Has Your MS Caused You to Embrace the Hermit-Life?

“I make plans, I cancel plans, all in the name of MS.”

“Friends just don’t understand, I’d rather just stay home.”  

MS can be overwhelming in so many ways that most others can’t understand or relate to.  Many individuals with MS find it can be exhausting and tiring to get out and socialize.  The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.

“I tend to push people away that want to help, forgetting this is new territory for them too.”

“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”

It’s challenging going places and dealing with people who insist on “helping”.  Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own.  It just may take a bit longer than others, which is totally okay!  However, it can get taxing to continually try to explain this to others.

“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”

“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”

Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition.  It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths.  Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration.  Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!

“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”

“Been easier to hang out with my dog since she doesn’t ask questions.”

“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”

At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations.  It really can set you back and take a toll.  Sometimes you may just want a rest from all the exhaustion that these situations bring.  Especially if you feel like just getting through each day is a chore!

It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there.  You know the balance you need, and what your body can and can’t handle.  It’s completely okay to say that a hermit’s life is the life for you when you need to!

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Resolutions…What Resolutions??

Resolutions! We’re winding down the end of month one of 2017…have you stuck to your new years resolutions?? Or have you like most of us slowly fallen off that bandwagon? Every year individuals around the world make promises to themselves or set goals for the new year. Big, small and things in between, we make our lists. I’ve often done this myself and like many come the start of February when someone asks me “Hey how are your New Year’s Resolutions looking?” I look at them and with complete focus reply “Resolutions…what Resolutions?? Oh those silly things”

I’m sure I’m not alone in this idea of looking around at midnight on December 31st and getting caught up in the excitement and coming up with a few dozen things I will definitely do differently in 2017. This year as I watched the clock tick down and 2016 was on it’s way out the time door I decided that instead of vowing to eat better, read more or even save money that instead this year I wouldn’t make a resolution so much as start a conversation…with myself. As the party started to count down, 10…I thought over the past year. 9…The experiences and the problems. 8… I thought about the things that I’d loved about 2016. 7… and those that I didn’t. 6… And then I had a thought. 5… What if in 2017 instead of promising to do things I may or may not actually do. 4… I decided to promise myself something. 3… That this year, in 2017. 2… I would find, explore and do the things that make me happy. 1… My one and only promise/resolution/goal for 2017 was to the take time to really ask myself and listen intently to the answers to what makes me, me. The happy, more positive version of me…0.

So that’s what I’ve been doing this year. Yes I had my “I really should cook instead of running thru the drive thru” moment and gotten up early to do some yoga, or in some cases just have a cup of coffee and watched the sun rise. But not necessarily because I’m trying to be super healthy or save money or anything specific to that. But because cooking and watching a new day start and coffee make me happy. So it may be the end of the first month of 2017 but there is definitely still time to decide not on a resolution per say. But on more of a journey or an exploration…What if you spent some time this year, finding what makes you happy and doing that from time to time not by accident but intentionally. It might be easier to keep than some of the other resolutions we’ve all made.

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Yes…It Counts

I think we can all agree that this Election season has seemed much longer than most. While tomorrow may bring an end to the commercials, debates, and political satire on late night TV (for at least 3 years), it is imperative to remember how important this actually is. Voting has been around officially in the US since 1789 when a then-small number of eligible individuals voted in our first President, George Washington, and his right hand men. Since then we’ve sworn in 43 people to serve in the capacity of President and tomorrow we’ll elect number 44.

While it may feel like it at times, we aren’t helpless in what happens; and while not everyone may be satisfied with the outcome tomorrow, being part of the conversation is up to each and every one of us. Voting is our shot, an opportunity for us all to have a say in who governs our cities, counties, states, and country. While everyone has their own reason for voting for their choice, individuals living with disabilities or chronic illnesses have a vested interest in what comes next and whom our elected officials are. These officials will be responsible for upholding our benefit system, enacting our budgets for public transportation, and charged with making decisions on expanding or ending needed services. They’ll be some of the loudest voices for where research dollars go and be in the room where it happens, as conversations determine the fate of programs and plans that impact our healthcare system.

