Hello, 2019! You got here fast! And I hope you brought some good and positivity with you for the year ahead. Right before the New Year rang in my cell phone died for a period of time in the final hours of 2018. Because I tend to be a bit of a pessimist at times, my first thought was, “Oh great, is this a sign of what 2019 has in store? Because if it is I’m sleeping through it!” My husband, who is definitely a glass half-full type of personality, completely changed my way of thinking. Since I’ve been Continue reading
Oh the New Year! Each January 1st millions of people make pacts, decisions and turn over new leaves as a shiny new year looms ahead of them. You may not be the resolutions type. Maybe you think “What’s the point? A majority of New Year’s resolutions go bust anyway.” And you are right. In fact, US News states that roughly 80% of all resolutions made, fail by just the second week of February. 80%, 6 weeks in! That’s nuts. Now there are lots of blogs and how-to lists Continue reading
So I don’t think I’m alone when I say it scares me to try new things. The idea of doing something novel and different is terrifying sometimes and causes all sorts of wonky feelings. I know it’s important to try to experience new things and to step outside of your comfort zone once in a while, but this often elicits feelings of anxiety and stress, so why is that? What is it that stops us from trying new things and reaching beyond what we’re used to doing? It can be a gamut of things, but what is it specifically?
For me I think the main issue is the fear of failure. I’m not too naïve to believe that everything is and has to be done perfectly, but it’s always been an innate expectation for me to do the things that I know well, and to thus shy away from the unknown for fear that it won’t be done right or perfectly. This may be the case for others too; the idea that we won’t succeed at or conquer something, that feelings of inadequacy will abound and really derail us from trying things again. The unknown of new things can be frightening, it’s a normal and reactive response for many to not want to try because we don’t know what’s on the other side. But you also have to think, if no one ever tried anything new, we wouldn’t have all of the wonderful things we have today. Innovations, technology, art, and music were new to its creators and inventors, and without them taking the leaps they had and diving into the unknown, we’d be lost without these treasures.
It’s surely not easy trying new things – nothing ever is that results in success and beauty and grace. But isn’t it worth it, to try that one new thing to quiet expectations and norms? To settle the fears that taint the mind and to make the decision that if you attempt something different and it doesn’t work out, that that’s ok? Fear can be overwhelming and deafening and can interfere with bold choices at times, but it’s our own insecurities that often interfere with achievement. We have to be kind and patient with ourselves long enough to experience the new and see what could have been. So what will you try?
For this month’s MS Conversations blog we wanted to focus on the topic of changes in routine, but with this thought, it was important to highlight employment changes as well, as this is something that comes up often when talking with clients. The timing is appropriate, as Fall always marks a time of change in the year itself, not only in the season’s colors and temperatures but with the familiar sights of back to school and holiday displays (because of course stores are already doing this!).
There are many individuals within the workforce living with MS, and oftentimes its symptoms can impact one’s work routine and abilities in their position. This can be very frustrating and challenging for those affected because with it comes the added stress over job security, self-worth and independence. Because of how our society views work and the roles we fulfill, many people identify themselves by their job and what they do for a living—so if this changes, one’s self-perception can change too. But it’s important to know that there are resources available to help accommodate changing needs in the workplace or help to find another position if an overall change is needed. Separating one’s self-worth and perception from one’s job role is going to be a continuous feat that society as a whole must work on, because individuals are and should be defined by more than just the work they do.
For those who have human resource representatives in their workplace sometimes it’s a good idea to start the discussion with this department if you need something modified in your role; whether it is your schedule, job location/environment or something else, there may be procedures in place for how to ask for these in the workplace. The Job Accommodation Network is a helpful source of information on employment accommodations as well. And for additional help receiving workplace accommodations or finding employment, a Vocational Rehabilitation office is a resource throughout each state that assists those living with disabilities on information and resources regarding employment needs and changes. Working with one’s doctor/healthcare team may be another avenue to assist with employment matters too, especially when discussing symptom issues and their (potential) impact.
Change can be difficult to encounter at times so it’s important to know what resources are in place that could help. Being aware of MS symptoms and how they could impact needs in the workplace can be a good starting point.
Last week people all around the world celebrated and rang in the New Year; 2017 felt like it came so quickly and of course with it came the routine creation of resolutions and goals for the start of the new year. It’s tradition, right? To make New Year’s resolutions and try to stick with them until at least… the end of January? Lol.
I heard something on the radio recently about resolutions – the question as to why people wait until January 1st to make them and essentially put their goals and hopes of change on hold until this significant date. Sure, it does make sense to wait until the start of a fresh year to initiate change; the New Year has always symbolized new beginnings and a clean slate to start anew. But just imagine if you were to start your own tradition of making resolutions and promises of change in the middle, or anytime of the year for that matter – whenever it is that the idea first pops into your head? You’re under no obligation to delay or put your life on hold because of past traditions and habits. If you’re one who likes to wait and mark these resolutions in the New Year then that’s great! But there’s no reason if you want to make a change now, why you’d have to postpone it. I mean there is something to be said for traditions, it’s nice to have customs and practices that are familiar and safe and comforting, but it’s also ok to spark a new practice within your life. Though the world and life in general can have their own very strong influences and effects in your day to day, you still have power to make decisions that impact your own life too, so that means you can make choices that suit your best interest, not just at New Year’s but all year round.
