’t laugh or don’t come back. And all of those are possibilities that we face and can leave little pieces of us chipped off. But being in relationships also make us richer, fuller and more colorful. They make us smile and laugh and become more caring. They make us understand and see things differently and open up. They’re tough, don’t get me wrong, but they’re also worth it. They’re worth saying Hi to the person you meet at the airport and worth smiling and asking how they are doing of the cashier at the grocery store. They’re worth reaching out to people we’ve been thinking about and worth letting those in who we’d otherwise keep at arms length. They’re worth replying to the community post someone started about feeling alone and worth getting into even if it doesn’t end the way you’d hoped. Relationships are worth it and I guess since they are…maybe people aren’t so bad after all.

Affectionately,

Me

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MS, Do you mind?

When talking about MS symptoms, many know how different and varied these can be with the disease – from the different types that can occur to their various degrees of severity, what affects one person can be very different to another. The symptoms that MS causes can not only have impact on the person experiencing them, but on those around them as well. Certain symptoms can impact relationships and unfortunately, once again, MS acts as if it has complete control over all facets of one’s life, but this is not the case. Not when individuals can do things and make choices to manage these symptoms and work hard to combat them as much as possible. It’s not easy or always a possibility, but MS has to know that it’s getting a fight from the other side and the disease is not always going to be victorious.

One of the MS symptoms that can have direct impact on relationships is issues with sexual dysfunction. This is usually a less talked about symptom and one that many shy away from discussing or disclosing. But it is one that deserves attention and awareness, because many can experience it and it’s important to know they’re not alone in this. It’s bad enough that MS causes symptoms that can impact daily routines, schedule, work habits and other factors, but really—does it also have to come between individuals sexually, in their most private moments and encounters? Come on MS, do you mind?

For those who have experienced these symptoms, one key element to battling MS in this scenario is communication. Again, we know this can be uncomfortable to disclose and openly talk about, but if these symptom issues go unaddressed, the persons involved in the relationship may not know or understand what’s going on, and if not given a chance to learn or be aware of it, it’s hard to move forward and manage with it together. Talking about it with a doctor or counselor can help to create a safe atmosphere to openly discuss what’s going on and brainstorm strategies and ways to help manage it. There can be other ways to help improve intimacy and interaction between each other, but it starts with recognizing the issues that are at play and what’s influencing them, because different factors in MS can attribute to these sexual dysfunction symptoms.

Again, MS may think it dictates everything that occurs in one’s everyday life, but there are some things that it really has no business being a part of…

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What’s the reference point?

So this past month we’ve been talking about various issues related to the topic of wellness in our MS Conversations, but what really is wellness? And how do you know if you’re truly living ‘well?’ What is the guiding point to reference when trying to determine this? All good questions, but not ones that necessarily produce easy, one word answers. Wellness can encapsulate many different factors, and its outcome can definitely be subjective at times according to each person’s view of it. It can be defined in very unique terms and the way each person lives their life can differ because of this. That’s not to say that one person’s take on wellness is better over another, it’s just different and relative to their own needs.

There are many components to the notion of wellness and that’s why its possibilities are abundant. Capturing not only the physical piece, but the emotional, spiritual, social, and intellectual factors too, also contribute to the vast definition of what wellness means for each person. It’s not measured by just one part but by many, and who’s to say that if a person focuses on one piece of it at a time that they’re not still living ‘well’ in their own understanding of it. That’s why it’s so hard to quantify exactly what the picture perfect frame of wellness is; everyone is different and lives by distinct belief systems and practices. Because the concept of wellness can change so subjectively, it’s challenging to try and identify an exact point of reference for it. So instead, ask yourself questions that gauge your own well-being and include things that are most important to you—health, spirit, relationships, values, beliefs, the list can go on…

 

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