I Get Tired of "Fake Fluff" Sometimes

By monid

2 min read

I was diagnosed with MS on October 22, 2012. That day will forever be ingrained in my memory. Over the past five years since my initial diagnosis, I have realized how little the majority of the population knows about this very personal and intimate disease. Being an "invisible disease," it can wreak havoc on every physiologic and cognitive process within my being without anyone outside of me having a clue. If I chose to be brave and express to someone that I have MS or that I am not feeling well, I am faced with the possibility of hearing: "you just have to stay positive,' or "well, you look great," or "my friend has MS and she just ran her first half marathon."

(Big Exhale...lol)

I know that they have the best intentions and are trying to be helpful. And, please know that I think it is great that their friend with MS ran a marathon!!! However, today, I am tired. I am tired of this disease just lingering in the background and surfacing its head at anytime. I am tired of people in my life being disappointed in me when I have to cancel plans, or if I don't return a text for a few days, or if I am not floating on a cloud at all times. Believe me, I am a fun loving person by nature and usually the life of the party but some days I get tired. I am tired of wearing a mask of happiness "fake fluff" during those times that I don't feel so well. Do I do it to fit in without others knowing my secret? Do I do it to make others more comfortable? Do I do it to avoid rejection? I'm sure that all have applied on one or more occasions. LOL

WE are allowed to feel tired sometimes. With all of the things that we have to manage along with this disease (medications, doctors, labs, medications, work, fear, family, depression, anxiety, vertigo, disabilities, finances, mortgage, etc), we are entitled to have a day free of "fake fluff." Take a day for yourself. :-)

