Hey, I was diagnosed last summer and to be honest im struggling a bit. Getting fed up with having to explain what MS is and how it affects me. And the amount of people that still assume I can do everything still even though they know just because im still fully mobile I am exhausted and in pain all day every day. And then you have the other side of people who wrap you up in cotton wool! Yes I have MS but im still a human with a life to live !! Anyway sorry for moaning but really bugs me, does anyone else get frustrated with it all. Im only 29 married with a 12 year old son and a house to run, dont like to be selfish and feel sorry for myself but maybe I should a bit more often. I would love to get in touch with others in my position, feel free to contact me 
hiya
i have been diagnosed 9 years now. know exactly whereu r coming from. simple answer is-dont explain! even us with ms cant agree on many things (this site great example!) and so friends/family have got even less chance of understanding so save ur energy for essentials like eating choc and meditation. if i am feeling particularly naughty then i just say its contagious! bad i know, but useful to get rid of a nosy stranger! family do deserve some sort of explaination-u will manage that on ur own terms-of that i am sure. there is info/leaflets available-maybe get some of them for those genuinely interested.
big difference between being assertive and selfish
take care, ellie
hi tickles
whereabouts are you from?
i’m from bolton about 15 miles from manchester.
you could join a ms group. the ms society has groups in most areas.
i prefer a ms therapy centre, my nearest one is trafford.
there are loads of therapies available at a subsidised price.
HBOT - hyperbarric oxygen therapy is fantastic, or you can just get a massage.
there’s a room full of people to chat with and lots of coffee and cakes.
i hope you get lots more replies
carole x
Gosh your post is exactly how I am feeling right now. I am having a relapse at the moment and I’m struggling with a serious lack of care from my best friend. I believe that she doesn’t believe that I’ve got anything wrong with me because she can’t see it!
I am 33 with a lovely husband, a 5 year old and a 2 year old who I decided to potty train this week before my relapse began!
I have this all the time, I was diagnosed in 2005 when i was 24. I don’t like to moan about my ms and where ever I can try to make it a positive part of my life but sometimes you just need a bit of help and support but when you look OK I don’t think people can understand.
I have to explain it often but I give a brief explanation. I know only tell people if i have to as i find it only frustrates me when they say things like ‘I know how you feel’. I had this this morning while explaining to my mother in law that my legs are numb and feel like they have been gripped tightly by a lead coating so are very heavy. She replies with ‘just like being tired then’!!! And she knows obviously that my relapse is due to the fact that I am working more…no not at all but I just say ‘mmm’. I have had lots of lovely support from friends and family but some just don’t get it!
I have now learnt though that why should we expect people to understand our ms as I certainly don’t understand it!
X
Awww thanks for all your replies so pleased to no im not only 1.
Pigpen im from ipswich am attending my first ms social meet tomorrow, rather nervous but im sure it will be great.
I also try to make it a positive thing and am going to be doing a skydive in july for the society feel like i keep setting myself little challenges of the most exciting things I can do to make the most of everything haha
Very very difficult when you look fine and then i often get people ask how i am so i just say yeah im fine cos i dont want to be that person who goes on about it all the time and if you tell them how you really are then yes i get exactly the same or my mum says well go and lie down then and all i want to say is ok so while i lay there bored who runs the house and looks after the child and goes shopping blah blah blah. Guess this is how i often sit back and think i wish they would leave me alone haha.
Ellie do u find meditation helps ? Have been thinking of trying it x
hiya
definitely-its what sees me thru each day. i am lucky to have been to local monastery several times (understatement!) when able. now i am rarely there and dependent on carer but the basics can be done anywhere, anytime and instant result. i have email/text contact with them if i need support. many ideas on net (wheres dan when hes needed?!)
its worth exploring i think…it assisted me to get of all pain medication! (with knolwledge of my gp-never just stop prescribed medication)
ellie
Sounds brilliant will have a look around and see whats in my area.
Thank you
Jemma x
I’m recently diagnosed and have had all sorts of reactions, from ignoring me (I assume they don’t know what to say) to not allowing me to do anything. I know they are only being nice, but the one that is really getting to me at the moment is people saying how well I look! I was even getting that while I was in hospital grrrr! Also people thinking that now I can walk again, I am better. Sorry that’s the end of my moan for the day.
LOL Ditto. I get that from GP also