An Illustrated View of Multiple Sclerosis
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- Simplify your life.
- Watch your thoughts. What goes in, comes out.
- Surround yourself with positive people.
- Take time for yourself, even if it means saying "no" to others.
- Be grateful, laugh and celebrate life.
- Think more about what you have as opposed to what you don't have.
- Help others.
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About Positive Living with MS
Positive Living with MS was started by Penelope Conway after she was diagnosed with MS. She found few resources for positive encouragement; to laugh, cry, share, and just feel normal in the midst of a life of chaos; so she decided to start something herself. Positive Living with MS was birthed out of Penelope’s desire to show others that regardless of the challenge, we can all enjoy life to the fullest and find a smile in the storm.
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As of to day I have lost my taste buds didn’t know that it had anything to do with my ms but guess what ms has found a other way to knock me down I was diagnosed with ms in 2008 please keep me in your prayers as I will keep you all in my prayers
Hi Wanda…I just saw this! I have that issue quite frequently; it comes and goes, but is mostly here to stay. It’s one of those weird “SURPRISE…I’m a SYMPTOM” things. Be mindful of milk! It gets me out of telling someone that their cooking is “less than”!
I actually lost my taste in 2014 and that’s how I was diagnosed. It only lasted for a few months but losing my taste was the beginning of my journey.
I am feeling and am out of control……..that is the worst I have ever felt. Depressing, but nothing to do but thinking tomorrow will be better.
I know your challenges. Sometimes, it’s too hard to even think about tomorrow because somehow, someway, I have to get through today without breaking down in tears. You’re not alone.
I too went through the lowest these last 2 nights. I actually had to call the Suicide Prevention Lifeline because I was feeling too low. They put me on hold for so long, I called a friend instead.
I just read your message please don’t give up. Your in my prayers because I to have MS and it’s been an extreme life change but I know it will get better and more manageable. May God Bless You
Don’t give up! I tried suicide. I thought for sure I got it right. Nope! Still here, thankfully. I could have been in a worse position because of it.
I am so sick of being sick! My latest symptom to creep up is uncontrollable bowels. It has affected everything! I had to take fmla from work and my boss is not the nicest woman. If she could feel, for just ONE day what I do, then maybe there would be some compassion and understanding! I know I look fine, but lady if my ms was visible I would look like a freakin monster! 😕
Stay strong… I think my bowels are starting to go too… I’m rooting for you
So sorry to hear what you have to endure with a noncaring supervisor on top of MS! I pray things will get better for you!🙏🏽 I think we work for the same person! 😢
you should try and go see a urologist. my urologist help with prevent the problem with my bladder and bowels. I had it worst with bladder. your boss should know better then mess with you. cause you are protected by ADS and she can get in big trouble if she violate any of your rights under ADA.
I am using medical marijuana as the
last road. Let me see where this road takes me.
I’m afraid to use medical marijuana. because they can not tell me for sure it will worsen my already issue with my thinking and damage MS caused to my brain. So afraid will progressive the damage in my brain.
Have you looked into CBD Oils. Also. I have bladder and bowel issues as well. 11 years ago I had a SP Catheter surgery. My catheter comes out of my abdomen/pubic area. Best decision I ever made. In regard to bowel; I no longer eat greasy or deep fried foods. Esp if I am not at home.
How are you doing on the marijuana treatment? Any improvements Heidi? I was too scared to try it and my psychiatrist says it benefits some for a while and others not.
Since I have been on Betaferon injections every second day, I have duller pain and very few relapses where I needed steroid treatment. My neurologist gave me medicine to take in the morning called Neucon which is used to treat ADD or ADHD but in us MS people it has the opposite effect., it actually makes us more awake and energetic. I don’t need sleep during the day anymore and sleep well at night from 10pm to 6am.
The adjustment of my medication by my Neurologist and Psychiatrist has made a great change in my life. The Illustrated View of MS are great.
When people believe you’re perfectly fine because you hide things so well that it appears you’re functioning somehat normally. So,when you mention a headache or body ache they quickly compare themselves to you and say, oh,me too! Excuse me -Do you have MS? Then, no. You dont know what it’s like.
I recently heard this saying that I tell people when they try to compare there pain to mind” I am not look sick on the outside but on the inside it feel like the MS is alien trying to kill me from the inside of my body ripping though every part of my body and trying to get though my spine. when you feel that kind of pain come talk to me.