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freedom Member
So true. It is not in everyday conversation such as cancer or diabetes etc. Frustrating to try and explain it.
1. monid Member
 Hi Freedom 😀 Yes, it is frustrating to try to explain our disease because we all experience MS differently. I wish that there were more commercials about our disease to inform the general public. Maybe then, we would have a little more understanding surrounding our needs as a community.
2. lexie Member
 I love this post. I would love to post this to all that know me. Sometimes we are so misunderstood.
Erin Rush Community Admin
I think you described living with MS quite eloquently, MoniD! And I know many of our members can relate to what you shared. Having a sometimes "invisible illness" can be so tough and being compared to anyone else really doesn't help, either! In light of your words, I thought you could relate to this piece about that unsolicited advice everyone within this community seems to get - <a href='https://multiplesclerosis.net/living-with-ms/unsolicited-advice-get' target='_blank'>https://multiplesclerosis.net/living-with-ms/unsolicited-advice-get/</a>. Thank you so much for sharing your perspective with the community. You have a wonderful way with words! And I hope you have some "fluff free" days this coming week! Best, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
1. monid Member
 Hi Erin 😀 Thank you for your kind words. And, yes, I was able to have some "fluff free" days with my immediate family over the holidays. LOL Have a great day.
2. jdeabler Member
 Hi MoniD- I totally agree with Erin! Love your way with words and and the way you express what you've experienced. Living with MS for 28 years myself, I agree those "fluff free" days are important to regroup and rest. That being said and please do not think I am a crazy person lol, I have said for years that in a number of ways MS has been a blessing in my life. People I've met, jobs I've had working within the MS community, places I've gone, choices I've made to live the fullest life including learning to really appreciate the right people who understand you, living in the moment and not putting things off til later are all because I understood the uncertainty of MS. Sure I've had those "I don't feel like doing this or listening to this right now" moments but they pass and life goes on.
flora68 Member
When I was first diagnosed in 2003, my neurologist gave me two big, glossy BOXES of information from the pharmaceutical companies that manufacture Avonex and Copaxone, and each included unbelievably vapid fluff-piece videotapes about how perfectly HAPPY life can be if only you're taking THEIR obscenely expensive products for MS. The Copaxone video actually had the nerve to claim that it makes you feel BETTER to be forced to take a shot every effing DAY (instead of just once or twice a week as with others), because that way "I'm doing something about my MS every day!" Lucky me! EVERYONE in those videos was vibrantly healthy and physically beautiful, and they all obviously had ample money and leisure time to hang around their own backyard swimming pools, all with ZERO "issues" of ANY kind at all. I very nearly vomited, and I hadn't even TAKEN anything yet..... As it turned out, Avonex made me RAGINGLY and helplessly suicidal exactly once a week, and the extreme and persistent local reactions I had to Copaxone made me look like the Elephant (Wo)man. So many shameless LIES! Fortunately I was able to get on LDN and have been stable ever since, almost 13 years and counting. Fortunately none of my friends or family members were ever clueless enough to say anything that stupid.
1. jlnewport Member
 Oh, Flora, I know exactly what you mean. I was diagnosed in 2001. I could NOT believe it when my neurologist gave me 3 boxes with information about how wonderful their drug was and why I should be taking it. (Avonex, Betaseron, and Copaxone). I was appalled that after a life-changing diagnosis that I knew nothing about I was expected to choose a drug that I also knew nothing about. I've also talked to other MS'ers that went thru this. I was still reeling from the attack that left my body only halfway working. Doctors really need to find a different way to educate newly diagnosed people. Maybe a nurse sitting down and talking with you? I don't have the answers, I only know that this is unacceptable in my books. Hoping and wishing you good health.
2. jacksonlowerkeys Member
 Very well said. Thank you. You added value to this blog!!!!!!!!!
f5hwo4 Member
As soon as I get to a party I am ready to go. I can't remember any names, stand around talking or tell anyone how I really feel. I listen to other wives talk about crock pot meals and dump cakes, conversations that I am unable to connect with. But I stay because my husband who is the life of the party is having a good time. He needs all the breaks he can get from our MS life. Potter
1. monid Member
 Hi Potter 😀 I have felt something similar at times where I feel like I am functioning in a daze. People around me are having fun. I am consciously aware of what I am saying and how I am acting so I do not draw attention to my personal fog. (which can be exhausting) Crossing my fingers for an academy award one day soon. LOL
2. denisec Member
 Very emotional intelligent potter. I sometimes say that I am too tired to go out as it means that hubby doesnt have to lug me around on the transit wheelchair. He needs all the breaks he can get from our MS life.