vote3“Where” or “Who” can you ask questions of, you might ask? On Election Day many disability rights organizations are available by phone to help answer voter questions regarding issues that impact disability services. You can contact your local disability rights advocacy group to learn more about how you may be impacted by the pending election. Also, here are a few tips in regards to getting out to vote:

  • Make Sure You’ve Registered! Many states have specific times when you must register to vote in advance. If you missed the deadline this year, make sure to register in advance for future elections.
  • Confirm your poll location! Call ahead to your city or county government office and ask for information on accessible transportation, opening/closing times, available parking, or any other needed updates on your polling place.
  • Get the phone number! Find the contact number for your State Office of Protection and Advocacy, and bring it with you when you vote. If you run into any barriers such as lack of accessible transportation to the polling site, physical accessibility of the building itself, problem in accessing the voting equipment, or understanding your rights, this is who you can contact. This is also the office that can advise you of your rights in general under the ADA.

I know you might be thinking ‘Does it really matter if I vote?’ YES, Yes It Does. You don’t want to be the person asking ‘What’d I miss?’ or wonder later on what impact your vote could have had. Exercise your right to vote on November 8th. The world and history has its eyes on us, let’s make sure we all do our part to elect our next administration.

Bonus Points if you know how many references to Hamilton are included in this blog. But more seriously, get out and vote tomorrow November 8th…Your Vote Counts!
vote-counts-e1439007094573

 

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Columbus Day

Please note that MSAA will be closed on Monday, October 10, 2016 in observance of Columbus Day.  Our offices will reopen on Tuesday, October 11, 2016 at 8:30 am (Eastern).

If you have any questions, please feel free to call and leave a message on our Helpline at (800) 532-7667, ext. 154 or you can email us any questions at MSquestions@mymsaa.org.

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Feeling Good About Change

Alan Watts QuoteEver think and reflect on your life and think why change is so hard, the fear of the unknown, scared to move forward, afraid of being judged?

You are not alone. Some people know that they need to make changes in their lives. But often, they find themselves taking the path of least resistance and don’t make the changes even if it means remaining unsatisfied. People stay in relationships that aren’t good for them. They keep jobs that bring them no joy. There is nothing wrong with change, especially when it has the potential to bring happiness.

If you do not have the life you desire, you need to make changes to reach your goals.  Change can be difficult and stressful but when you embrace change and recognize all of the good which it can bring to your life; change is no longer frightening. Remember, nothing good was ever achieved without taking a chance and making changes. The key to successful change is to embrace change for all that it is worth and move forward with your goals. Know that there will be setbacks along the way but you have the ability to overcome them.

 

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MS and Loneliness

“If you see me out or even in pictures, there’s usually a great big smile on my face.  To say that I suffer from loneliness doesn’t seem to make sense.  There are so many times though, where I sit and think to myself that I’m alone, that no one really understands me.”

This was just one of the many powerful quotations our contributor, Devin, recently wrote in his article The Loneliness of MS.

Even if well-meaning people say they understand how multiple sclerosis is impacting your life, it’s unlikely they do. And after reading this article, our community shared an outpouring of comments expressing their similar experiences.

Below are some of the thoughts our community shared:

I can’t get out and do things with others.

  • “The part I find most difficult isn’t actually being alone but the lonely feeling you get because you can’t do the things you once did with family and friends.”
  • “Fatigue alienates me more from friends than my obvious disability. Once you say no once or twice, invitations stop coming.”
  • “I feel especially lonely talking about events. I have an event in November. My thoughts are consumed with if I’ll be up to it.”
  • “Lost a lot of friends because of MS related issues, and I cannot go out and see those I do have often because of MS issues”
  • “My friends are into a lot of summer events, but there are so many unknowns…I don’t know how hot and sunny it will be, I don’t know if there will be enough chairs for everyone…will there be easily accessible toilets…I really don’t want to ruin anyone’s day. So better stay home.”

I feel different from everyone—sometimes even those with MS!

