The monster attack each of us insidiously and in different places. Often times we are blessedly ignorant our body is even under attack until the damage has been done. To help make us feel less isolated I've created this post. Understanding that many of the little and the not so little nuisances we face daily are also faced by other MS patients. Many are nothing more the little nuisances but we must learn compensate for on a daily bases. But then othes are life threatening and life-altering weaknesses that forever change our lives.
Here is the list i put together so far. Feel free to add to it and comment on it.
i have trouble;
Tying bows on my shoes and clothing .
Cutting my toenails
Getting dressed quickly.
With using my hands, they have no fine dexterity.
Bright lights are hard to look into.
Keeping organized.
Finishing a project before I start three others.
Finding my keys.
Keeping my bladder and bowel from being incontinent.
Walking without focusing hard on foot placement and balance.
Not fighting muscle spasticity in your hands your feet your arms and your legs.
Buttoning and unbuttoning buttons.
Not jumble your speech or stutter, or loose your train of thought while you are speaking.
Walking safely across rough or unlevel ground without assistance or safety equipment.
Having the hand strength and grip to hang onto objects without dropping them over and over again.
The ladies the lack of feeling pretty because of the difficulties you have putting on makeup and fixing your hair.
For the gentlemen fear of using Power Equipment that they use their entire life due to fear of hurting themself or others.
Having stamina to work a half a day. Having strength enough in your arms to lift them over your head repeatedly or strength in your legs to walk like you used to or stand up for an extended peroid of time.
When you put it in writing it becomes mind-boggling how much MS has stolen from us. Is it okay to be scared, this monster still scares me every single day of my life. What every person battling this monster must remember is that Ms does not make you any less of a person. Reach out and help someone next to you. The single most life-altering decision i have mady in my adult life was to join this chat room. In my time of need, when i felt that my years of being a productive member of society were over I found a new purpose life. I am once again a productive member of society not a disabled broken outcast. Join me, join us because together we are stronger!
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Fancy1959
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Fancy, a couple of things that come to mind for me are not wearing high heels (I loved my high heels), and not being able to walk my dogs very often. Of course there are countless things stolen that I could list, but those popped in my mind. You put a great list together! Kelly xx
I miss heels, too! I have a pair of wine colored eel skin heels and matching clutch bag that I bought in the Bahamas twenty five years ago that I just can't let go . Maybe some day I'll get to use them again?
Kelly, thanks so much for sharing. Long ago and far away i too loved my high heels. Looking back I realized the sudden and extreme pain they caused me in the ball of my feet every time I wore them was probably MS related. That was long before I ever even considered anything was wrong with me neurologically speaking. I hate to admit it but every time I see people simply walking down the street or walking their dogs, I think to myself they don't understand how lucky they are!!!!
I know it can be tough but we are still very fortunate to have this disease. We need to keep faith that therapies and the new drugs are being developed at a pace never-before-seen in the history of MS. Let us remember to reach out and grab each other by the hand and gets through the small and the not so small difficulties with encounter on a day-to-day basis as we fight this monster recall MS.
Fancy, you are so right that we are fortunate to have this disease. I know I am more empathetic to others, I turn to God all the time and have learned so many lessons from it. And I love that you remind us that together we are stronger! 😍 Kelly xx
I can still remember (my girlfriends birthday party-a real dress up affair) the first time I realized that I could no longer wear high heels-a simple thing maybe, but it was another life changer realism
Fancy1959 u covered many of mine. I think being here in this chat room has helped me realize that some of the nuisances that I've learned to adapt to (difficulty tying my shoes, panicking when I have to walk down a crowded sidewalk filled with obstacles, startling easily and exaggerated....so many others) are shared by others with MS.
