Positive Surroundings

I recently saw a quote that said “Negativity may knock at your door, but that doesn’t mean you have to let it in.” This really resonated because there are times in life that negativity does try to seep in and corrupt happiness and positive feelings. It emits toxicity and wants to take control over everything – and sometimes it’s hard not to feed into it and become consumed by it, especially when it presents with life circumstances that are unexpected and unwelcome.

It’s inevitable that at some point throughout life everyone experiences difficult times that unfortunately they have no control over. Things happen, obstacles or illnesses that we can’t foresee, but it’s important to know the aspects of your life that you do have control over. The people and influences that you choose to make a part of your life can be positive ones – you can make the choice to surround yourself with positive reinforcement and encouragement by choosing who you want to be a part of your inner support network. Are there times that we can’t control who are a part of our day to day lives? Of course. But sometimes you can control the frequency or duration of these interactions with others – even though sometimes this may be more difficult to accomplish. Let’s say if it’s family or friends that emit negativity, it can be more challenging to control and limit these exchanges because of the nature of the relationship. However, if there are moments that their negativity is all consuming and blocks out all that can be uplifting and positive, you can respectfully remove yourself from the situation.

One way to decrease negative energy is to purposely and consciously surround yourself with positive energy. Doing things you enjoy, communicating with others who make you feel supported and inspired and letting yourself experience good moments are ways to increase affirmation and optimism. When you have the chance to remove yourself from a negative encounter, be sure to book end it with a positive one, so that way at the end of the day, light conquers all.

Share

Sometimes Things Change…

Change is something that can be unavoidable at times and not always favored, nor asked for or necessarily welcomed. Though sometimes it can be difficult, there may be times when change is needed to make certain things more manageable. As it can be known to cause shifts in all types of roles, relationships, plans, or daily routines, adjusting to change can have impacts not just on yourself but those around you as well. One of the significant pieces needed throughout the change process is communication. Communication with family, friends, support networks, medical teams and others within your circle is important to be able to discuss what change has occurred and what can be done to accommodate it.

When dealing with something like a chronic illness, change can particularly affect family and relationship roles and dynamics. This can be difficult for all the family members involved. It can be difficult to change a routine and how things used to flow from one day to the next.  Say one family member has been known to be the ‘caregiver’ to the others, taking care of the household duties and responsibilities. What if they suddenly need to be the one being cared for due to an illness? This can create a shift in how the household duties are shared and now need to be assigned to others.

Communicating how these changes affect the relationships is important. Feeling frustrated, confused, or even angry at times is ok because things are different. The critical point is to make sure that these thoughts and feelings are expressed to ensure that all people feel they are heard and that their feelings are validated and valued. Seeking some type of family counseling supports can be beneficial to talk about change in a safe and open format—so that all of those affected can discuss it.

Has change affected any of your relationships? How did you approach this?

Share

Building a Relationship with Your Healthcare Provider

Not long ago, patients expected their doctor to tell them what to do about their health and doctors expected patients to follow orders. With the growth and expansion of technology, individuals are given an opportunity to read medical journals, watch health-related television, and visit information sites regarding their specific condition.

With the expansion of medical knowledge, there has been a shift in the doctor-patient relationship. Patients are now expected and encouraged to ask questions and have medical discussions about their care. Some doctors are more open to this relationship than others, so how do you build a relationship with a doctor who may not be as open to this type of relationship?

Communication in any relationship is a key factor; having a discussion with your doctor about what you are and are not comfortable with is very important. By having this conversation, assumptions about what you may or may not know about your disease, or the treatment options is avoided. You have a right as a patient to receive appropriate medical care and the right to have your voice heard.

Just like any relationship, if you do not feel comfortable or feel as though your voice is not being heard you have two choices, leave the relationship or work to change it. Have you had to have a conversation with your doctor about your relationship? What was that like for you? Do you have any advice for others?

