Monthly Archives: August 2018

Vacationing

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This past week, one of my MS sisters went on vacation with her family. This particular vacation, to anyone who doesn’t understand what it’s like living with Multiple Sclerosis, might have seemed like a no-brainer because it was “just” a trip to the Jersey Shore. I mean for most people hopping in the car and spending a week down the shore is pure bliss. But not everyone feels that way.

Leading up to the trip, my MS sister was on the fence about going. I sat with her as she cried and told me one of the biggest things that was holding her back: watching her family do things she used to be able to do and now can not, makes her sad because she wishes she could still do those things. Some things just aren’t the same, even on a scooter. A simple walk on the beach is a scary proposition for someone with MS. She, normally one of the most energetic and optimistic people I know, did not want to be reminded of her limitations. She accepts her life as it is, and never complains about where her MS has taken her, but watching her family head off to do things she used to love doing as well was not something she wanted to deal with because she did not want to spend her vacation being sad and longing for the past, while everyone else would seemingly be oblivious to how hard it is to be the odd girl out.

This may seem easy to some, but for a person with MS, walking on a sandy beach is asking for disaster!

She also debated whether or not to bring her own car, even though other family members wanted to drive with her to reduce the number of vehicles there. She didn’t want to come across selfish, but she wanted to have her own car there with her just in case it became too much for her to handle and she wanted to come home. This caused more discussion and also made it pretty apparent that despite her many years living with MS, even the closest of family members could not understand her situation. She wavered and cried over it until the very moment that she decided to go.

These circumstances coupled with the simple task (for most people) of packing makes everything prior to any vacation a daunting task for an MS patient. It’s constant pressure for us. We have to take into account so many more things than the average person. It’s no joke when we say that we need a vacation after every vacation, and lots of recovery time because putting on a smile for the benefit of everyone else when it’s the last thing we want to do takes every bit of strength we have. And because we do, everyone thinks things are perfect when they aren’t.

One of the hardest parts of a vacation like this is that everyone wants to help you. That’s great, but there is nothing really they can do to help. All it really does is make us feel like we stick out even more, and that can be humiliating even if it is just family. We appreciate help but we do not want everyone standing around watching while others help us do things we wish we could do ourselves.

In the end, when my MS sister was home and I asked her if she had a good time, she didn’t exactly know how to answer. The place they stayed had a gravel walkway which basically rendered her scooter useless unless there was someone there to help her first move beyond the gravel to where she could scoot on her merry way. She did feel that her independence was compromised, which never happens at home, so there were moments that she questioned whether she made the right choice in going.

When we spoke I reminded her that she was surrounded by her whole family, which is a rare occurrence, that those memories are priceless and that they don’t happen very often. So even if it wasn’t always her perfect vacation, she agreed that being around her whole family was something she can carry forward with her for the rest of her life.

What those who don’t suffer from chronic illnesses fail to realize is that although these things are so much more difficult for us, we do them not just for ourselves but also to make those around us happy. Just because everything is so much harder for us, we still do our best to enjoy those moments, knowing that we will pay for them in the long run.

So if your family includes someone like me or my MS sister, the best thing you can do is show a little understanding and know that when things are hard for us, we aren’t choosing to not participate, we are simply doing what we have to do in order to enjoy the moments that we can. We already feel guilty and then when everyone puts pressure on us, the guilt gets magnified and can actually manifest as physical symptoms. Snide comments or complaints do not help us feel better because we already push our limits just living as close to a normal life as possible.

So if you were never taught empathy or compassion, or just because you can’t visibly see the symptoms that we have, take the time to learn a little about what we deal with… and if you don’t have anything nice to say, it’s best to say nothing.

Most of us who have been diagnosed for a long time have come to terms with our limitations, and we don’t exactly embrace them but we are fully aware of them. We try and live our lives happily despite it all, and it would be so much better if those closest to us chose to help us rather than demean us. I mean isn’t that what everyone wants?

Beauty that I observe from afar these days…

The Simple Life

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This past weekend, my family was up from Florida, which usually means a trip into NYC at some point for me and Bruce, and this time was no different.

As we were driving in, my mind wandered back to the past. It used to be nothing, even without Bru. I’d simply hop on a train from New Brunswick to Penn Station and head to meet my sister, or else she would come to meet me. We would shop and drink wine all day and it was no big deal. We did it a lot, and I loved it.

But nowadays, thanks to progressing MS, I have panic attacks just thinking about the process. Because my feet are neuropathic (meaning I can’t feel them), I compensate with a wide-based gait. Being in a crowd forces me to narrow my gait, thus throwing me off balance. I get very anxious thinking about maneuvering through crowds without falling. The hardest part about this is explaining the situation to people who don’t understand.

This right here is my worst nightmare!

