Creating the Support Network I Want

By Stacie Prada

Living with a chronic and progressive illness like MS includes living with fear, pain and diminishing abilities. It’s rough.  It can make me grouchy and impatient. But it’s not a pass to treat people poorly. It takes more effort to be appreciative and pleasant when I’m tired and feel crummy, but it’s a tremendous life skill to cultivate.   Sometimes I succeed, and sometimes I fall short of my goal.  When that happens, I follow up with that person and try to repair any damage.

I’d rather people support me because they want to be there with me.  If someone is helping me solely out of obligation or pity, their resentment or condescension will come through in every interaction.  No thank you.

Feeling like a burden isn’t helpful to anyone’s physical or mental wellbeing.  And being treated like a burden isn’t fair.  Every person has challenges and limits, and we all have needs. Needs aren’t weaknesses. Some of our needs are just more visible or less common compared to what’s thought of as normal.

My best relationships are those of mutual admiration and appreciation.  We help each other often, but we make sure we respect our limits so that nothing is done with resentment.

I’ve put together some guidelines for myself to build healthy and positive relationships:

  1. When people show kindness or concern, accept it graciously. If I discourage it because I’m embarrassed, grouchy or feeling like they’re being pushy, they’ll eventually stop asking or providing support.
  2. Notice when I feel better about myself after interacting with someone. Put extra effort into connecting with them.
  3. Notice when I feel worse after interacting with someone. Consider possible reasons, and be honest about whether it’s me or them. See if there are ways to improve the relationship.  Let it go if it’s not a critical relationship. Pursue sincere conversation or counseling for the relationships I’m not willing to let go.
  4. Know that letting go of some relationships will be necessary for my health. This is really tough. Try to wish them well and move on.
  5. Be a cheerleader for others. Share in their joys and accomplishments genuinely and without jealousy, and express sympathy and encouragement when they’re having a hard time.
  6. Be willing to accept help. I’d love to be completely self-sufficient and strong, but refusing help pushes people away. Remember accepting help might make them feel better too.
  7. Grant people grace when they periodically commit a friendship blunder. Hope they’ll do the same for me. People will never respond perfectly in every situation, and anyone expecting perfection is being unreasonable.

Striving to follow these guidelines has improved my relationships immensely, and it’s created a positive support network that I can count on when I need it. We support each other and don’t keep score. Having them around makes every challenge easier to tackle and every loss more tolerable to accept.  Plus, the effort I put into adding positive energy in the world helps me feel I have value and just plain feels good.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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It Takes a Village to Navigate This Life with Multiple Sclerosis

By Penelope Conway

Do you know that old saying “It takes a village to raise a child”? Well, I happen to know for a fact that it takes a village to navigate this life with multiple sclerosis.

I was always an independent person. One of those “I can do it by myself” kind of people. I could change the oil in my car, repair a leaking pipe under the house, open those impossible pickle jars and move furniture without even breaking a sweat. Having to shift that type of independence after MS came along was really hard for me.

I found that I needed help getting to appointments because my eyesight and motor function had decreased making it unsafe for me to drive myself, especially if going long distances.

I needed reminders (albeit sometimes annoying) for some of the simplest things in life like “be sure to set your trash out today for pick-up.” Something I wouldn’t have forgotten in times past.

I needed help pulling wet clothes out of the washing machine because my hands just couldn’t properly grip the wet clothes. Then folding the clothes and towels once they were dry would take me hours to complete.

I found that there were tons of things I needed help with. As an independent, I-can-do-it-myself kind of person, that was not an easy thing for me to come to terms with but it has gotten easier over time. I can still be a bit stubborn, but I know my limits and reach out when I know I need help.

If I can enlarge my circle of support, I am always willing to give it a try. I was even talking to my neighbor yesterday about calling on her if I have trouble opening those easy-to-open packages that aren’t really easy to open or when I can’t get a pill bottle open. She was more than happy to be asked to help out.

