Silent Fears: Caregiver and Child Perspective of MS

I often find that revisiting something already known helps with understanding and coming up with new ideas regarding how to handle one thing or another. We are all creatures of habit, but one fascinating thing is that what we may believe we already know can actually be understood in an entirely different context when revisiting it. 

For the past few months, I have heard multiple people tell me that there is no way I could be sick because I 

"look so good." 

Those words really infuriate me. 

I love that I am able to have an outer image that makes others question the devastation of an illness and provides hope to those who need it. However, the most difficult part of getting others to understand an invisible illness is to convey to them, physically, how such an illness can completely shatter a life. Sadly, this is something I am currently enduring professionally.

I wake every single morning terrified that I will not be able to get out of bed. I go to sleep at night with fears that I will not be able to see or hear in the morning. I'm absolutely horrified that MS could creep in and prevent me from walking down the aisle in December. No matter the fears, however, in the back of my mind, I know that whatever happens will be just another stepping stone in my journey.

My poor fiancé has to cover himself with multiple layers when he is in bed because our house is set at a brisk 68 degrees. He does all of this because he knows the importance of regulating my body temperature. I hate that this happens. It's not fair to him, but he does it because he loves me. 

I still have a hard time understanding how someone could love another who is broken.

To him, I'm not broken. I'm perfect.

Wow.

The most heartwarming fact to me, however, is the overwhelming support I have from those who love and care about me. Even now, I do still struggle with how MS can affect those around me. What I struggle with and endure daily is a direct issue for myself. Caregivers and children, however, must endure the disease indirectly, and that, in and of itself, can be undeniably overwhelming, terrifying, and lonely.

There is an old post of mine, "From the Outside Looking In", that I feel is vitally important in any MS journey.

"Before my MS diagnosis, I was a selfish, cruel, and unpredictable human being. Though my family has always been undeniably important in my life, for a couple of years, I was purely concerned with what I wanted. Period. No one else seemed to matter to me, and to a certain extent, during that time of my life, I was okay with that. 
 

Often, when an individual is diagnosed with MS, talks about how he or she changed, how he or she handled the diagnosis, what he or she was/is scared of, etc. are constantly at the forefront of many conversations. What many fail to realize is, although one person is diagnosed with MS, the diagnosis affects more than just that individual. Although MS does not have me, I have MS which means that those I am in constant contact with also must endure the disease, as well. Often, the feelings of those who are indirectly affected with MS seem to be pushed aside. It is in my experience that these “other individuals” have lives that change, as well. They may not have MS. They may not have to directly endure the daily struggles, fears, pain, anxieties of MS, but indirectly, their lives can change as much as the life of their loved one, spouse, significant other, family member, friend, co-worker, neighbor…

It is incredibly important that the voices of those affected with MS are heard. Those affected with MS are more than just the individual with the disease. I believe it to be extremely important to understand how an outsider looking in – friends, family, significant others – feels about how the disease has affected me, what they are scared of concerning MS, and how they feel about the disease in general. 

[My big brother is the first man I ever loved. He taught me about strength and determination and perseverance. He showed me that it is never okay to give up. More importantly, he showed and proved to me that those who love us will never leave us during times of struggle, uncertainty, and fear. I wholeheartedly believe that he is the main reason why I am still here today. His words radiate through me every single day, 

Desireé, you do not understand what is going on right now, and that's okay. What you are going through - every single aspect of your life - is preparing you for something much greater. It's okay that you do not know what you are being prepared for. That means you have to hold on to faith and hope. There is a reason for everything you endure. If you want to be mad then be mad. If you want to cry then cry. If you want to give up, guess what, I won't let you. I will be here every step of the way to make sure that you keep looking forward and you keep fighting because you are strong. I believe in you.]

My brother is a 33 year old husband and father of two. He is immensely intelligent, captivatingly charming, and highly protective of those he loves. Throughout my struggles, he and I have gotten closer. He is, by far, one of my strongest support systems, but I never truly knew how my MS diagnosis changed him nor did I realize how strong he has been for me during my struggles…

1)      How did you feel when you heard the news of Desiree’s MS diagnosis?

