Hello, My mum was diagnosed with MS when I was very young and it has devastated my family. Therefore, I have some experience with how MS can change a person and the effects it can have on the entire family, but I was hoping to reach out to this community to hear your first-hand views of living with MS.
So in a nutshell, what do you wish more people knew about MS?
Thank you 
Personally I dislike the âYou look wellâ comments. The looks can be deceiving and donât just a book by the cover sayings come to mind. We may look well but be suffering in soo many ways you canât see and well tbh most rarely what to know. Even if they ask.
Just because weâre not all in wheelchair, on crutches or needing other walking aids doesnât mean we donât have a disablity.
Male, viewpoint, sorry. Catheterising takes longer than peeing normally. Consider shoving a small tube inside a tube. The smaller tube reduces the normal flow amount and thats without considering the usual force the average person urinates with.
Stop giving us gifts youâll think will help with out having a clue. Personal example xmas 2021. I donât want nor need an electric blanket. It wonât help my MS, even with meds I still get burning sensation starting in my feet spreading up my legs. How far and the intensity depends on how tied I am on any given night which is why I fidget in bed as my legs chase to cold parts. keep in mind Iâve been diagnosed since 2014 and had symtptoms going back to 2011. Burning being one of the first symptoms. Think youâre dad would know that. 
Saying, impying weâre being lazy is not acceptable. Itâs nice to a have little more energy sometimes but that doesnât mean we want to use it all just because we have it available. Conserving it for later can beâŚcomforting, knowing should we need a little extra we have some energy available.
Be considerate of our energy levels. Challenging your older brother to and Armwrestle doesnât make you look like a strong younger brother. I have MS and you know full well I tire easily and Iâm aready shattered by before 8pm
The trying to play things down. By saying you experience something we do when itâs not the same. Donât go on about how you have a little x because weâve just told you about a new symptom. If youâve asked whats going on just listen. I donât want to hear youâve got a little double vision when you drive when Iâve just put a spoon of coffee in your mug with the tea bag. Iâd slap you if I had the energy to spareâŚWhat my my dad, a professional driver said to me a few years back.
Ermm prob got some more but a little tired and that is a little depressing
Bottomline is if you ask questions, just listen.
I am very new to MS. I have very recently been diagnosed and it has been a crazy year. It is funny how hindsight is 20/20 but now that I look back, perhaps I have been experiencing symptoms since 2015 and became a bit more pronounced after I had my 3rd in 2016 but everyone assumed I was just an exhausted mom running around with in-laws to take care of as well.
But now, idk if I am going through the motions but I feel people know absolutely nothing except assuming you need a wheelchair or a crane and if you donât then its not MSâŚ-_-.
I also do not really mention anything at homeâŚbecause if I do happen to mention how I am feeling then the person who asked says how they are feeling this and that and how their symptoms of whatever they have is worse and I can solve my issues by walking or etc etcâŚand I end up getting really frustratedâŚand the worst is because I still seem ânormalâ often others forget I have anything at all and act like its nothing and I will âget over itââŚ
In a sad turn of events my mother is auto-immune with sarcoidosis and graves disease and she understands my feelings and pains more than anyone and its brought us closer.
For me, itâs that MS isnât the end of the world.
I donât need you to start every other conversation with âIf you get X illness, youâre going to DIE!â. âYou ARE going to wind up in a wheelchair full time, so you may as well remodel your house right now.â âYouâre going to wind up bedridden, your kids are going to disappear, and youâll be all alone because you canât afford household help.â âHave you made arrangements for your funeral yet?â. âWhy are you planning a garden? You know youâll never be able to take care of it properly.â âWhy do you keep planning for a future?â.
I am well aware of my abilities and limitations. I know the possibilities that exist down the road with MS. I also know that I am very much alive right now. I enjoy life. Iâm at peace with my illness. I take it one day at a time and donât need you trying to convince me that my life is a waste and that I should just crawl in bed and give up.
I lived with MS for 45 years before getting a diagnosis, and Iâve adapted just fine. Your negative comments are not helpful, and I feel sorry for your miserable outlook on life.
not as long as I have breath will I do that. I agree with what you say. we know our own bodies and our own capabilities. xx
May I ask why has it devistated YOUR FAMILY?
i was diagnosed with PPMS in 2016 I know i have had it since 1999 as i can pinpoint the first symptoms I have had.