Thank you, thank you! The illustrated view of MS is a wonderful way to explain this to anyone but especially for children The drawings are eye catching. The captions are both simple and smart.
On a more personal note, I am ecstatic to encounter a MS website that is informational and promotes positive thinking.
I agree – thanks!
That’s me….except for the sleeping part..rarely get sleep.
Exactly. So true. Real life. On point. Reality.
The reason I can no longer work as a Social Worker. By 2 pm I am done.
Hi I have been diagnosed since 2015 and just about to start my social work degree. I’m hoping I can cope with the hours. So sorry to hear you cannot do this anymore. it is a worry of mine that this will happen to me.
Leah, go for your goals. I was dx with MS in 1994, in Oct right when I had started my dream job as an Elementary School Counselor after finishing my masters. I was so discouraged but determined not to let it keep me down. I loved my work and didn’t retire until 2014 because of my MS progression….which I was very angry about, but I managed to get 20 years in doing a job I loved with so many children i’ll remember forever!
I am dealing with this so bad here lately.
SAME STORY ALL THE TIME,,WE KNOW
I feel like this today.
Very true!!!
My husband says our house could be in fire and I wouldn’t wake up.
And it usually happens on a nice day. When mind says go out and body says NO WAY GIRL.
Yep all that and more..welcome to the world of MS
One if the worst things about MS
I totally agree!!
Iv felt knackered all week and body aching all over
Thats true. My employer dont understand how i feel
Fatigue shuts my brain down…
So true
I wish I could just fall asleep like that! After all that misery, and then have trouble sleeping! Uuugh
So trues
Reality
POSITIVE ABOUT WHAT ? MAYBE BECAUSE WERE STILL ALIVE
That’s about it ecept the PAIN I feel every single day
Oh the pain! But I find some relief with medical marijuana or CBD oil .
Of everything listed I don’t have 10, 15,16 & 20. Praying I never do, the rest is more than enough for me.
Yup. It’s hard to explain this to people. It can happen so fast.
Yep.
I do hate the fatigue, but really, really, really hate the ms hug. Who would ever name it something nice like that? Wait…someone who has never dealt with it. Silly me!
sadly autoimmune diseases do not keep their symptoms neatly in labeled divisions by ailment…wait, it is all one big f~[£ing ailment
Yes except when you don’t sleep well
This is me today…..
Sad but so so true.
Urgghh. I need a nap
Yes you can only really do one thing on most days. Sometimes nothing. Sometimes on a really lucky day more than one thing! Xx
I hear you there! So hard 😓
Except I crash and still can’t sleep. 🙁
It stinks!
Beautiful
so very true….a trip to see the doctor is major for me..just getting ready and then going and then waiting and then coming home and by then I am done for the day !!! Sounds crazy I know but true !!!
Completely agree I’m a veteran an I feel the same way but I completely enjoy the time I’m out and try to do as much as I can before I get home cuz as soon as I do I know I’m not going to be able to do anything else
POSITIVE ? ABOUT WHAT ?
Perfect summation .
For me the fatigue skips my extremities and melts my face instead
Oh gosh my face goes funny too! It did before I got diagnosed. Xx
Yep, good description.
Random cramps in your legs or that thumb thing? Hate it
Yep….
On stilts.
Isn’t that the truth?!
Unless all the aches and pains keep you from sleeping…..
5 things not to eat if you have MS.
https://youtu.be/xIjOzDmFA-E
Yes, yes…indeed. All so very true.
Several of these aren’t on my radar screen…and I’m grateful for as long as they stay away.
And to hear…’you look so good’ means that I must be just fine…because I know it’s not all in my head. Such a nice compliment to hear…and then I find myself questioning the speaker AND myself. It almost can feel like a form of gas-lighting at times. We’re okay….we live positively with MS>
I agree! So true! I also try to hide what lies beneath, but it peaks out every once in a while.
So true. I try to hide the stuff lying beneath. Sometimes more easily hidden than other times
Truth!
Carla Simmons Burnett
Steve Hall
How very true
What they don’t see changes day to day, if not hour to hour.
Exactly!!
Aahhh… sooo fuckin true ! Someone knows.. someone writes about it.. but no one understands :'(
Yeah it kinda isn’t good.. but will be ok