Helpless. I have always been very protective of my sister. I can still remember incidents from our childhood of bullies trying to pick on her resulting in my angered retaliation on her behalf. But with this, I for the first time felt like I couldn’t protect my little sister and it was the worst kind of feeling I could have.

2)      What are you scared of concerning MS?

The pain my sister has to endure. The unknown and even mortality have never truly scared me as much as having to stand by and watch my loved ones be in pain. Every time I hear of another issue that causes Desiree pain, I sit and pray that [somehow] I might be able to take her place so that she might find some relief. I still pray that prayer today.

3)      How has Desiree’ changed since being diagnosed with MS?

She has become tempered steal. Not cold, but strong beyond measure. Just like the tempering of a sword, she has come through the fire a stronger and more brave woman. It’s a change that I am thankful everyday she has gone through. I just wish it could have come under better circumstances.

4)      How has the diagnosis changed you?

I have redirected my personal development to become as strong and courageous as my sister. She has become one of my most important role models and a living example of some of the most important characteristics every good person should strive to possess.

5)      What would you tell others about being a family member/friend/significant other of someone with MS?

Stay strong. The world [may] seem like it is crashing down around you and that you are losing someone you care deeply for, but the fact is that having faith and courage during times like these can be better therapy than anything modern medicine can develop. The therapy of a good support system is immeasurable and invaluable. Also, be informed. It is absolutely true that knowledge is power. You cannot be a truly supportive person without having the knowledge of what is happening. Finally, don’t forget to love. There is no emotion within the human experience stronger and with more healing power [than] love. Become the medication your loved one so desperately needs.

6)      What is your wish for Desiree’ when continuing her life with MS?

That she never loses her strength, courage, and faith. When we give up or give in, that is when life begins to take a turn for the worse. As long as we remember what we are living for and have faith that the trials we are enduring have been put in place to prepare us for something much greater then we will always succeed. 

[There have been so many times when the emotional anguish caused by MS has taken its toll on me. I am a strong woman, but I am far from perfect, and I am okay with that. Randomly, I would start thinking that MS is my struggle and should not be a struggle for anyone else. I've told myself countless times that I would not wish this disease on my worst enemy. Telling my fiancé about MS was one of the hardest conversations I've had. I was falling madly in love with him which made telling him about the struggles I was enduring with MS that much harder. He did not ask to fall in love with a woman who is ill. He did not ask to go through the ups and downs that Multiple Sclerosis brings. However, even after telling him about MS, he chose to stay. Chris is my dream come true. My happily ever after. My knight in shining armor. My soul mate. When I feel like taking a step back to dwell on my MS, his words keep me from giving up, 

You aren't broken. You're perfect. I will be here every day making sure you know that you are loved and making sure that you know that there is a man, standing right here, willing to do everything he can to take away all the hurt and pain you go through. I may not be able to take MS away from you, but I am able to make you the happiest woman alive. I may not be able to make MS disappear, but I am able to prove to you that my love, my support, and my strength can protect you, nurture you, and save you from pain. When you hurt, I hurt. When you cry, I cry. When you smile, my heart smiles, and I am content.]

I met Chris at work. In the beginning, I was merely captivated with his genuine sincerity. I had no intentions of trying to start a relationship due to an ended marriage that contained nothing but abuse, fear, and turmoil. However, in a short amount of time, I quickly learned that Chris was unlike any other man I had ever known. His arms are like a shield for me. I’m protected and unconditionally loved. When I explained to Chris the MS, I could tell that although he was being supportive and understanding, he was scared and confused. He has seen me at my best, celebrates my triumphs, has seen me in a shattered physical state and picks me up when I fall. Before Chris, I never really understood what it meant to be loved unconditionally. I know that with him, my aspirations will become a reality, and I know that our two lives have become one.

1)      How did you feel when you heard the news of Desiree's MS diagnosis?