B/c MS is so different for everyone, they can't capture all possible symptoms in the literature or at a doctors appt. so I'm left to wonder...
erash, you do indeed understand the beast very well. I wrote this with your statement in mind that I was very afraid so many people out there thought they were the only one in the whole wide world that couldn't cut their own toenails or couldn't manage a skill they learned in kindergarten, tying their own shoes.. I'm hoping we all understand we aren't alone in this fight against this monster that has invaded our bodies. That we simply aren't alone anymore in our fight against MS. Fancy1959
I can't do French braids on my granddaughters and dancers anymore - a regular braid is still manageable, for how long I don't know but for now, it is fine.
Let us ALL remember: We are so much more than this MonSter that is in our bodies!!! I've been fighting him for 30+ years, and like many, I will NEVER give up and I will NEVER give in... Perfect recent example: I had to thread a needle twice to sew two buttons on my slippers that had fallen off. If I had perfect vision and normally functioning hands, it would have taken 15 minutes. Instead, it took me 2 1/2 hours. I DID NOT GIVE UP!!! Many times a day I face all kinds of things that are more difficult, more challenging, and more cumbersome. The key is to press forward and not to give up! Little by little, I accomplish what needs to be done. MINDFULNESS is the key for me, and when I focus on whatever I'm doing, I accomplish what needs to be done!
I was a performing dancer from age of 4 and a college gymnast and then a few went by and guess what hit............................MS. We all can remember when 'it' was easy and we could type 120wpm, yikes, those were the days, my friend. xoxo
LOL...I was a total speed typist too (100wpm on which built two careers) and was a graphic designer... I MISS running my own business, but I REALLY miss my customers!!! I was BORN to TEACH and SELL! Come from a family of teachers, taught on the corporate level, and owned two art galleries and a fine housewares store... I so BLESSED to have had those experiences as well as traveling extensively... Ahhh, I AM SO LUCKY that I had three careers and a wonderful collection of experiences prior to the MonSter kicking the heck out of me... Now, life is simple and often feel like a shut-in... Luckily, I've shaped my life allowing little trips in my little town in the morning when my energy is best... It's a good!!! I LOVE my little life, MonSter and all... xo Cj (pronounced Seejay)
I know you have so many accomplishments to look back on and it will see you through a lot in your future as well as all of the friends and contacts you have made. I loved hearing you talk about it all. Good for you CJ, sorry MS came into your life. (I get tears but I know I cry as much for me as for anyone else-it has been rough but NOT today, today is good)
All it has really done for me is to teach me howstrong and stubborn I can be!!! I am WOMYN, hear me ROAR!!!
My brother died of muscular dystrophy in 1989 at 21 yrs. old... I can LIVE with the MonSter because he was so STRONG in the face of death!!! (Love you Billy...)
lindanceand ddeadred, i miss the outdoors the most! The long horseback riding trips, the backpacking, the camping....you are right, no one can take our life experiences away! Not even MS! Fancy1959
Amen deadred, amen! We all have different needles to thread! I liove your attitude. never give up, never give in.............remember together we are stronger! Fancy1959
Giant headed needles are our friends! Have some antique packs of needles with 50+ assorted needles, some with large heads--sold for 15 cents a pack long ago...
will put a bug in my Mom's ear to pick me up one as she shops there... had one at one time that did not work well but bet they've gotten better... mine was generic from a close-out years ago...
Jesmcd2, thanks for the input. It takes each of us adding our insights and working together to conquer this monster at its own game. Each and every small tidbit of knowledge adds upon the one in front of it and together they build a wall we can use two defeat this monster with. Fancy1959
Fancy1959 , I appreciate you sharing your list of struggles and loses. We can mourn for all of these things, or we can celebrate our triumphs and resiliency.
My thoughts as I read your list were, first, that we share some of the same issues, and, second, that a list like this is a good tool for self evaluation. My neuro always asks about changes in spasticity, numbness and things like that, eye issues, etc. I usually say everything is static, but is it? I'm SO used to compensating for one little problem after another, and have done so for so long, that I'm not even aware of the changes. Then, sometimes, I recall how I used to do something, and wonder then it changed.
