Here is a letter to the people in my lif... - My MSAA Community

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Here is a letter to the people in my life who I call the normals. I hope it all fits. I can be a little mouthy from time to time.

Chameleon3 profile image
34 Replies

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will help open your eyes and heart to what life is really like for me…hopefully giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that Multiple Sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me pull off the mask for a moment. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try and tell me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil and baking soda…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no right answer. Feeling better than what or when? Yesterday? Ten minutes ago? Last year? Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the next movie coming out. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exists. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Written by
Chameleon3 profile image
Chameleon3
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34 Replies
Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi, your in room who totally understands Chameleon3 we all get here! ☺️

Now about you? Great pic btw!

🤗💕

J🌠

Chameleon3 profile image
Chameleon3 in reply toJesmcd2

I have come to terms with it. I do not take any medications because well, I have never taken anything in my life. I will not injest pharma's poison. I use positive psychology, meditation, and diet. I also still work full time, engage in foot pursuits, subdue and arrest people by physical assault. I refuse to lose my first fight against a bully. It works for me.

Thank you for your reply.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toChameleon3

Oh a cop. Great to meet ya.🤣😂 ☺️ I will try not to hold it it against you!😂😂

🤗💕

J🌠

ktaylor8899 profile image
ktaylor8899 in reply toChameleon3

Wonderful to see you’re doing well and working! Thanks for all you do! I was diagnosed 3 yr into my law enforcement career and after 3 months of medical leave my doctor wouldn’t approve for me to go back- so I took a medical demotion to HR for the department. I miss it something crazy, my husband is an officer so when he brings home his stories so so long for being back out there. But I have to look out for my health first 🤷🏼‍♀️ keep up the awesome work :)

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toktaylor8899

I'm surrounded! 😂😒😒🤗💕

J🌠

Chameleon3 profile image
Chameleon3 in reply toJesmcd2

We have our eye on you...always.

Ha ha ha

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toChameleon3

Good luck with that! Chameleon3 was raised by the best of um!🤣😂

🤗💕

J🌠

Kenu profile image
Kenu

This was a great read 👍. We all know what you mean about people judging you by the way you look. If I felt anything like they say I look it would be great, but I don’t. Like you said we are all great at putting on our masks 🎭. Really liked what you said 🙏👍🐾😎Ken

Chameleon3 profile image
Chameleon3 in reply toKenu

That is why I am named Chameleon. I work in police intelligence and can become any person as a legend (an assumed name intelligence agent take on assignment). I had 3 legends, and with MS, I have 4. I am the "I am doing ok, don't worry about me" person to my kids, my parents, and my team.

jimeka profile image
jimeka

You got in one. Great read, and the truth, blessings Jimeka 🦋 🤗

Chameleon3 profile image
Chameleon3 in reply tojimeka

Thank you.

Doubled51 profile image
Doubled51

That was an awesome read Chameleon3 . If we could just spread the word to the world that til you live MS you know nothing.

We don’t need sympathy just understanding that you can’t look at us and judge how we feel. Things can change in hours or sometimes in minutes.

Enjoyed your post greatly.

Donnie

Chameleon3 profile image
Chameleon3 in reply toDoubled51

I am glad you did, Donnie.

Fancy1959 profile image
Fancy1959

Chameleon3, you couldn't have summed up MS any better than you just did! I love it, love it, love it! Thank you so much sharing. I believe anyone in the chat room who reach your post will be able to relate to numerous Parts in it! Fancy.

Jazzyinco profile image
Jazzyinco

Chamelon, that was an awesome read! WOW!👍🎁💗 & I too am managing it all naturally! Don't want the poisons either💉💊💉, either💉💊💉I believe they are the calm before the stormz⚡⚡☁🌀 So, I want to give you a nice warm welcome to us who get it! The best supportive MSer Warrior Family on the webby! So, thanks for that awesome post!!💗❤💚💙💛Prayers🙏, Love & Blessings for ya!---Jazmine🌹💜Rose

carolek572 profile image
carolek572CommunityAmbassador

Hey Chameleon3,

Excellent post!

However, like Jesmcd2 mentioned, we all get that post in this forum. Perhaps you can send this to your local paper as an open editorial. Just saying. Until we let persons who are not personally affect by ms, i.e. have ms, no one really understands what is really this disease that we have.

