Last reply 1 month ago
Newbie here!!

Hello I’ve been recently diagnosed, I’m still getting my head round it, fed up with the chronic pain, I’m working mum with two kids. My MS Nurse is coming to see me next week. I feel like people that don’t have MS don’t really get it. If I say I’m tired they say oh I am too, erm it’s not the same!!

It’s been kind of a relief to be diagnosed but then it’s the uncertainty as well. Just a rollercoaster really.I’ve been on the keto diet as some foods were causing me inflammation but fell of the wagon last few days feel worse for it hope your all ok xx

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melmel1
1 month ago

@supermum1983 hey and welcome,I know how you feel I am going through the roller coster myself, and totally get what you mean when people go oh yeah I’m tired to 🙄 Lol, I have knowticed certain foods make me worst like spicey things, how r u doing doing x


peterfrancis
1 month ago

@supermum1983

Hi and welcome to the site.

You’re so right when you say that people without MS don’t understand it at all, even the Nurse and Doctors don’t fully get it in my opinion and experience. Sure they have the knowledge and the Degrees, etc but the one thing they lack is the experience of living with it.


edmontonalberta
1 month ago

@supermum1983

99.9% of people do not care about you / I / anybody else but themselves. Doesn’t make them good or bad people for that – it is just a fact of life… For example, when you explain how you feel, they either try to “one up” your story, ignore it, deflect it or then move out of your life.

My first wife (may she RIP) showed me to never bring up her illness in conversation – when someone does, only share what is important to function on Planet Earth. For example, when we go out – my friends know I need the seat closest to a washroom “just in case”. They know that if I have to go home early, that it has nothing to do with them; I actually enjoy their company.

Yes you are correct that people without MS “don’t really get it”. But at the same time, we really don’t know exactly what everyone else is going through. Hope this helps…


supermum1983
1 month ago

@melmel1 I felt really rough today but feeling better now had a good soak ready for bed. How are you doing. I love spicy foods I found bread chips and certain foods make me tingle x


supermum1983
1 month ago

@peterfrancis your so right even the neurologist was so really vauge and not supportive at all. Yeah I feel only people that are going though the symptoms understand. even if I stand up to fast I feel dizzy sometimes all these little things impact my day.


maz1
1 month ago

Ms=You don’t get it till you get it.


supermum1983
1 month ago

@edmontonalberta I get your point but Some people do lack compassion. I was even thinking about not telling people because I didn’t want people to treat me with glass. But yeah it’s intresting


melmel1
1 month ago

@supermum1983 yes bread too I’m weary of,I’m tired and dizzy lol glad your feeling better x


maz1
1 month ago

Stay strong and keep smiling


supermum1983
1 month ago

@maz1 you 2, your right until your on the other side of the fence. It’s no comprende lol

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