Hiya guys
Hope you are all as well as can be!
I was thinking of doing a few awareness events throughout England. I can’t go solo on this as MS affects us all in different ways. As there is so much ignorance and lack of simple knowledge, what kind of things do you wish others would know and realise?
Thanks beforehand and wish me luck!
Zak
that what is visible on the outside is not how people feel on the inside.
fatigue is not just being extra tired or being lazy.
mental problems are just as common as physical ones.
that’s just to start.
good luck
JBK x
Hi, most folk I meet who dont have MS, think everyone has the RR version and we should all have time off…if only…and that`s not meant to offend those with RRMS.
pollx
The isolation you can feel. I agree with Poll with her statement and the invisible symptoms that JBK says about. The access to ms care and what drugs you can get prescribed vary to where you live. I could go on but others will add to this list Good luck with it Lynn
Hiya, thanks for the reply, I don’t really understand what you meant there, sorry about that! Could you please possibly rephrase?
Apologise!
hiya zak
i would say despite my struggles to talk/communicate and express my opinions i do still have them! i do not like tea for example-it might just take me 10 mins or so to help u understand that but i will get there! assumption is the worst thing for me. please dont assume anything would be what i would suggest/educate about.
ellie
oh and i do still have a sense of humour!
How infuriating the phrase ‘when you’re better…’ can be! 
Yep, I’m likely PPMS and it seems that most people have only heard of the RR type, so they do say “get well soon” and some start telling you about their friend/neighbour and simply won’t accept that there’s other types!
The people in the know just ask if you’re having a good or bad day, that’s enough
Sonia x
make sure that what you say about m.s. is accurate and can be backed up with empirical evidence.
Thanks for all the replies I am noting them down one by one! I get most if not all information from the ms society/trust or any similar established organisations.
My means of getting a message across will be via presentations as I have managed to do two successful ones over the course of the two years. If you would like to see them please message me.
Thanks
Zak
Yeah def what’s on the outside is different how I feel. Yes I like fake tan it makes me look ‘healthy’ but the pain still there. The absent muscles are still there How after relapses it’s not recovery.
I don’t want pity - when people saw me using me use a stick for the first time, I hated them giving me ‘that look’!!
I don’t mind a bit of understanding and practical help or even a bit of humour (however dark) but pity - they can’t stick that where the sun don’t shine!
Tracey x
Oh right I`ll try to re-word it.
A lot of the general public, who have little or no proper knowledge of MS, seem to think that for everyone, MS comes and goes, as in Relapsing Remitting MS. If this was the case, every person affected, has time off with no problems.
Clearer?
Pollx
Hi good question & well done in your aims & efforts
my thoughts are much the same as most , pain isn’t always visible more so id like to see more folks visiting & spending time
with sufferers that cant get out , and not 30min nhs visit but someone to actually sit and talk to those folks affected badly i know
that when & if my support group rings me back if i meet someone in that situation im gonna do my best to help also folks that say its okay rest up you be fine in a few days mean the education isnt getting out there, this came from a family member thus to say they caught my tongue , i would gladly sit at a supermarket & collect when im on the right meds (hopefully next week ) but it seems to me about educating folks on the different types of MS
Hold your head high you should be proud well done mate
respect sheep
I wish that after a relaps you get better and can get on with life. I have rr and cant walk very far and suffer from pain and fatigue every day, But good luck a lot of people even family and firends dont understand.
Hiya
Thanks for the replies they are great! And for the rewarding Boudica, excuse my sloweness! I’ve managed to get a few people to discuss this with directly so hope to get that done soon and get going!
Thanks very much!
Zak
I have SP MS people don’t realise how long it takes me to fo things and how I have to plan days as I get so tired. Sue
Good luck with it Zak.
polx
[quote=“Boudica”]
Oh right I`ll try to re-word it.
A lot of the general public, who have little or no proper knowledge of MS, seem to think that for everyone, MS comes and goes, as in Relapsing Remitting MS. If this was the case, every person affected, has time off with no problems.
Clearer?
Pollx
[/quote] Poll, I don’t think you have much idea about RR either - sorry! Having had RR and now SP I can tell you absolutely that whilst I might have recovered greater or lesser function in the weeks/months after a relapse I was never symptom free and invariably people with RR are symptomatic earlier than PP so have a greater part of their lives affected by it. Of course it’s possible to live a relatively ‘normal’ life in the early stages but don’t kid yourself that it’s an easy ride! Susi
Having to eat lunch on your own because your brain can’t control your knife and fork at the same time as talking to someone else.