One thing I found to be extremely important is to let those that are helping you out know just how much you appreciate what they are doing. If they know you value their support, care, and love, it gives them a sense of purpose and they know that the things they do matter. Even the small things like picking up the mail or stopping by for a chat should never be taken for granted.

People need to know the time they put in to helping you makes a difference. They may say you don’t need to thank them, but thank them anyway. It always matters.

I have had some people that would always drag me down with their know-it-all advice and negative attitude, but do you know what I did? I cut my ties with them. Sometimes that is the healthiest thing you can do. MS is not any easy things to deal with and you don’t need any added stress to your day making things worse. Set up boundaries and don’t back down.

Surround yourself with positive people that lift you up.  You deserve to be happy.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Coping With the Diagnosis of Multiple Sclerosis

By Meagan Freeman

Hypervigilance: “Abnormally increased responsiveness to stimuli, and scanning of the environment for threats.” (The Free Dictionary, 2014.)

The longer I live with the diagnosis of MS, the more convinced I become that the most difficult and life-altering consequence of this disease is my constant awareness of its existence. I have relapsing-remitting MS, and the very essence of my disease involves periods of relapse, with severe symptoms that affect my entire world, followed inexplicably by periods of near remission.

This is something we slowly learn to live with, this uncertainty, but it never becomes normal. It is almost like being robbed of our innocence, our ability to feel at ease is taken forever. Even in periods of relative remission, we are followed by a dark cloud of uncertainty.

This state of alertness is designed to protect us from threats and danger, and it serves a much-needed purpose in those situations. When we are in an acutely dangerous environment, we must have the ability to respond. Our heart rates increase, our respiratory rate increases, our blood pressure rises, and our pupils dilate to allow us to respond to the impending destructive force headed our way.

What happens when we are in this state of alertness and vigilance for an extended period of time? In the case of multiple sclerosis, we are in this state for the rest of our lives.. Never again (without an absolute cure) will we feel utterly at ease.

Extended periods of hypervigilance will eventually lead to secondary problems. The main issues become anxiety, insomnia, fatigue, and social withdrawal/seclusion. Many MS patients begin to withdraw from normal social circles, becoming so overly-focused on the disease in exchange for formally enjoyable activities. This experience can be even more devastating than the physical symptoms.

In my own life, I found that I would wake up in that early morning haze, just barely conscious from my sleep, feeling peaceful from my last dream, and immediately upon opening my eyes it was as if a voice would scream into my ear: “YOU HAVE MS!!!!!”

I would feel my heart start to race, I would sit upright, and the crushing blow of diagnosis would sink in yet again. This experience repeated itself daily for the first couple of years post diagnosis. It was very hard for me to communicate this experience to anyone I knew. I had no close friends with MS, and I did not believe my family would understand.

Soon, I became obsessed with scanning my sensory experiences, looking for a new symptom. Each day, there was something new. A new buzzing sensation, a new numb area, a new area of skin that felt “sunburned” and painful, and several times, new onset of blurry and dim vision. I have lost much of my vision in the last 5 years. I went from having 20/20 vision 5 years ago, to 200/100 today due to repeated bouts with optic neuritis.

When we live with daily fear of new deficits, we change. That feeling of “what new symptom will I wake up with tomorrow?” How do you live your life? How do you plan your work? Your children’s activities? Your driving? Many of us like to carry on like brave soldiers, but in the end it is sometimes better to plan for the worst and be happy if it isn’t that bad after all.

Here is the good news: You can learn to manage this issue. If you find yourself staying home rather than enjoying your normal activities, losing sleep worrying about MS, feeling tremendous anxiety, or any other life-altering symptom, get help. Sometimes it is as simple as finding the right support group. Sometimes, individual or group counseling is helpful. The point is, don’t just suffer alone needlessly. And most importantly: Don’t feel like you are “crazy.” You aren’t!

Sometimes, I just want to hear reality, don’t you? I want to hear that I am not insane, that this experience is real, and that others are going through similar experiences. Connecting through mutual struggle is something I find incredibly necessary in the case of any chronic condition, especially MS. I am hopeful that my sharing of my own experience will help someone out there having a particularly difficult day. Reach out, because you are most definitely not alone in your experience.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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What Should I Say?

