Making Comparisons with MS – Community Feedback

Posted on September 25, 2015 by MultipleSclerosis.net

There are so many aspects of living with MS that are frustrating, and sometimes those frustrations occur when interacting with people who do not have MS. One of our amazing contributors, Ashley Ringstaff, shared her feelings about people comparing their experiences with things like fatigue, pain, numbness, and other symptoms with those symptoms in someone who has MS. Many of our community members shared their thoughts and experiences with us after reading Ashley’s article, “You Can’t Compare…”. Here is what they had to say:

“Healthy” People Just Don’t Understand

This is something that I just cannot seem to communicate to certain people who don’t have MS or have never been chronically ill. “Healthy” people just cannot empathize, and I know because I used to be one and now my experience is completely different.
The best is when people who know I have MS contact me and tell me they feel they are having symptoms and think they might have MS too – as if I can diagnose them! I try to see it from their perspective but it’s very difficult. ‪Also when I say I’m fatigued- they say they get that way too all the time! I want to explain to them that they have no idea. But I just smile.
When I try to talk to family members, they say they get dizzy, or they stagger around, etc. I just stop talking and tell them they should get checked out. Even my husband doesn’t totally understand what I go through on a daily basis. I just get so frustrated that I can’t do everything I use to do.
I hate that my best friend who I haven’t been able to see that much in the past year constantly compares my issue with MS to her chronic pain in her hip, telling me she knows exactly how I feel.
When I tell people I can’t be in the heat (for me it’s anything above 70) they say “I don’t like the heat either”. I just look at them dumbfounded. I want to yell “When was the last time you got warm and couldn’t lift your legs to walk or think yourself.
You know, it is natural to feel this way. I am a 15-year stroke survivor and am irritated when someone (who has never experienced a stroke) says they know how I feel. The best common factor I’ve found is any type of trauma.

It’s really not possible to compare

You can’t even compare your symptoms with others experience who do have MS, or for that matter, I can’t even compare the last time I had a given symptom to what I experience this time.
I know there are many people in the world with diseases that are even worse than MS, so who compares what anyway? Just try to feel good for yourself and forget about complaining.
It’s next to impossible to explain what having multiple sclerosis is like to people.

“Healthy” People offer a lot of unsolicited advice

They ask how I am feeling, so I tell them. The response is always “have you tried such and such” or “that happens to me, too.” Now I only share my symptoms and feelings with medical professionals and a couple of friends who truly do understand. Family? Forget it.
I love when people say “you would feel better if you lose weight or eat healthier” or the classic “exercise would make you feel great”. My family and friends mean well but don’t always say the right things.

“Healthy” People are just trying to relate to us – it’s harmless

I like to be more optimistic – I believe, most of the time, they are trying to relate. Unless they are significant in my life, I don’t try to differentiate.
I feel the majority are trying to empathize. Most just don’t know how to react when you tell them you have MS because they don’t understand what it means.

What about you? Do you find that “healthy” people try to compare their symptoms with yours? Share with us in the comments!

The first “Ask Me Anything” on MultipleSclerosis.net!

Posted on April 24, 2015 by MultipleSclerosis.net

You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!

Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.

Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!

I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.

What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.

What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.

How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.

What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.

What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.

Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist– preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.

We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!

MS Means Managing Your Energy

Posted on September 29, 2014 by MSAA

By: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*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.

Summer Reflection

Posted on September 12, 2014 by MSAA

By: Matt Cavallo

For me, having MS sometimes means more sleep. This is especially the case for me with two young boys, who don’t tend to sleep in and have endless amounts of energy. I find that when the seasons turn to fall and the long sunny days turn to long dark nights, I find myself chronically tired and needing to hibernate. When I feel like I need more sleep, I draw on lessons learned from the summer.

This June, my wife and I decided to drive to take the kids to Legoland in San Diego. San Diego is about a five hour drive from my house, so we loaded up the minivan and hit the road for a three day vacation. Prior to that vacation, I put it in my mind that it was going to be hot and that I was going to be waiting in long lines for the rides, but that I needed to give my kids a vacation to remember.

The first day took a lot out of me. The drive was exhausting. Even though the kids behaved and there was only a little traffic, driving that long can be taxing. However, once we got to the hotel, the kids wanted to play. Even though I was exhausted, we met up with friends and went to the beach. I spent the entire time at the beach playing in the water with the kids. After about twelve hours of going non-stop, we went to the hotel and I crashed.

The next morning came too early, but the kids were up and ready to go. I felt like if I could just get a little more sleep, I would have energy for Lego Land. More sleep was not to be had but we spent an awesome twelve hours running around the amusement park, going on the rides and playing the games. The sun was brutal and beat me down as I waited for ride after ride. By the time we got to bed, I was so exhausted that I didn’t think I could possibly pull it together another day.

The next day came and I needed just a little more sleep, but that was not going to happen. It was day two at Lego Land and the kids were ready. It was a repeat of the first day and the kids were having the time of their lives. We spent another twelve hours roaming the park being roasted in the early summer sun. By the time we got back to the hotel, I thought I was going to pass out from exhaustion, but the kids wanted to swim at the pool. So even though I had expended all my energy at the park, I needed to dig down and find the inspiration for one more hour of activities.

While I was sitting at the pool watching the boys swim, I thought that this is what life was all about. It turned out that I didn’t need more sleep. Sure I was tired and the sun and MS fatigue were wearing on me, but I needed to be there. At this moment, having MS meant time with my sons. So many times, I had let my MS fatigue get the best of me, but I fought through it to create memories that will last a lifetime.

As I look forward to the fall season and the long nights, I think back to that summer vacation. I look back at how I was fatigued and didn’t think I would make it, but created precious memories. For me it is all about getting going, because for me getting started is the hardest part. This fall, I am not going to require more sleep. I am going to spend more time with my sons, because that is what motivates me to keep going. What lessons from summer are you going to use to keep going this fall?

*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/

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