Share

Hi! It’s nice to meet you. What do you do?

Such a direct question, right out of the gate! And it’s one we encounter often when meeting new people – report your name and occupation for informational purposes, please. Because of the nature of this interaction (which feels very unnatural at times), meeting new people can be intimidating. It can be an awkward situation with pressure to ask or answer certain questions that may be sensitive to you or the other person. It can also be stressful to open yourself up to new people because the outcomes can be uncertain. How will the other person interpret what you said? Will they be accepting of you? And the detailed request to explain what you do rather than who you are can feel uncomfortable too, especially for those who may not currently be in the workforce to identify themselves as their work first.

Ok, so new conversations don’t exactly occur like this: “Hi, I’m John. I like traveling, going to the opera, and fishing.” But they don’t necessarily have to evolve into interactions that make you feel like you’re filling out paperwork at the DMV either. There can be a balance, where you can actually learn about the person’s character and their likes before judging them solely by what they do or don’t do for a living. It may not feel like it, but perhaps those who are no longer working are at an advantage at times in this new meeting scenario. This leaves the discussion open to actually discussing matters that are not just work related!

Other topics of conversation can be brought into the encounter and people can learn who the other person is and not just what they do. Maybe this conversation flow can include “tell me something about yourself,” thus creating a whole new direction of discussion between new people.

Even though meeting people can be scary sometimes, it can also open up so many exciting doors for increased interactions and forming relationships with others, which can be of great value!

How do you meet new people?

Share

National Love Your Pet Day

photo

In honor of National Love Your Pet Day, the “unofficial” national holiday set aside to give extra attention to and pamper your pet that you love every day. This is a good day to focus on the special relationship that you have with your pets.

Having a pet has proven to provide many physical as well as mental benefits. Therapeutically, a pet can lower blood pressure and have a calming effect over an individual, which can lead to diminishing some pain symptoms. Pets also encourage communication (who doesn’t talk to their pet), as well as provide support and comfort.

When feeling anxious or nervous about a new situation, perhaps lean to your pet for support. A pet is a perfect soundboard for thoughts and feelings and even better, they can’t talk back! Maybe there is an uncomfortable topic you wish to discuss with a loved one, try practicing speaking out loud to your pet exactly what you wish to say. The extra practice in expressing your thoughts can provide confidence and re-assurance in the situation.

While your pets can’t role play the situation back with you, having practiced saying a thought or feeling may help alleviate some of the anxiety around the situation. It may also provide you with the opportunity to hear how your words would sound to another person. Have you ever made a comment and then realized ‘that wasn’t what I meant to say.’ Practicing beforehand allows you to make changes to ensure that your message is properly received.

In what ways is your pet a support to you?

Share

Loving Yourself First

What is love? Webster’s dictionary defines love as “a feeling of strong or constant affection for a person”. After a day like Valentine’s Day, it is hard not to question the concept of love. Perhaps you are in a long term relationship, maybe you have yet to find love, or have just ended a relationship. By definition, love doesn’t solely rely on a relation with another person, it can define the feeling you have for yourself as well.

Truly loving yourself and having the respect for the person that you have become can be a challenge for some. Uncontrollable events occur in life that may change the way that one perceives themselves. Perhaps there are goals or outcomes that seem unmet, or feelings that are unresolved. Coming to a place of understanding and acceptance of the uncontrollable events and embracing the change they may have created is the first step in loving who you are as a person.

By accepting the changes that have occurred, you allow yourself to move forward without any self-doubts or negative thoughts. But this too is a process. One does not wake up one morning and choose to accept the many years of life’s up and downs. Daily affirmations or positive thoughts about your self can be an effective way to practice self-love and acceptance. You can create your own, or utilize one of the many that can be found in books or online.

The Law of Attraction states, “like attracts like”, meaning, what you put out into the world, is what you attract. If you feel positively about yourself and love yourself, you will attract that same level of positive energy in another. When you don’t like yourself, or don’t feel yourself worthy of love, it can be difficult for someone to find that in you as well.