denisec Member
Ah the cognitive processes. I agree it can be a challenge but having had MS over 10 years I have found that it comes in ebbs and flows. Losing the ability to multitask can throw a spanner in the works. I was trying to make hamburgers the other night with my partner vacuuming the next room...it was so difficult to stay focused. I burnt the buns I had toasting!
1. Meagan Heidelberg Moderator
 Thank you for sharing, DeniseC! So sorry to hear that you burnt the hamburger buns! We appreciate you being a part of our community! Best - Meagan, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
lexie Member
I love your post Monid. I would love to post this to all
monid Member
Hi Lexie. Yes, some days I wish that I could wear it on a T-shirt. 😀 However, I think that people in our lives have the best intentions in supporting us the best way they know how. Sometimes, however, [coupled with our existing varying levels of frustration and tolerance 😀], it can appear that they are insensitive and uncaring to our every day struggles. During those times, I am learning to take a breath (or a few) before I allow my emotional train to leave the station. Know that THEY are doing their very best. I am grateful that there is a forum of like minds on <a href='https://MS.net' target='_blank' rel='noopener noreferrer ugc'>MS.net</a> so that we can be heard and understood from members of our exclusive "tribe." 😀
mascha Member
Great article 😀 yes i often feel this way. The invisible is one of the hardest. Although if this disease was understood more,maybe there would be more understanding. I'm constantly dissapointing people because I cannot plan or show up on that day. My most important is my own family. The rest are second. Thanks for the great read 😀
tgjipu Member
Hi Everyone It’s Difficult enough to accept the diagnosis of MS, let alone have immediate knowledge of the disease. For example “Hey you have MS” would you like paper or plastic bags. Because your going to need something to help you carry the baggage that comes with this disease. After my Dx I actually had a Moment of Relief, only because now I don’t feel like I’m just a Baby complaining about my aches and pains. My Sister Tearing it up on her Hyperactive Walks and shaming me for not being able to keep up with her. My constant desire to want a nap after a 9 hour work day, and being labeled as an old lady because it appeared that I didn’t want to do anything but sit around watching TV and being Rude enough to fall asleep in the middle of a conversation. I make it a point to visit this and other MS Sites Daily to catch up on new Non Drug therapy helpers i.e. PT -Stretching -Vitamins -Water Aerobatics - And so on. Some of us don’t do well on a manage of Prescription Drugs. Or we Welcome anything that may be less invasive on our already overwhelmed bodies. It’s horrible to go through each day with the feeling that your not pulling your weight, or “You’ve just Given Up” when you know that your already pushing the Envelope if you will, and your fighting through Pain-Fatigue-Memory Issues-Blurring Vision- Depression- Loneliness-and so many other emotions that we were lucky to inherit with MS. We all in our own way fight the “Invisible Disease “ and do our best to NOT make it our opening statement at an introduction or topic at dinner. And it still feels as though we’re not doing enough. Well let me just remind you of “HOW AMAZING YOU ARE” Because every single day that you fight all that this Disease has to offer, you Are A “Warrior” and You Deserve to have a lazy day or a Fluff Day, I worked every day up until 2012, when my body just decided for me that it had just had enough, and that was that. Well first prepare yourself for the Depression and feeling that your completely out of the Loop on pretty much Everything, at First you’ll get the how are you phone calls or the Surprised “Oh I Heard you were Sick” are you going to be ok. Do you need anything. Please call me if you need help or just want to talk. And everyone in your WORLD IS NOW A DR. Or an Expert on MS, Because they know a friend who’s Friends Sister has MS and she still works and she Runs everyday and has children at home and she’s Wonderful. ( Insert Sarcasm Here) and Than there’s YOU. Who apparently haven’t quite figured out how to measure up to the Superheroes Fighting the same Disease. Because maybe you mentioned to them during that last conversation that you were in pain or very tired or maybe even a little “Depressed” and Now they Think ( All Of your Non Degree Self Nominated Dr. Imposters) That on top of Everything else you may need an Evaluation by non other than the Head Dr. Greaaaaaaat. Rest Assured your Not Crazy your Not Lazy and Your Not an Underachiever. Your One in a large number of Individuals who are Learning to Live with the Disease you have been Blessed with. I went through the WHY ME Phase for a Period Of time, and As we get stronger and get a grip on the Idea Of “THIS IS MY LIFE NOW” we Than have the Ability to move on and start to adjust our Lives to its New Normal. And only you can decide what that needs to be. Start out slow by giving yourself a Break, and not feeling as though you only have this Disease because of KARMA That somewhere in your life you made a Terrible Mistake and now you must Pay the Price for it. It Doesn’t Work that way. Medically Speaking each of us maintain Dormant cells in our Bodies and sometimes something can Trigger it and wake them up, and Guess What “HERE’S JOHNNY” and than there’s the Depression and Guess What, maybe just maybe you will be strong enough to combat that little roadblock on your own, and maybe you need a little help with it. Either way IF You Address it-You will fix it. When you ask yourself “WHY ME” I now say WHY NOT ME? After having plenty of time going through so many Emotions and Pity Party’s That I Threw for Myself, over the last 15 Years, On Easter Sunday we had Our Children Our Grandchildren Our Children’s InLaws, and a Neighbor at our home for Dinner. I planned and Prepared the meal as I always have. And as we were having Dinner I was compelled to look around the room at the 21 People who were enjoying dinner and just being together on this wonderful day. So I posed this Question to Myself!! If I Could look around this room and pick just one Person to Give this Disease to so that I No Longer had to Suffer with it, WHO WOULD IT BE. ? So many Options! And before I could even scan the whole room I felt my Eyes start to Water and felt a tear run down my face. And it was at that very Moment that I decided how Truly Blessed I Am. Because if my Having this Nasty Disease saved the people around this table from having to live this Nightmare THAN I’M HAPPY I HAVE IT. And suddenly my focus became on doing Everything in my power to be as strong as I Could. So some days I Cry -some days I have little temper tantrums -some days I’m Funny as Hell -some days I clean my entire house and than just drop from exhaustion -( but it’s easier in a clean house because my OCD doesn’t make me crazy) some days I go shopping or out for lunch or dinner with friends -some days I just lay around in bed and watch TV. Some days I go into my craft room and get creative- some days I just take the day as it comes. Having MS & Fibromyalgia & Diverticulitis can be extremely challenging most days are very painful and several symptoms of these Diseases decide to come out and play together, and that’s not easy, but the fact that I’m still Alive and can Feel, Weather it’s Pain or Emotion I Can Feel. And many didn’t get this Option. So go ahead and feel Anger-Confusion-& Ask Questions-Share your Stories-Share Things that you have found that work for you, because maybe they will work for others-feel Free to have a little pity party if you need to-push Yourself to do things you don’t think you can do, if you can’t do it your not a Failure because you Tried. So try something not so challenging and give it Hell. Have Open Honest conversations with your Family & Your Medical Care Providers, if you don’t Educate Family and Friends don’t expect that they will understand you or your Disease, if your Dr. Doesn’t know about all of the things your going through, how do you expect them to give you the best possible care. If Insurance or $$ is a concern, tap into the Wealth Of Information offered through this site and many more. Just sign in and vent get the weight off of your chest so you can feel better. And Always Remember How Amazing you are Because you are a “Warrior” and Not Everyone can have the Super Powers that you have.
1. monid Member
 Hello, Sweet Sunshine 😀 I love your post. I have traveled the same emotional, physical and cognitive windy roads that you have traveled. Interesting that you use the word "warrior" to describe the unique character of those of us who live with and navigate this disease daily. I formed a team for WalkMs a few years after my diagnosis. I wanted the team to represent strength, hope and empowerment (even though I didn't feel any of those feelings at the time LOL). I know feel that I can step into my role as team captain for my team the "Warriors of Hope" with pride and conviction. But, please know that it has taken me many years and many tears to arrive here. I have learned to no longer apologize for "the new me." "The new me" may have to cancel plans or may need a longer time to recover than I used to. But, that is ok. I have to accept ALL that is me before I can expect someone outside of me to accept it. I now wear my Cape with Super Powers proudly. 😀
stumblingbumbling Member
Yes, it would be nice if others understood our blight, but we have to ask ourselves, how much do we understand others? forums are great for like minds. an understanding sponge if you will. Other than that I think it is important to cherish and thank those who do understand. Relationships are two ways!
bettybeem Member
MoniD, loved your article. Sunshine, great response. All other comments were so relevant. Perhaps the only comment I have is the importance of tenacity. Tenacity in seeking the best medical care from all your physicians and related professionals, tenacity in problem solving to solve changes as MS advances, tenacity when fighting to recover from a flare, Tenacity in self care, tenacity in exercise program based on your unique symptoms at that time, tenacity in educating friends and family about your MS, tenacity in pursuing new information about scientifically sound treatment options to treat flares and day to day symptoms, tenacity in pursuing your passions, tenacity in maintaining your spiritual values and practices, tenacity in realistically assessing your psychological health and knowing when to seek professional help, Tenacity in adhering to your medication schedule. Tenacity to pick yourself back up after fake fluff times and pity parties. Tenacity in refusing to compare yourself to others - both those who have MS and those who don't. Tenacity to continue to set realistic goals.