We’re In This Together

This month we’ve been focusing some of our entries on care partners. We often think of the individual who is diagnosed with MS or cancer or mental health but what is not as often associated are the family, friends and care partners who journey along with them. While each person’s story is of course very different and I don’t want to generalize the experience of everyone I thought it would be great to get more of a perspective from a care partner of someone living with a chronic illness. We’ll call him Tony and in addition to being a masterful golf player, jazz enthusiast and retired teacher he is also the caregiver for his wife who we’ll name Maria (west side story anyone) who has been living with a chronic illness, Parkinson’s Disease for the last decade. Tony was gracious in giving me some of his time for this.

Me: What is one thing you want others to know about being a care partner?

Tony: Oh, we’re just jumping right in! Umm, I think It’s important for people to know that it’s hard. And not just in the sense that people think of. I love my wife and I take care of her because I love her, I want her to taken care of, I’m physically able to and as old [fashioned] as it may sound I promised to be there for her in sickness and health. I know she would take care of me this way if our roles were reversed. Umm, but also being a care partner it’s hard. I know lots of couples who are no longer together and we shouldn’t shame them for that. It takes a lot to take care of someone in this way. It’s hard, you know… it’s hard.

Me: Yea, I think what you said about shame is big. We sometimes look at a spouse or a family member and ask why didn’t you stay and be there

Tony: Right, Yea. I’m in support groups with people in that boat. And I think people don’t realize how difficult it can be. The hardship it can be, mental[ly] and physically too. And it’s not usually for a lack of love that people don’t stay. Which is I guess what most people would think when they see that but it’s, it’s hard.

Me: Yeah. You mentioned support groups. Do you run one or what has that looked like for you?

Tony: I’ve been part of a couple of them. I’ve never run one…maybe I should have! But I felt lonely before getting connected to my [first] support group. When I walked in it was like having mirrors or copies of myself around. Here were these other people who understood me. Who listened not with pity but with understanding. I found a place where I could be less alone. Where I could be upset or angry and not feel bad about it. Not every support group was for me but being in those places I’ve found that I’m not alone and there are other people who are there in the same boat

Me: What was Maria getting diagnosed like for you?

Tony: It was kind of crazy. She has other members of her family who have diagnosed with it and I just didn’t think it would be her, it would be us. But it made me aware and think of a lot of things I never had before. Like what it was going to be like to take care of her and then who would take care of her if something happened to me.

Me: You always seem upbeat though.

Tony: There are days when it’s rough. But for the most part I think about the fact that I love her and she loves me and we’re in this together. She has lots she could complain about, but doesn’t… so why should I. We take it one day at a time, that’s all we can do

Being a care partner isn’t an easy thing to do and I’m sure Tony and Maria like all care partners have waves that ebb and flow. Seeking out a support group is a great way to find a group of people that can be in your corner.

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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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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.

 

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