To the most influential people in my life

By Penelope Conway

Influential people in my life by Penelope Conway MS Conversations blogLife is a constant flow of people who come in and out of our lives. I have lost and gained many meaningful people over the years. Multiple sclerosis seems to have helped me in the weeding out process. It did that quicker than anything else I have ever faced. I’m not sure if it’s because of my constant unpredictable days or my need for help just to handle the simplest of things in life, but to the ones who have chosen to stick around, I’m forever grateful.

You are the ones Continue reading

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My Mother’s Lasting Influence

By Stacie Prada

As a young child wrapped in my mother’s arms, I’d hear her ask me, “What am I going to do with you?”

I’d answer in tempo with the script we’d created, “Hug me, and kiss me, and love me forever.” She’d squeeze me harder while kissing the top of my head, and I knew she would.

She died suddenly at the age of 47, and she never knew I had multiple sclerosis. This was 15 years before I was diagnosed with MS, yet she’s been a constant companion as I’ve navigated my life in general and the challenges I face living with MS.

Throughout the past 25 years, 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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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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Being ‘Emotionally’ 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.

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This is Spring? (When expectations don’t quite match realities)

So the spring equinox supposedly arrived for us living in the northern hemisphere on March 20th this year, marking it as the first official day of ‘spring.’ However, for those of us living on the east coast, it hasn’t quite felt like spring this past week. When it comes to weather changes we can usually deal with the clichéd ‘April showers bring May flowers’ notions, and even March’s infamous reputation that it ‘comes in like a lion and out like a lamb,’ because we’re hopeful that the next beloved season is right around the corner.  But with temperatures in the 40’s and flurries impeding on morning commutes this past week, it appears that spring has decided to abdicate its duties (at least for the time being). Not quite what we expected so far, right?

Ok, now the weather has been increasingly unpredictable over the years due to a number of factors and elements so it’s not a total surprise that our desired seasons don’t occur quite how we hope. But it further highlights this notion that sometimes what we expect to happen doesn’t quite match reality; and this becomes the continued barrier we encounter and struggle with through all phases of life. We know that life itself and the day to day can be very erratic—with varying degrees of triumphs or defeats, but when additional factors are added to the mix it can be even more challenging to match expectations to reality. No one holds the expectation that they will become ill or be diagnosed with a chronic illness, so again reality doesn’t match up at times.

When expectations aren’t met and life continues to generate its own agenda-not taking into account how you feel about it, this can be extremely frustrating and overwhelming. So when this happens, what can you do? How can adjustments be made or things tweaked so you’re not getting constantly knocked down or totally thrown off course when life throws a wrench in your plan? You can PUSH BACK. Now this can be very much easier said than done sometimes, but how else can you let life know that you’re still very much a part of it even though it may not be what you expected? And this doesn’t have to look a certain way. Each person has their own unique personality and attitudes and the ability to use and embellish character strengths to the exponential degree. You demonstrate resilience and take control over how you react to changes you encounter. You work on showing life how its changes will work around you and your needs, not the other way around.

Again, this is not an easy thing to do. It can be devastating when life doesn’t work out the way we hoped and expected it to. But this is where there can be strength in numbers-where people can reach out to others for support and find hope. Learning what others have done to overcome a situation, where they’ve found their strengths and how they’ve pushed forward can be incredible assets to embrace. Everyone has experienced moments where reality doesn’t happen like we expected, but we find ourselves together in that, and once again surrounded by potential hope.

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Making Friends and Finding Support

Making friends as an adult can be a challenge. Often the friends we have as adults are those we have grown up with, either through grade school or college. Sometimes those friendships change and we find ourselves looking for new friends, or friends that share a common interest, skill, or lifestyle.

Individuals diagnosed with MS may be looking to make connections with others that are diagnosed, but have a hard time meeting people face to face. There are several opportunities available to promote friendships and support to those diagnosed and their family members.

Social media can be a great way to get connected, just be comfortable knowing that your diagnosis or personal information can be shared online. Facebook groups allow individuals throughout the world to connect and share information; search in Facebook ‘multiple sclerosis’ and find a number of private or public groups. Online message boards such as MS Connection or MS World can also be an effective way to find individuals who are interested in a certain topic.

If online communication is not your thing, MS Friends, a program organized by the National MS Society connects individuals with MS through a telephone service. You can contact 1-866-673-7436 and speak to an individual with MS. MSAA also offers a Networking program, which can connect individuals through letters or e-mails.

With so many options to get connected, how do you stay in contact with others?

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To Know, Or Not To Know?

That is the question, at least today as it pertains to learning about the disease of MS. As we close in on a month dedicated to MS awareness, many individuals still do not know much about this rare disease. One challenge lies in the fact that the information available on MS can be very overwhelming at times, especially as the internet alone exudes multiple portals of literature and resources about the disease. This can sometimes have the opposite effect on education; rather than pulling people in to learn more, it actually sometimes intimidates people to the point where they shy away from learning more about it. This is completely understandable – MS can be difficult to understand and grasp, so it’s a process to educate oneself and others about it. So the question is, is it better to know, or not to know?

When MS touches the life of someone you know, love, interact with, or share a history with, it can be hard to comprehend what this disease is that’s affecting that person. If you didn’t have knowledge of what it was before, this may be a whole new learning process for you as well. Being part of someone’s support network keeps you tied into what’s going on in their daily experiences, so knowing what MS is and its process can help keep you informed of what they’re going through, and how you may be able to offer support when needed.

It’s not something that can be learned or taught overnight. It’s a process – and one that doesn’t have to be done alone. Talking about MS with family members, friends, peers and other support resources can aid in the significant education piece that comes with the disease. Learning more about it is the first step in knowing what it is and how you can offer your support. It can start with just an overview of MS information, and lead into further discussions and outreach. It’s also important to know that it’s ok to take your time learning about MS – review the information as you’re comfortable doing so at your own pace, and when you have questions reach out and ask. In the matter of MS, the act of knowing can be more beneficial than not.

Share something new you’ve learned about MS…

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National Love Your Pet Day

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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?

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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

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