When Desiree told me that she had MS, I was first scared and even more so worried for her and also us, as we were just starting our life together. Wondering what would this mean for our relationship and our future together. At the time I had next to no knowledge about MS and how it was or could affect Desiree. It was very emotional to hear everything that she has been through, overcome, and was currently dealing with on a daily basis. All I wanted to do is hold her, and make everything better, if I only could.

2)      What are you scared of concerning MS?

I am scared that this horrible disease will take away Desiree from me as I know her, however I try not to think of it in this matter and be thankful for every day, hour, minute, and second that we get to spend together doing things that make us happy.

3)      How has Desiree’ changed since being diagnosed with MS?

He is unaware of how I was before the diagnosis. Although I have explained to him the person I used to be, he continually focuses on the person I am today.

4)      How has the diagnosis changed you?

Since learning that Desiree has MS, I would say that I look at life somewhat differently. I try to be more aware of my surroundings, activities and the risks I take doing so, not only knowing how the outcome would affect myself but the woman I love.

5)      What would you tell others about being a family member/friend/significant other of someone with MS?

That you cannot dwell on what might happen, but to enjoy today and be thankful that you have today.

6)      What is your wish for Desiree when continuing her life with MS?

That she is able to continue to pursue her education, career path, and starting a family. All while she is controlling this horrible disease and not letting it control her" (Cook, 2013).

I am constantly trying to find new ways to help those in my life, my family and friends - ultimately, my caregivers - endure Multiple Sclerosis and its indirect impact it has on them to be a little easier.

I have been able to find an amazing guide to give to friends and family members who may need additional support.

A Guide for Caregivers

Radford (2011) explained, 

It is easy to feel invisible. Everyone's attention goes to the person with MS and no one seems to understand what the caregiver is going through. Many caregivers say no one even asks. Mental helth experts say it's not wise to let feelings of neglect build up. Caregivers need to speak up and tell other people what they need and how they feel (p. 5).

Quite possibly, children seem to have the hardest time understanding Multiple Sclerosis because they cannot see it. I have found some amazing newsletters specifically designed for children and have been blessed to find videos, as well. 

A newsletter for kids about Multiple Sclerosis

This is a quarterly newsletter published by the National Multiple Sclerosis Society. I highly recommend it to parents who have MS to be able to explain the disease to their children in different ways. A letter written by a young girl was sent to the editing staff of the newsletter. Her words are spot on, and I believe other children will be able to understand where she is coming from.

Hi, I am Ariana and I am 11 years old. I have a great dad with MS. I know it is hard to have a dad with MS, but it has a good side too. My dad and I have so much in common - we both love basketball, and we love other sports too. I love him so much no matter what he has. He will always be the nice, caring, and funny dad I know on the inside.

Ariana

P.S. I have some advice for kids whose parents have MS. My dad has had MS for awhile, and I've learned how to adapt to that. I've talked to my dad about MS ever since I was little, and have learned a lot about it by just talking to him. My friends have always comforted me too. All you have to do is find a quiet place for you and someone to talk about MS and how you feel (Ariana, 2007).

Additionally, there are three videos I have found that do a wonderful job explaining to children what MS is, what happens in MS, and what a relapse is. 

Despite the uncertainty that MS can bring, never forget that you are not alone, and we are all in this fight together. 

References:

Ariana. (2007). Ariana's story [Letter to the editor]. Keep S'myelin, 3.

Cook, D. (2013, January 31). From the outside looking in. [Web log comment]. Retrieved from http://movingforwardwithms.blogspot.com/

Radford, T. (2011). A guide for caregivers: Managing major changes. Retrieved from http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-A-Guide-for-Caregivers.pdf

Blown Away

Early yesterday evening, I took my mother on her monthly shopping trip to a local Neighborhood Wal-Mart with my fiance. As always, both of us were running around the store to get her things to prevent her from being trampled by the massive amount of shoppers in the store.

In typical fashion, I traveled to the pharmacy to pick up her medication and grab a few items from the Health and Beauty section. Of course, like always, I decided to peruse around the aisles looking for something that caught my eyes. 