Right now, I think making a list of capabilities and another of struggles and losses would be a valuable tool is assessing disease progression - a benchmark of sorts - even though the thought of it is both frightening and saddening. I really don't want another visible reminder of this monster, but it can also be a way to help me celebrate all that I can do and overcome.
Eleyne92, it's Fancy, i wrote the list, and i know it varies from person to person, as a way to let people understand they were not alone in their daily struggles. And understand that many of us struggle the same stupid little things that drive us nuts!! we all have our own needles to thread!
This was deeply moving and an amazingly 'right on' and accurate explanation/interpretation of our daily and lifelong altering MS trials - though it is sad, it is what has happened to me too, but yes I have also found a way to be a 'participant' in this life. Thank you, thank you for sharing...Linda
lindance, you are very welcome. i am glad it has generated so much thought and although our losses are sad, our resilience and fight are what MS can never touch! Fancy1959.
What everyone has said makes so much sense! I used to wear high heels as well and loved wearing them. My favorites were the 3-4 inch heels I can't wear anymore. So sad, but MS came along and I didn't realize the boots I always wanted, with the very low heel and not flat like I should be wearing, made me walk funny, trip, etc.
I still try to write and draw, but my memory doesn't work like it used to either. I can't stop myself from thinking I want paints and the many items that help me paint. Just this past weekend I bought new brushes, paints, palettes and a higher card table to paint on. I loved painting and TRY to tell myself I'm happy that I taught my daughter (who is very talented) and she is teaching her toddler the love of art now, but jealousy creeps in and tells me I need to/want to and would LOVE to paint again.
I'd cross my fingers and hope to write, draw and paint again, but the memory and dexterity is no longer there. BUT I AM GOING TO TRY!
MS will NEVER defeat me! It has for too long! It's time to show the MonSter who is the boss!
Thank you so much for your (VERY TRUE) list and for everyone's comments! Without them my passion would not be where it is today! Jennie
I would love to share some of the paintings I've already done, but was not "allowed to bring my things to my new home" But that's another story.
The last thing I painted was an ugly table I decided needed some cheering up with a poem, butterflies and letters from a bright red typewriter. Not sure how to share pix on here. Fortunately I managed to take pix of this because I noticed something was different with my hands and wanted to be sure I had a history.
Would love to see it, jennie62 ! I know you have to create a new post in order to add a picture. But aren't you glad you took a picture of your artwork? Sometimes I feel a wave of sadness or loss when I view something that I used to do or once accomplished. But then I realize how thankful I am that I did do it..that I did it while I could.
Thank you Tutu for letting me know what to do...I'll definitely share the pix as soon as I make the new post. Oh yeah, I do my best not to become sad (or upset) when I remember all I used to do too. Thank you for letting know I'm so not alone. Once I have all I need, I'm going to paint again.
I have never worn high heels nor do I plan too. Yes, I am a male. One of the things I miss most is a normal/active sex life. I am only 62 and not ready to quit. You are right, MS has taken a lot from us and each little thing it takes is like a death. But, we will overcome and thrive with God's help and the hope we have of a cure.
RobertCalifonia, heels aren't as good as they are made up to be.so, you're not missing out on much there. But i to miss having normal adult relations. i never thought my sex life would be over before I hit 60. Neither did my husband....keep the faith, a cure is not far away! Together we are stronger!
MS in so many ways is harder on men. I agree with you all that you said, I sometimes have to ask WHY and then since there is no answer, I have to move on. Now I bet you are industrious and have looked into creative alternatives for you and your partner-just guessing but your high heel joke 'stimulated' me to think 'ya gots skills'! A resounding yes, 62 is too young to quit...I screamed at MS for you, for me and for all of us "how low can you go MS?"