  • “People just don’t get it. I don’t feel ‘normal’ and it can get really lonely.
  • “A friend introduced me to a friend of hers who was dx 20 years ago, so she can give me advice when I had just been diagnosed. I realized how we were not at all in the same place. It was nice to know she was out there, but I still felt alone in my experience.”
  • “I suppose that’s why support groups are usually divided in at least 2 separate groups: DX less than 2 years ago, and all the others. I think either group could really overwhelm, and possibly upset, the other group.”
  • “I feel very lonely. Even though I am not physically alone, I am still alone.”
  • “My family tries so hard, but every time they accommodate me, I just feel different, and I feel alone.”

It’s not all loneliness, though: some of you offered solutions for easing those feelings:

  • “I have made the choice to look at my MS disability changes in my life that everyone I know is going to face the same challenges as we all age, I am just ahead of the curve.”
  • “Having a dog does help some. For me any way.”
  • “Online communities make a huge difference. It’s not a perfect solution, but I often feel closer to my online friends than my other friends”

While it does not fix this impactful issue, many in our community took solace in the fact that they were not alone in feeling alone. Sharing your feelings and experiences with others online can be helpful. How about you?

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Easy Home Gardening Tips for a Fruitful Summer

Love the taste of fresh vegetables in the summer? Enjoy the feeling of tending to precious plants? Why not garden?

I have to admit, the idea of digging a big hole in the ground, then having to bend or stoop down to tend to it isn’t very appealing. But gardening can have many therapeutic benefits; in fact the therapeutic benefits of garden environments have been documented since ancient times and can help to improve memory, cognition, depression, and anxiety.

The interaction one has with the healing elements of nature helps to nourish the soul, and in this case the body as well.

Many fruits and vegetables can grow in easy, portable containers; making gardening more accessible for everyone. Local grocery stores, home improvement stores, or farmers markets sell the starter kits that come ready to plant! Pick a container and some potting soil and you’re one step closer to fresh fruits and veggies. While the initial cost to purchase the containers, soil, and plants may be high; consider the reward all summer of essentially “free” food.

plant

There are actually at least 35 fruits and vegetables that you can grow in containers; ones that actually thrive in this environment. Some more common and easy options are tomatoes, zucchini and summer squash, peppers, leafy greens (kale, spinach, lettuce), and citrus fruits.

tomato

 

Best-Fall-Vegetables-to-Grow-on-Your-Apartment-Balcony

 

 

 

 

Consider your outdoor space when planning your garden. Plant containers can be placed on tables, blocks, railings, hanging baskets, virtually anywhere! If you plan to use a large container, consider the overall weight when filled. Plant caddies are great for moving larger pots and can be purchased at the local home improvement or garden store.

Home gardening certainly has its trials and tribulations, but we can all learn from each other. Share your gardening experience in the comments below.

plant caddy

References:

http://www.npr.org/sections/thesalt/2012/02/17/147050691/can-gardening-help-troubled-minds-heal

The 35 Easiest Container and Pot Friendly Fruits, Vegetables and Herbs

 

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Have a Safe and Happy New Year

Happy New Year 2016 (2)

From everyone here at MSAA Headquarters, we wish you a safe and Happy New Year. While we reflect back on 2015 a quote comes to mind:

“Year’s end is neither an end nor a beginning but a going on, with all the wisdom that experience can instill in us.”

-Hal Borland

As we move into the new year, use the challenges of the past as propellers for wisdom and guidance in 2016; with every challenge a new opportunity is born.

PLEASE NOTE:  MSAA’s offices will be closed Thursday, December 31st, through Sunday, January 3rd. 

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Making Comparisons with MS – Community Feedback

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!

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My MS Manager – A Free Mobile App for the MS Community

My MS Manager is the first-of-its-kind mobile phone app designed specifically to help individuals with MS and their care partners better manage the ever-changing course of the disease.

In December 2014, MSAA re-launched the updated app with new features that will enhance usability.The updated My MS Manager app includes options to:

  • Track symptoms and disease activity
  • Input and store important medical information
  • Generate useful charts and reports for easy tracking of treatments, moods, symptoms, and more
  • And – exclusive to My MS Manager – connect directly with your physician via the app to share your progress and reports securely and as needed.

This convenient tool is available as a free download for both Apple and Android mobile devices.

Apple App

Google

 

If you need assistance with the app, please call (800) 772-8277, ext. 178 or email us at apphelp@mymsaa.org.

 

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