While looking, a gentleman named Jeremy said excuse me since he thought he was in the way. When I looked at him, I smiled, and said, "No, no, no. You're perfectly okay." By this time, his eyes began to squint a little like he had something he was trying to figure out.

Meeting him and speaking to him quite literally illustrated why I write this blog. 

After Jeremy telling me that he swore he knew me and that I looked familiar and that it was driving him insane because he couldn't place me, he asked if I had written any books. I smiled at him, and said no but was in the process of writing one. By this time (no offense, Jeremy), I was slightly concerned. My fiance was in the store helping my mother, but he wouldn't hear me if, for one reason or another, I began calling his name.

I had completed grabbing the items I needed to get for my mom, and told him to have a good day. His response was endearing. "I know I know you. You look so damn familiar that I swear I could lose my mind trying to place you." I smiled again and told him that I was sorry, but I did not recognize him. 

As I was walking away, he held up his phone and yelled, "You're Desireé!! Moveforwardwithms.com!! Oh! My! God!! You're famous!!"

By this time, not only was I completely shocked and overwhelmed, but my heart was exploding because my blog is reaching so many, and these readers are recognizing me and the words I write.

Jeremy told me that as soon as he saw me smile, he knew he had seen me before, and he finally figured it out.

I confirmed that I was the writer of this blog and told him that it was a pleasure to meet him and that I was so happy he read my writing.

With tears in his eyes, he told me that his mother, Celeste, reads my posts, and my writing has given her hope. He told me that I have no idea how I have changed her life; her outlook on having MS; her behavior and attitude.

It was endearing to see him become so ecstatic while he was speaking to me and begged for a picture of me. I kindly declined, but he requested that I write something to his mom as he handed me the back of a checkbook.

I wrote to Celeste, "Celeste, remember that nothing worth having comes easy. Though you may have MS, MS does NOT have you. xoxo Desireé moveforwardwithms.com."

This is the first time I've physically met a reader outside of my family and friends, and to be quite honest, meeting Jeremy, hearing his story of his mom, and hearing how my writing has influenced her allowed me to realize, again, that what I am doing is not in vain.

Jeremy also asked why I haven't written in a while. To my readers, I am sorry. With grad school, work, family, and planning a wedding, things have been quite hectic in my life. I can assure you, however, that my writing is not sparse because I do not want to write. You are all the reasons why I write.

With all that I am, thank you. Thank you for reading my humble blog. Thank you for reading my story and sharing your fears and successes with me.

To Celeste, however, please know that meeting your son was an absolutely incredible moment for me. You raised a great young man, and you should be proud of the man he is. He loves you dearly and would do anything to ensure that you are healthy and happy.

Thank you for reading my blog. I hope that my words offer you comfort during terrifying and confusing circumstances. 

I know you've had MS for quite some time, but never forget that how you react to your circumstances - your behavior - shapes you into the woman you are today. You are an inspiration to so many, and you are an inspiration to me. In less than six months, I will be married to my best friend, and he and I will be trying to have a baby. Knowing you had MS before you had your son gives me hope that I can have my own child one day. 

Celeste, you are not alone. In every step you take, never forget that you have others supporting you and ensuring that you are safe and secure. I am here supporting you and fighting along right beside you. 

If you become fearful or discouraged, keep in mind that no matter what, you will get through anything that comes your way. You are a strong, courageous, and amazing woman. All who know you are blessed with your presence. Though I've never met you, I am forever changed to know about you.

Remember, Celeste, stay strong and hopeful. Though circumstances may try to knock you down, I have no doubt in my mind that you will get right back up and continue fighting - like I do. Thank you for proving that hope and determination can be radiated through words. You, Celeste, are my inspiration.

Surviving

I often find myself struggling to keep up with my blog due to time constraints. It never fails that when I write something, I am given the opportunity to learn more about my readers which makes finding the time to write so important to me. 

In less than 24 hours, I received 17 different e-mails from readers around the world asking me questions, telling me their story, and explaining that seeing a post I have written feels like Christmas. Though I want to answer every single e-mail through this blog, I want to share an e-mail sent to me early this morning from a woman in South Dakota. Through her words, I am able to understand MS more.