So the holiday season is here and for some of us that means a lot of extra time spent with family. Now for many people this is a welcome and joyous gathering; spending time with loved ones and those you may not see all year round is longed for and appreciated. For others, being with family may be a bit more stressful, so one’s strength and will can find that it’s tested more so this time of year. Now don’t get me wrong, I’m not saying that all family occasions and activities are taxing, they can be very pleasant at times, but there are those moments where we find ourselves maybe wishing we were at Ebenezer Scrooge’s house for Christmas dinner (the Ebbie we see before his change of heart, lol).
I think most of us can relate to those relatives who can bring out the worry, stress and anxiety in us—and for whom we do our best to place a smile on our face and grin and bear their remarks and actions because they come from a place of concern. I know some say that family only wants the best for us, but do they have to work so HARD at it? Tough questions, unrealistic expectations and lingering comments can be very trying to endure, especially for those coping with their own changes or challenges and expectations. No one’s arguing the fact that we do ultimately want to treasure and appreciate the moments we have with family, because we all know that special moments can be fleeting and life can be very unpredictable when it wants to be. But why do some of these moments have to be so hard sometimes? Why can’t we get through a meal or activity without that moment of discomfort because someone asks an unwelcome personal question or comments on something they don’t know anything about?
Again, I’m not saying that all family get-togethers and events bring about these types of feelings; I’m merely trying to validate that these moments do occur for some and they are not without frustration or stress. The question is; how do you approach these more interesting of family encounters, especially around the holidays? What would Ebenezer do? (The changed Ebbie at the end of the tale, that is).
So this week marked the start of many students heading back to school and the unofficial ‘end’ of summer with the fall season being just around the corner. This time of year usually generates many nostalgic feelings; how it felt having to go back to school, which was sometimes a drag at first but eventually turned into excitement to learn new things, the change in routine and schedules, and the countdown to the holiday season. Even just the colors and smells of fall have the potential to bring about joyful feelings—it can be a very pretty and festive time of year.
For some people this week may represent new beginnings and changes, for others it may signify an anticipated change of season with teasingly cooler temperatures being just around the bend (hopefully). For others it may just represent a hope for change and new things to come. This particular week and time of year doesn’t necessarily look or mean the same to each person and it doesn’t have to; everyone goes through different things at different times and holds unique perspectives towards it. It’s more about finding what is special or important to you and holding onto that—knowing what feelings are prompted or what memories are beckoned when you experience time and season changes during the year. It’s a chance to create new memories, make adjustments to change, prioritize your needs, and most of all, to self-care—because there is only one you, and you deserve the most that time has to offer.
One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS. Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?” However, these questions are never limited to someone recently diagnosed with MS.
My MS Journey is a resource for people at all different stages of their life with multiple sclerosis. There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information. All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.
Check out Jessica’s story above for how she felt after being diagnosed with MS.
By Lauren Kovacs
This is a big ticket for those with MS.
We never know what our hand will be. Even frequent shuffling can deal you a bad hand.
Our crystal ball has been smashed. For me thankfully, I had 18 years of a mild MS course. I was able to work, get married, have kids and mostly be like everyone else.
I had been a college athlete and I never thought that being physically active would end. As an adult, I took figure skating, did Irish dancing and clogged. I was always up for something to excel at.
The changes associated with declining mobility are extremely hard. New ways of doing things became an essential skill. Sometimes, there is no way to really deal with the physical betrayal. When it comes to medical equipment, picking fun colors seems to make necessary medical equipment less medical.
Changes can come frequently. Cards are often shuffled and dealt quickly. First, I started needing a cane. No big deal. I bought a blue fish cover for it. A year later, the walker came into the game. I made sure to get one in pink with big wheels and a cool frog bag attached. Then, another hand was dealt. I needed a wheelchair. Not cool. I was not happy.
I again figured a purple one would be fun. Going with devices as non-medical as possible was a good way to deal with that change. I made them extensions of me. A little pinch of personality and a little bling can go a long way. I didn’t fold and stayed in the game.
Last year we took a trip and I needed to bring a walker to use in the cabin. We flew, so I bought a gray one that folded into a garment bag. I used duct tape with butterflies to make it fun.
I really hated the idea of using that walker, but people saw the butterfly duct tape. I was able to enjoy our trip a bit little more. It was still hard to get around, but I felt less disabled.
Making change fun is the only way I can deal with mobility changes. A pink walker, a purple wheelchair or butterfly duct tapes were simple changes that were not medical. Make changes as non-medical as possible, when it comes to mobility equipment. I was dealt a bad hand, but injecting fun is a simple way to make a bad hand livable.
By Matt Cavallo
Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.
I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.
Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.
There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment. Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?
In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.
During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.
I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.
Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.
With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.
The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.
*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