Plus, now I get so much more fatigued that just showering, getting dressed, prettying myself up with makeup, and tending to this huge head of curls is a huge undertaking of its own. After all that, I am just plain exhausted. I have been questioned about this more times than I can count, but chronic illness sufferers who identify with the spoon theory  are the only ones who can truly understand this. Others will look at me and tell me how great I look, but they don’t see the storm below the surface of the facade that I put on for them to see, because if they could they would be shocked at what they saw. It’s definitely not a pretty site to behold.

When we know in advance that we have plans, I adjust my schedule to rest as much as possible beforehand, and I try to give myself a full day of rest afterwards. Sometimes it works, and sometimes it doesn’t. MS is unpredictable and I can never guess how I will feel tomorrow. My body only knows right now.

Because my job these days is working on me full time, I tend to rest on weekends so that I am ready to take on my schedule for the coming week. Luckily my husband is a homebody, and that even after 24 years we still love hanging out together, and we don’t have to be out and about. We like to lay low on the weekends, watch movies, and just be together. Back when I would run in and out of the city, we spent far too much time apart, and the more time goes on the more we just want to spend time together.

Photo credit to Idalia Photography for catching this moment on our 10th anniversary photo shoot.He still makes me smile like this.

Would I like to have those fun times back when I was able to do more? Of course! But I accept my realty and I understand my limitations. This is a hard lesson to learn and one that MS forced upon me. But on the plus side, Bruce and I have never been more on the same page, and I am so incredibly lucky to have this guy who supports my every decision and who loves me unconditionally (even when I can’t keep up), walking proudly by my side.

Our life isn’t overly exciting but as long as we are together, we don’t care. We love the life we have built together. Some might call it boring, but we know it’s a necessity because we think about the long term, and this simple life is what is going to be most beneficial for us in the future.

It isn’t what we planned, but we accept it and embrace it because we have grown closer and closer as a result, and I wouldn’t change that for the world.

To Bruce, thank you for being my partner on this often rocky journey, and for being my person. I’d like to leave you with a quote from the song “All My Life” by ELO:

I’m so glad I found you
I just wanna be around you
All my life

(#truestory)

4 Years

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It hit me the other day that just over four years ago, I began this little blog of mine. I wasn’t sure exactly where it would go, or even how long it would last. But a friend of mine encouraged me to go for it (Shout out, Alex! 😘) because she was sure there was room for someone like me in the blogosphere.

At first I thought it would be a way for MS patients, or patients with other chronic diseases to connect with someone going through the same stuff, but handling it with my usual optimistic attitude. I had lists of topics that I thought would make great blog material, and then I quickly learned that it’s so much more relatable when I write about what is current and topical in my world. In fact, I was surprised at how easily I shared some pretty personal stuff, but I did it for the benefit of those who read my blog. Chronic illnesses can feel very isolating, and even though I’m just hanging out here in cyberspace, people all over have connected with me and my blog.

I don’t blog for money, and you’ll never see me monetizing this blog because to me, that mars the whole intention behind why I do what I do. I share personal stories and anecdotes, and things that I deal with on a daily basis because I want others to know that they are not alone. I want them to know that life is what you make of it. Just like with everything else out there, you can’t control what happens around you, but you can control how you react and respond to things. These are hard-learned lessons, but once you begin to change YOUR perspective, your whole world changes. I’m not sugar-coating anything, and I think my honesty has taken this blog a lot farther than if I just talked about random topics from a list I created years ago.

Whether you have a chronic illness or not, it is important to make the most out of the hand you’ve been dealt, which is the motivation behind what I write every week. You can’t change your cards, but you most certainly can play them like you would have chosen that hand if you had the choice. The fact is, everyone.. EVERYONE has their own hand of cards and maybe they have a better hand than you do, but it’s all relative. I never compare myself to anyone but me, because my life is what I know, and I can’t pretend to know what others are dealing with. This mentality doesn’t just relate to health, and it can be applied to life in general: money, jobs, houses, etc. We can’t be truly content with our own lives if we compare ourselves to those around us. Complaining doesn’t help, but smiling and feeling genuinely happy for others and their successes does. And if it doesn’t happen right away, just fake it until you make it because I swear it works!

My loyal readers know the obstacles that I have faced and will continue to face for the rest of my life, thanks to MS, but I do it with a smile and gratitude because this is the only life I have been given and I’m not about to waste it being Debbie Downer. It’s just not in my character. I promise that I will continue to bring you topical, relatable content as long as you continue to read what I put out there. If you ever have any questions or things you’d like me to blog about, please feel free to message me and I will oblige. Also, if you are having a hard time keeping your glass half-full, just reach out to me and (even though I’m not a licensed professional) I’ll fill your glass up with the best darn lemonade you have ever tasted.

 

Back to School

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A few weeks ago, I wrote an intentionally cryptic blog entry because I wasn’t fully prepared to share what my next venture will be, and there were still a lot of details to be ironed out. This week, I am coming clean, and sharing what my intention is and the reasoning behind my decision. I’d like to state that pledging to do anything that requires long term commitment when you have MS is ambitious because MS has a mind of its own and can rear its ugly head at any moment, causing complete and utter chaos with a single relapse. But I’m not letting that stop me because I know that this undertaking is going to improve my life in so many ways, both tangible and intangible.