Desiree,

I have noticed that you haven't written much in your journal lately. When I was notified of your post, I dropped what I was doing to read your words. You amaze me, but you make me angry.

Your story has captured many, I am sure. Your words have a way of magnifying an illness  people do not know about or understand. Your determination is flawless (to me), and I respect that you continue pushing yourself past what you think your limits are.

Do you feel that your words could cause envy and jealousy? Do you stop and wonder that by sharing your thoughts you are hurting another persons core because they can't do what you do? Do you see yourself as a billboard MS "survivor"? Do you think it is fair to share so many of your stories to those who do not have the strength to do what you do? Do you think it is right to make people think that what you can do, they can do? What type of person do you think you are within the MS community if you seem to not be able to relate to everyone with this MonSter? 

Let me assure you, you do cause envy and jealousy. Your thoughts cause those of us with MS to wonder why we cannot have it as easy as you do. You should not always say that you can do things and be things and continue on with what you are doing because that creates feelings of insignificance to those of us who cannot do what you do. It is not fair that you share what you have done and what you are doing to a world that you really do not seem to know anything about. You cannot relate to every person with this disease, and you should be ashamed of yourself for sharing your stories since most of us cannot do what you are doing. 

Though I respect your writing and am consumed by your thoughts, I feel that you should stop this journal and make your thoughts private. No one wants to read what you are thinking and doing and becoming since they cannot do the same. 

Regards,

Janice

After reading this e-mail about four or five times, I was shattered. Am I sharing too much or being too open about my MS journey? I do not think so at all. After collecting my thoughts and emotions, my response to Janice is one I believe all of my readers should understand:

Good Morning, Janice:

I appreciate the honesty within your e-mail. I cannot explain the joy I feel knowing that my stories and words are read by so many. In response to your inquiries...

1) Do you feel that your words could cause envy and jealousy?

Unfortunately, I know that my words/stories could cause envy and jealousy to individuals within the MS community (patients, caretakers, parents, siblings, etc), but that is not my intention. My hope when starting this blog was to provide information to those seeking knowledge. When I was diagnosed over eight years ago, I was unable to reach out to those with this disease. I want to be able to share my struggles, my pain, my successes so those enduring this disease can see that there is life and hope after the diagnosis. 
 
2) Do you stop and wonder that by sharing your thoughts you are hurting another persons core because they can't do what you do?

By sharing my thoughts, I do not feel that I am "hurting another persons core" because I am trying to illustrate hope, perseverance, and determination when many with this disease see it as a death sentence or an avenue to give up. I am trying to be the voice that so many desperately need to hear. They need know that they are not alone and see that just because this disease exists for them, it does not mean that they are stuck or confined to a life of pain, terror, sadness, and loneliness. 
 
3) Do you see yourself as a billboard MS "survivor"?

Janice, I do not see myself as a billboard MS survivor. I do not disclose my stories/knowledge/hope to make myself seem like the MS patient who has it all or who has been able to overcome the odds. I share everything to provide a voice to an otherwise very dark subject. This disease took control of my life when I was 20. I'll be 29 tomorrow. Though I am still young and though I still have numerous years ahead of me, I still have a long journey to face. Not a day goes by that I do not continually wonder if I will be able to walk or talk or be the woman I've worked so hard to be. I have not survived MS. I am battling the disease like everyone else. I am surviving the disease, and I am trying to give hope to those who feel like their life is over. If I can reach one person, if I can prevent one person from allowing MS to take over their heart, mind, and soul, I think I have accomplished what I originally set out to do. 
 
4) Do you think it is fair to share so many of your stories to those who do not have the strength to do what you do?

I am the only person who can stand in my way. There is not an illness, a circumstance, etc that can prevent me from reaching my goals. This is the one thing I wished I would have been taught when I was first diagnosed because I spent years blaming MS on what I couldn't do, what I wouldn't do, etc. Every single one of us has the strength, determination, and perseverance needed to reach beyond our goals. I am trying to be the small nudge, voice of reason, and support needed by every person enduring this disease. 