The change to a place of self-acceptance and love cannot occur overnight. If you feel as though you need additional support or help in removing the self-doubts or negative thoughts, a counselor may be able to assist in getting to the root of those feelings. Everyone has a right to be accepted and loved, personally and by others. If possible, seek help from a support group or counselor. It is never too late to make a change.

“The turning point in the process of growing up is when you discover the core of strength within you that survives all hurt” –Max Lerner

References:
http://www.merriam-webster.com/dictionary/love

Share

The Impact of MS on Everyday life

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

MSIA children impact

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

MSIA support system

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

Share

My Silent Hero

By: Sheryl Skutelsky

After years of having every part of my body in pain at various times through my twenties, I’ll never forget the day in October 2001 when I finally heard those words, “You have multiple sclerosis.” I didn’t yet really know what those words meant, but I was relieved to finally have a name for what doctors had been telling me for years was just stress.

I went home that day to look MS up on the computer, and I have never stopped learning. Knowledge is power, and I truly believe that my attitude has a great deal to do with how I live my life with MS.

I was very excited when I was offered the opportunity to write for MSAA because it meant I could reach more people with the valuable lessons that I’ve learned over the years.

I’ve been blogging about MS now for years, having covered topics that range from explaining what MS is all about to how to deal with summer heat. However, I have never written about the person that has been my rock through all my ups and downs.

My partner not only has to imagine what it’s like each day for me to deal with pins and needles, numbness, shooting pain, aching, dizziness, nausea, and overwhelming fatigue, but she also has to live with the same uncertainty of waking up each day and not knowing if we can do the things that we had planned. She is the only one that truly understands how I can look so good on the outside and feel so miserable on the inside. She gets it when I have to cancel plans because I did too much the day before.

When we met, I was relatively healthy. She did ask me what hurt every day. It got to the point where she asked me if my left earlobe hurt because she was just trying to find some part of me that didn’t hurt, but she didn’t sign up for a chronic disease. That news came as a shock to both of us.

Thanks to MS, I’ve learned to truly take one day at a time. I wake up grateful for each day that I can walk, but I also wake up grateful that I have someone in my life that will stand by me no matter what. It would do us all good if we remembered to let our significant others know how much we appreciate all that they have done for us by sharing in living with the uncertainty of life with MS.

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

 

Share

It’s all relative.

rsz_african-american_female_doctor_counseling_distressed_young_female_patient

Sometimes it may seem like things are spiraling. Maybe the bills are piling up, the stress level in managing home life or work is rising, and you are worried that you are headed for an MS Relapse if you keep going at your current pace. When things feel like they are outside of your control, it is easy to “cycle”  or consistently think of the negative aspects of what is going on. The whirlwind of negativity can affect not only your mood and health, but also your relationships and ability to accurately read cues from others and be empathetic.

When your co-worker is acting totally checked out and you are annoyed that she hasn’t helped you with a joint project, you might think she is acting uncaring, but maybe she didn’t tell you her brother is very sick in the hospital. When the dentist office calls for the third time to cancel your appointment and you just feel like screaming at the scheduler, you may not know that she is stressed out because other office staff keep flaking out on their scheduled appointments and making her job harder.

Yes, it is okay to have a bad day or a bad week. It is okay to not put on a “fake it ’till you make it” smile when you feel like nobody understands what you are dealing with, but when you start to get caught up in the negativity tornado and are on the borderline of snapping, remember that everyone is dealing with something. Yes, some of those “somethings” are more manageable than others, but they all impact and make a difference in the lives of the people living them. Focusing on the idea that everyone is living their own journey with different successes and challenges can help us to maintain balance; we are not alone for the ride. When things start to spiral, try to remember that everything is relative.

Share

Communicating Effectively with MS

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purposematt blog

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Share