Some may have guessed already when I wasn’t ready to share, but starting in just a few weeks (September 8th to be exact) through June of 2019, I will be dedicating my life and myself to 300 hours of yoga teacher training (YTT). I haven’t been more excited about anything in such a long time, even though I realize how intense it is going to be. There will be full weekends where I’m at the studio, partial weekends, readings that are required, studying Sanskrit names and chants, field trips, guest teachers, and the list goes on.

The readings necessary for my course, plus my mini binder to organize my notes. Just go ahead and stamp “dork” on my forehead now!

When I first began thinking about doing the yoga teacher training, the only thing I could think to myself was that yoga teachers don’t look like me.  I’m not long and lean, and although I have changed my body in huge ways in the last 4 years, no one would look at me and know how hard I work to be me… still a little overweight and always morbidly obese on BMI charts because of the amount of muscle mass I carry (just one of the many reasons I do not go on a scale and when my oncology team forces me, I go on backwards and we never speak about “the number”). So one day I approached my teacher after class, and asked if she ever had someone who looked like me in her yoga teacher training classes. She did not understand the question at first because she knows my medical issues and she (a true yogi) sees me as a student who is dedicated to practice and tries her hardest on the mat every single day. And she began to list all the reasons I SHOULD take on the challenge, the most memorable to me being that I can show people that ANYONE can do yoga and with the obstacles that I deal with I can inspire many others to just get on a mat.

Just get on a mat! It’s a practice!

So I took this information to heart. But my real motivation is to gain a greater understanding and appreciation for my mind, my body, and the space I occupy on this planet. Yoga is meditative for me, and when I’m on my mat, nothing else matters. I love that yoga has been a practice for thousands of years, passed down from teacher to student, and I love that every single pose serves a purpose for the body. I love that they call it a practice, because teachers are still learning and growing, and that’s how we should all be, off the mat too. And although I’m not a big “ohm” or chanting person, the magic of hearing it to book-end a practice can not be understated. Add a harmonium and this girl, who is not a big chanter, can’t help but join in.

This beautiful gypsy soul (and her harmonium) will be my teacher.

My true intention for committing to YTT is to better myself… physically, emotionally, and spiritually. I know that it will help me further my practice on the mat, but the other pieces are as vitally important to my growth as a human being as the physical part. It’s sometimes hard for me to believe how much I hated yoga when I first tried it because I had a crappy instructor who insisted I sit in a chair during class simply because I have MS. Clearly I do not need that accommodation and she rubbed me the wrong way, which usually never happens with yoga teachers because they tend to all be such incredibly beautiful souls. They emit a positivity and a spirituality that is endlessly comforting for me. Once I found the right instructor I became intrigued with all things yoga and soothed by a simple practice. And although I have come a very long way, I will always have challenges because of MS, breast cancer and the resulting surgery that inhibits full range of motion on my left arm, and a fused spine which does not allow for certain twisting poses. But I work through it, and I’m excited to see how far I can go despite it all.

Just one of my issues, but it’s not going to stop me.

I never intend to make money from this journey. I just want to be in this soothing world, and contribute to it by way of community classes or fundraisers. Whether I am a teacher or not, I will always take classes and continue my at home practice because both are such big parts of my life. As with any commitment like this, I am anxious but excited. I have my moments of self-doubt, but I also have my daily affirmations to help offset those negative feelings. The point is, how will I ever know what I am capable of if I don’t at least put myself out there and try? Failure is not in my vocabulary, so even if I have to work 20 gazillion times harder than your average yogi, then I will. It’s how I have lived my whole life. I don’t let others dictate what I can or can not do. Luckily, I have the best husband ever, who is endlessly supportive and totally gets me and my choices, and he believes that I can absolutely do whatever it is I set my mind to. I’m lucky that he is there to remind me of my strength when I am feeling weak and vulnerable.

I always feel better on my mat.

So here I go, starting out on a new adventure, and I’m sure I will be sharing plenty of it with you, my readers, if you choose to follow along with me. I know this will fill the emptiness that I have been feeling, and ever since I committed I can already recognize how my attitude has changed. What I know for sure is that whenever I have felt low and stagnant, stepping out of my comfort zone has always brought me back to a good place.

I’m just here trying to be the best version of myself possible. I will never be perfect, and I have luckily been able to leave most of my perfectionist qualities in the past, at least where it concerns not being so hard on myself. As I started to do some of my reading for YTT, I sat down with “The Motivation Manifesto” by Brendon Burchard, and although I am not that deep into the book I can tell that it will be one of those life-changing books for me. The following quote sums up everything:

“It is not merely freedom from bad things that limit us, but freedom to experience good things that awaken us.”

I couldn’t agree more. And if you’re trying to find me, especially during the next year, most likely I’ll be on my mat. Namaste 🙏🏻.