Hi, my name is katiecrumbs!

katiecrumbs

I’m 40 , have progressive MS (since 2013) I wasn’t disabled by it until 5 years ago but still continued to work and look as if nothing had changed,
now I can’t work , had to stop my business etc

I don’t feel as though I know who I am any more. I can’t carry on living as I did, I’ve lost friends etc seen true colours worst of all I think I now judge myself

I’ve had time to adjust to it but I’m still not accepting of my condition, I get jealous depressed resentful a lot … everyday people’s lack of understanding, the **** I have to listen to is awful. People telling me I could heal myself and they ‘have I tried exercise’

When they have no idea what Myltiple sclerosis is…. I’m just tired of having to re explain everything to blank faces that seem to think I’m making it all up anyway .. feel lost

Bluebell21

Hi @katiecrumbs Welcome to the Community. When you have a progressive condition that means you are no longer able to lead the life you once did it came be very difficult to adjust yourself never mind having to keep explaining to others what you are going through.

My daughter had a progressive condition not the same as you but it changed her life totally and she lost a lot of her friends who did not understand and were not prepared to find out more about her condition and adjust to accommodate her.

It is so true you find out who your friends are when you need them the most.

She did keep a couple of her old friends but even one of them she felt only came to see her or suggest going somewhere they could both go to when she had nothing else to do.

The only way she came to terms with how her life changed was to look at things she could still do and not look back at what she had before.

Please do not judge yourself, you are doing the best you can and you do not have to explain yourself to anyone.

I hope you find some help and support on the forum and you are able to join in with some of the discussions and chats.

Please take care of yourself.

Santosha12

@katiecrumbs Hi Katie, I'm so sorry you're feeling lost at the moment. I can relate to a lot of what you say, especially not knowing who you are anymore and still not accepting of your condition. I'm mostly housebound, (Long Covid plus myriad of health problems because of that), just me and my dogs and no family, my one friend hundreds of miles away but when we speak every few weeks or so there's usually the comments about just thinking positively with the inference too that I've caused it myself. I'm a bit overwhelmed at the moment so not much use to you I'm sorry but just didn't want to just 'walk on by'. I get it, I really do so please just know you're not alone. This is a very, very good and caring group to be on. Anyway, I'm thinking of you and please look after yourself.

Santosha12

@katiecrumbs I sometimes get a wave of inspiration/think that I can do anything I want to do, that reverts back to nothing very quickly; I was going to join the U3A but couldn't because of health issues that keep me at home all the time. When I'd told my friend the response was 'that's good it's not healthy to be at home all the time just thinking about your health'. No 💩 Sherlock..... I'm not 'just thinking' about them I'm living with the very real effects and consequences of them every day. I feel like I'm living in some kind of Twilight Zone but not really because of poor health but because of the attitudes I've had towards me, its very sad really and very isolating.

katiecrumbs

Thank you all for your kind words and sharing of your own experiences. It’s a very misunderstood and lonely mental place to be in. The stupid suggestions and comments I hear do frustrate me but it shows their lack of understanding. But yes its the attitude they have, where if you don’t listen to or agree with what their saying, than you must want to be ill, and you must enjoy it, and you brought it on yourself.
nobody would say this to someone with cancer?!
It’s tough

Stay strong everyone

luvpink

@katiecrumbs

Hi and a very warm welcome to the community.