Your mum I assume is still with you, was diagnosed with MS, was it RRMS, how did it affect her? She must have been shocked too. Did she or is she still mobile?
Any long term illness can change someone. Sadly yes family have to step up a bit more and rally round and help. Its not always ideal. My daughter sadly had M.E. when her children were young and spent nearly 2 years bed bound. My two grandkids became her carer. They did a good job too. Yes it had some effect on them obviously but they survived and myself at the time supported her as well.
My family have left long ago, so when i got diagnosed in 2016 it was just me and my hubby. my mum passed a month BEFORE my diagnoses, and my husband passed 2017, so since then I have been iiving on my own. But I WILL answer you.
LIVING WITH MS sucks. Every day is different. you cant plan anything, so dont ask if you can come and take me shopping or to the garden centre. a) i wont know if i feel like it the hour before we leave, and b) i dont want to go anyway as it just reminds me of all the things i cant do.
DONT ASK ME TO go for meal. No thanks I cant think of anything worse then sitting in a cafe or restaurant. a) because sitting with legs down is hard for me to do, and b) my bowels will play havoc on me lol.
DONT ASSUME to tell me you know whats best for me you dont. DONT TELL ME YOU NEED TO EXERCISE MORE.
NO I DONT. Just getting on and off the recliner many times a day to pass urine is like going on a marathon hike. Its EXHAUSTING. If i thought i could exercise I would believe me.
YES I GO TO BED AT 5PM, as by then my body is just exhuasted the spasms are out of control and i need to lie down. Yes i go to sleep at 7pm, why shouldnt I. NO I DONT WANT TO SLEEP IN THE AFTERNOON.
DONT TREAT ME LIKE AN IDIOT and stop patronising me talking to me like I was a child I forget my words so what SO DO YOU i say to my daughters lol. their memory IS WAY WORSE then mine.
DONT ASK ME HOW I AM. THEN PROCEED to tell me OH I GET THAT, yeh my lady with MS gets that, who cares I DONT.
If my right shoulder aches my daughters left one aches, if i have blurry vision, they have same, i even said you now what overall i think i am more HEALTHY then you lol.
I AM NOT ILL. stop treating me like I am. I am simply NEUROLGOICALLY CHALLENGED.
DONT DROP ON ME UNEXPECTED. I hate it. your idea of a surprise to me is HELL. I have to live in order. EVERYTHING I DO IS PLANNED my day is. IF YOU DECIDE TO TURN UP AT 12.30 all you do is screw up my routine. at 1pm i am having my lunch. 2pm i am resting. it is MY LIFE how i deal with it. Turning up like that puts me in a spin and ruins the rest of my day lol. YEP it does.
IF YOU DECIDE TO VISIT me, check with your sibling see if they have already made plans to do so. I cant deal with you ALL DECENDING ON ME.
I know what i need. Basically i have simple needs I am not complicated. I know what my future holds and i am planning accordingly I am not stupid no way actually having MS has allowed me to research and learn new things it can be fun.
MS is NOT A DEATH SENTENCEâŚspinal cancer is a death sentence. I know more people who i have loved friends who have died of terrible cancers. I dont personally know of anyone who has actually just died of MS. I know what to look out for i have MS so what. DONT MAKE IT HUGELY IMPORTANT to me it isnt. I have lived with it so long its just part of who I am.
DONT ASSUME YOU KNOW WHAT I NEED YOU DONT. your just guessing. MS is a snowflake disease it affects everyone different. If YOU TREAT ME DISABLED I WILL BECOME DISABLED. Let me do things MY WAY.
So in a nutshell BACK OFF.
that is what I tell my kids lol.
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Ha! I like that. So often people say similar things. I think it is a way of trying to be empathetic. Unfortunately it feels exactly the opposite, like they are saying it is just normal and what everyone has, and actually therefore no big deal, and implying âso stop being patheticâ.
One thing we learn on here is that everyoneâs MS is different. And for many it fluctuates over hours, days, weeks. That what someone can do at one moment may be difficult an hour later as fatigue, for example, sets in. People need to realise that if they are arranging to do things with someone with MS that they may need to change plans at last minute because MS has a habit of fluctuating. They need to be flexible, and go with the flow.