Someone you know has just been diagnosed with multiple sclerosis. You’re not alone if you are one of the many people that aren’t sure how to approach this situation. ‘What should I say?’ Or ‘what can I do?’ are questions often asked and contemplated by those surrounding an individual who has been diagnosed. Unfortunately there is no specific script or dialogue mapped out that can guide this interaction, however, there are some things to consider when communicating about MS. Being mindful, respectful, and considerate of others’ feelings and sensitive to the circumstances are good starting points in this situation.

If you’re not familiar with MS and do not understand the disease, this is ok. MS can be a challenging condition to absorb information about and there is a significant learning curve when it comes to educating oneself about the disease. It’s not something to be learned overnight, so knowing this going into the situation can help reduce stress and expectations. Telling the other person you’re not sure what MS is but showing interest in how they’re feeling and learning about the disease can open this communication exchange. Sometimes just saying ‘I’m here for you, and if you want to talk I’m happy to listen’ can make the other person feel comforted knowing they have support if they need to reach out.

Many people may feel pressured to not say the ‘wrong thing’ or worry if they don’t react in a certain way when hearing of an MS diagnosis. This can sometimes circle back to your relationship with the individual who has been diagnosed and how you’ve interacted and communicated. You may already have an idea of what would be helpful for them to hear or to not hear in the situation. Your relationship with the person has not changed, so maintaining a balance of support and a matching bond as before can help steady this novel circumstance. Validating their feelings and the symptoms they talk about experiencing can help guide the conversation; be sure to listen and engage with them so they know they’re being heard.

Often the person diagnosed with MS may need time to process the news of a diagnosis, and this may lead to them subsequently distancing themselves or refusing help from those around them. You can’t force someone to ask for or accept help, or push them into disclosing their feelings. So in these instances telling them ‘I’m here if you need me,’ and ‘I care about you’ can be a support in itself—and knowing they have supports in place when needed can be reassuring to those diagnosed.

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Remembering the MS Support People

By: Sheryl Skutelsky

I’ve personally switched MS medications 3 times over the 14 years since I was diagnosed. It was a little over a year ago that I went for monthly infusions.

I would walk into the infusion center, and no matter how hectic it seemed at times, there was Kristen always smiling. Especially in the beginning, this was a place of fear for me. My veins saw a needle coming, and they would literally slide to the side. Kristen had the patience of a saint, and the most amazing bedside manner.

Unlike so many, I wasn’t doing well on the medication. I began to experience severe joint pain, and I finally had to give up and move on to the next medication.

However, I will never forget the difference it made in my life to have a nurse like Kristen. She cared about each and every one of us, and I swear she could do 20 things at once and get them all right.

To this day whenever I visit my neurologist, and he says that I need bloodwork done, I’ll patiently wait until Kristen has a free moment – not just because she’s the only one that can find my vein on one try, but because her smile can light up anyone’s bad MS days.

*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.

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Online Support for Caregivers of People with Multiple Sclerosis

As a caregiver or care partner it can frequently be a challenge to actually make it out and about town. While an in-person support group or activity may be ideal, sometimes it may not be a reality. Online groups provide an alternate way to connect to support without having to plan details and coordinate care to be able to attend.

Websites such as MSWorld: http://www.msworld.org/ and PatientsLikeMe: http://www.patientslikeme.com/ provide avenues for individuals diagnosed with MS and their caregivers to discuss their concerns. These groups allow you to connect through online message boards or forums.

So, when you can’t get out of the house but need to talk with another person who has “been there” an online resource may be the way to go. Please note that every online forum will have its own set of rules and privacy policies. Before you register for any website be sure you are comfortable with the terms agreement.

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Come Chat with MSAA!

MSAA now offers an interactive one-on-one chat feature giving you new ways to ask questions and gather infomation. Click here to learn more about how to chat with MSAA .

Hope to chat with you soon!

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