Thank you for the compliment. My wife and I have found other ways to be intimate. There is Avery good webinar on the Can Do Ms website on alternatives. I believe the webinar is by Rosalind Kalb.
Robert, i will be sure to check it out. If I cannot find it I will contact you back to find the exact webinar it is. Information is always good. I hope everyone in the chat room suffering from similar issues will take youradvise and look into this informative post you have listed for us. Fancy1959.
You can dance with your husband put two hands on his shoulders, arms length, he meets to put two hands on you shoulder. The dance has to be simple but it is doable. I didn't believe it until I danced with an OT at a seminar by Can Do Ms. My left leg is weak, I have drop foot, I wear a brace and my balance sucks. I won't be doing the twist but I can still enjoy my wife
Great list Fancy1959 ! I have a couple to add to the list. First I mourn my high heels too and all the cute shoes I can no longer wear.
I also have trouble going safely up and down stairs especially if I'm carrying something.
I can no long easily read long paragraphs of text and documents full of legalese make me want to cry. These used to be simple tasks for me but no more.
I have trouble reading and retaining information. I can't tell you how many times I look up the weather to figure out what to wear and then forget what I've read in a minute or so and have to look it up again. So annoying!
I have trouble washing my hair in the shower because I tend to lose my balance when I close my eyes. I have to wash it one handed while keeping the other hand on the wall. (In my old house I had a grab bar but don't have it here in my sister's house.)
I struggle to stay alert and awake after about 2-3 hours of activity.
I'm sure there is more but that's all I can think of at the moment!
Raingrrl, it's Fancy1959. like Robert told Sue you can still dance, you just need to adapt. Put a shower stool in you shower and wash your hair sitting down. Please don't go up and down stairs with your hands full. It's not safe with our balance issues. Don't read the entire document at once. Break it down into smaller piece and take notes. When you watch the weather have a paper and pencil handy and jot down what you need to know and take it into the bedroom with you. Then get dressed! Take naps like the rest of us and enjoy them. Why fight what you cannot change, simply adapt and beat it at its own game.:}!
Hi Fancy1959 ! I appreciate the suggestions. I'm actually really great at coping and finding alternative ways around my limitatations. I should be since I've been dealing with this one sense for close to 18 years! I just gave you what the limitations are. A shower stool is not an option in this house. The shower is a molded acrylic type with an uneven sloping floor. I just have to do the best I can while in this hopefully temporary living situation. I ask my sister or bro-in-law to carry heavy and bulky stuff up or downstairs for me. It's annoying to have to do this which is why I'd rather be in a single story place of my own.
Wow! I want to thank everyone who added their insight, knowledge, and experiences to this post! I loved the responses it generated and the thoughts and inspirations it provoked! It's not too late to join in! Fancy1959.
Like Raingrrl , I miss being able to read and comprehend what I've just read. I mean as being able to organize my thoughts and tasks, and getting flustered when pressured to figure things out.
I miss my creative skills...sewing, cross-stitch, and writing (which is or was a huge part of my identity). I still have strength and dexterity in my hands (and I am reminded of how fortunate I am every time I read about some of you here who do not), but my brain is incapable of coming up with what my hands are still able to transcribe.
Tutu, you are currently speaking to one of the "chosen" who has lost almost total fine hand dexterity. Sure it is no fun. But I can imagine that losing one's mental ability to be creative and to work out patterns is also very hard to deal with with. Together we are quite a package are we not? Fancy1959
Hello jbahnan, it's Fancy1959 welcoming you to this awesome chat room. Buttons I hate buttons! And tying my shoes aren't much better. Have you ever used a button closer from a physical therapist? I also think you might be able to find a them at a fabric store like Jo-Ann's fabric stores. They are God's gift to people who can't close and open buttons. If you can't find one let me know and I'll see if I can find one and mail it to you. I'm glad you joined the group, you're now part of our extended family. Hope to hear from you soon and until you do, take care. Remember, together we are stronger!
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