5) Do you think it is right to make people think that what you can do, they can do?

I am not making anyone think that what I can do, they can do. I am providing the hope needed to illustrate that anything is possible no matter the circumstances. I cannot make an individual angry, sad, jealous, envious, etc. They are the only person who has control of their emotions. I am merely hoping that I can provide the needed insight to go a step further.

6) What type of person do you think you are within the MS community if you seem to not be able to relate to everyone with this MonSter?

Every single person with MS is different. This disease is different so there are no two patients who are the exact same. Every person with this disease is able to relate to another with MS due to the only commonality - Multiple Sclerosis. I can connect with a complete stranger because he or she shares the one thing: Multiple Sclerosis. Through it all, I have MS. It DOES NOT have me nor does it have any other person. Never forget that.

I appreciate your concern for the MS community. Though I am unable to relate to every symptom and though I am unable to relate to every story, I am able to provide my words to illustrate that hope and courage and perseverance can allow anyone to push forward to come out on the other side stronger, braver, and more determined than before. I will not discontinue my blog nor will I control what I say for fear of instilling jealousy or envy. Through it all, I know that my words, my story, my hope, my determination, my fears, my successes, and my perseverance will radiate to those who read this blog. At the end of the day, that is my only desire.

Thank you, again, for your e-mail. Your thoughts allowed me to dig a little deeper into the, otherwise, mysterious world of MS. 

To those who read my blog, thank you. No matter your circumstances, no matter your story, no  matter the type of MS you have, never ever forget that you have MS. It does not have you. You control what you can and cannot do, and through it all, never forget that you have someone fighting with and for you every single second of the day.

Me.

Mirror

Since 2005, weakness began to ravage my body to the point of being incapable to function as the young woman I once was. There have been countless times over the past eight years that I have made excuses as to why I couldn't do something...or why I didn't want to be active...or why I decided to let the medication and fatigue take over my entire being.


However,


that was then.


This is now.


On May 2nd, I'll be turning 29. This will be the last year that I have to live in the decade that changed my life forever (I was diagnosed with MS on December 17, 2005 - I was 20). Somehow, everything seems to finally make sense to me. What I never really seemed to realize is that my life is not just about me.


It never has been.


This past December, I became engaged to a man who truly encompasses every aspect of what I believe love should be. We support one another. We celebrate each other's successes and pick each other up should we fall. Not a day goes by that I am not continually reminded by an action, a touch, a word, or a smile that I was chosen for everything I am...


and everything I am not.


There were no excuses present when Christopher made his choice to have me (me!!!) as his future wife. When he looks at me, he sees his future. When I look at him, I see my future, and I see everything worth fighting for.


Christopher and I have discussed starting a family soon after our wedding. With these discussions, I've realized that now more than ever, every aspect of who I am, every success, every downfall - everything - will ultimately affect more than just myself.


Now, when I look in the mirror, I see that my overall well-being is no longer just about me. I am fighting for myself, my future husband, our future children, our future grandchildren, and our lives.


I find myself pushing harden than before. No more excuses as to why I cannot do something. I have a goal to run a half marathon in a year. Will this happen? Absolutely!


No more excuses of paralyzing fear. I was terrified to go back to school for my Masters. Am I doing it now? Absolutely! Am I going to graduate? You better believe it! Will I go back for my PhD? Who's stopping me?


No more excuses as to why stopping/giving up is okay for the time being. Have I wanted to give up during grueling workouts or intense study sessions? I cannot describe the want there. Did I? Nope.


No more excuses as to why I cannot be the woman I want to be. No more excuses as to why I cannot be the wife I want to be. No more excuses as to why I cannot be the mother I want to be.


No more excuses.


Period.


Today, I fight for myself. I fight for my future. I fight for my future's future.


Today, I stand here fighting for and with you.


It is a very scary world. There seems to be road blocks around every corner, but through it all, through the adversity, through everything that would typically make an individual give up, it is our purpose to keep going.


Keep your eyes open. Hold your head up high, and follow the path you were meant to take.


Only you stand in your own way.