Thank you for this eloquent post.

Keep smiling,

Carole :-D

Chameleon3 profile image
Chameleon3 in reply tocarolek572

I am sorry if you feel that this post was inappropriate.

carolek572 profile image
carolek572CommunityAmbassador in reply toChameleon3

Quite the opposite, I feel that it was very appropriate, and very well written. I believe that you could send along to a newspaper so that it can be read by a bigger non-ms audience.

I apologize if it didn’t come out that way.

Chameleon3 profile image
Chameleon3 in reply tocarolek572

It's ok. I am not easily offended. Trust me. I have seen stuff no one should ever see.

kiss kiss and all that jazz

Aaron

Raingrrl profile image
Raingrrl

Wonderful post Chameleon3 ! You have a talent with words. Everyone here with MS can relate to this and it might help the caregivers here understand better. One of my biggest aggravations is people without MS, or something similar, that say they know how I feel. I keep my mask firmly in place except for a select few.

The people in this forum are a wide range of ages and experience. MS affects everyone a little differently so it’s a great place to share information.

LuMed79 profile image
LuMed79

This is just awesome. I tried to copy it so I could share it as well but the app is buggy. This is something that needs be shared all over social media for all the normals to read. I’ve felt all of this at some point, recently more than ever. Thank you.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toLuMed79

Hi LuMed79 nice to meet you! And welcome! As far as copying other peoples posts please ask then 1st out of consideration o them.

Much love

🤗💕

J🌠

pamgarner profile image
pamgarner

AMEN!

Diva1976 profile image
Diva1976

Preach on! Amen!!

Rndcowart profile image
Rndcowart

Wow, you really hit the nail on the head. I'm sure we all can relate to 100% of these things. No one knows how it is except those of us that have this monster.

barbaradonnahoe profile image
barbaradonnahoe

Double Ditto to EVERY word you wrote. It's SO good to hear I'm not the only one who feels this way. Thank You!!

KC0808 profile image
KC0808

Thank You! Thank You! Thank You!

I'm having one of those really horrific days sitting here by myself scared, hurting and crying wishing someone was here with me who understood just for a moment what I'm going through and I read your Fabulous post! I so needed it. Perfect timing oh I'm still crying but I know the tears will soon stop. So again I say thank you for taking the time to write what I also feel.

Take Care of You :)

KC

.

lbenmaor profile image
lbenmaor

Beautifully expressed!!

Leslie

timothy228 profile image
timothy228

yeppa could not have said it better it takes one to know one all the drs i seen you know the ones (the best) none of them have M.S. yea they all know someone who knows someone you dont get it unless you have it so no more lets try this maybe this nah call me when theres a cure (not in my time im 62 so we deal with the cards we are dealt i woke up today and the sun shining i can still walk even if it looks like i am stone drunk aint drank in 25 yrs for today i got it made!going for a walk with my German Shepherd dog she knows!i dont know how but she does we got good days and bad end of story its called life for us if we can still walk or im not blind or some other icky ms crap were good to go

carolek572 profile image
carolek572CommunityAmbassador in reply totimothy228

Hey timothy228,

Please keep up your great attitude! It really does make a difference. I believe that attitude is everything!

Stay strong,

Carole

Ebrod profile image
Ebrod

Well said... we do the best we can and God does the rest... Thanks for sharing; if you are ok with my sharing this email with my inner circle, I will share, I dont always have the words. My brother, mother and sister may garner more insight into me and my MS. Thank you and God Bless, Elizabeth

Chameleon3 profile image
Chameleon3 in reply toEbrod

You can share with hose close to you, but you may not post this in any public forum as my writing is copywritten and I exercise that right. I am glad you liked it.

Ebrod profile image
Ebrod

Great, thank you, you captured my thoughts and words!! My family needs a big reality check with my MS and its impact on me!! “You look so nice today” while appreciated, one can never see my internal nerve system/unwelcomed chaos inside ( not even an MRI)! Eeesh! :)

hairbrain4 profile image
hairbrain4

First of all, thank you for what you do and even more so with the body you have to do it with, yeah it looks great on the outside but the inside doesn't always want to cooperate. Those of us with MS get that. I pray that you will be able to keep on keeping on for a long time. Your letter shows you have the right attitude to have with a disease like MS. Like everyone else has already said...you nailed it. Thanks for sharing.

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