@TjBaba80

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TjBaba80

Taken seriously

Hi all I hope you are all well, I wanted to ask if anyone felt or feels that they aren't being taken seriously especially if your diagnosis is Remittance Relapse. I feel like Im not being taken seriously. I am a performing artist and physical theatre is...was one of my major mediums of performing. I can't even manoeuvre myself out of bed best of days due to muscle weakness, I can't put my socks or lace my shoes most days, and I m being made feel Im making it up especially by my MS nurse. I had to send her a long email today, but i have been vexed the whole day. Now that lockdown is slowly easing here in England. Theatres are to open soon and i have been getting availability checks etc. I'm so anxious that I won't be able to function as I could before my symptoms started. I was even told I don't have a disability....I know I should be grateful that Im alive, this is all new to me and has changed everything...Im sorry my words are not as coherent as id like them to be, but I needed to vent to people that would understand. Thank you for reading, I hope i get my physical ability back...I really do..

Luv_Ma_Name

@Luv_Ma_Name

Really hope that writing this made you feel a little bit better. I walk (😂) out of the appointments with the ms nurse/consultant in tears almost all the time because I feel like I'm not being taken seriously. But I have realised I am just reporting to them what's going on with me and they are only keeping notes. I've been wanting them to say "don't worry" or "it will all be ok" but they don't cause they can't! And thinking, why are you not keeping up with me? Why are you always behind instead of Infront?! I guess things will be a little worse now, stress wise, because you will be wanting to move forward and make decisions as the world opens up again. My way of thinking about my situation is MS first, me second, specialist third, that is my running order of things. I don't think they aren't taking you seriously I just think they can give you false hopes or any promises. I really hope you will be able to get back to work, maybe with some changes. Sorry for the rant and best wishes x

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Luv_Ma_Name

@Luv_Ma_Name

Can't*

TjBaba80

@TjBaba80

Thank you @Luv_Ma_Name, Reading what you wrote makes sense, Thank you..

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Vickyms

@Vickyms

I agree with a lot of what @Luv_Ma_Name has written but I would also say that if you feel that your consultant doesn't take you seriously you should see about changing. My diagnosing consultant was very old-fashioned so I asked my GP to refer me somewhere else which he happily did, and things improved greatly. Still have to see same MS nurse though!

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