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Jennaxoxox

How do people manage?

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Jennaxoxox

I am newly diagnosed with ms was diagnosed in November. When diagnosed the only symptoms I had were feelings ( numbness, burning, itching, spiders crawling onme ) But now I have tremors :-/ I am really not happy about these at all. They make me rock like one of those mentally ill people from girl interrupted and my hands shake dreadfully. Some days worse than others but it nearly always happens and the more I try to stop it the worse it gets.

 

How do people manage when their symptoms become more visual? I'm extremely vain and can't stand the thought of people noticing there is something clearly wrong. :-( I literally do nothing to draw attention to myself ever and can't stand people noticing me at the best of times. I'm not shy I'm very confident just extremely vain. Don't get me wrong I don't for a second think I'm anything special and certainly don't have my head up my own arse it's just I like to look normal and am really struggling with the thought that I would appear anything other than that. People notice I'm dropping things and my hands shake dreadfully, especially lighting a cigarette or trying to text someone.

 

The whole thing that bothers me is having the disabled ticket. I don't want people to know I don't work properly and in this short space of time it's becoming a not so much invisible ilness for me and it's literally making me turn grey by the second!

 

What do you's do? How do you cope with the not so invisible parts of this?

 

Sorry for ranting and appearing to be completely stuck up and like one of those barbie dolls that flick their hair every 2seconds, i swear I'm not I just don't know how else to explain it :-/

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Nick

First,

don't feel sorry for ranting on, everyone here knows its good to rant! You are correct in being concerned about having a 'disabled label' stuck around your neck, nobody wants that! Your position is exactly how many of us felt during the agonising period of 'being diagnosed' Being diagnosed with MS simply means that a cause has been found for your difficulties. What it does not tell you is anything much about your particular MS, nor does it tell you anything about how you can come to understand your own MS and how to come to terms with things. This often has the effect of making things worse, a kind of repeditive downward circle, not a good thing. Just your coming here on the forum and explaining your problems is a very good thing, it will help you get past this phase and allow you to be yourself again. Your last sentence says 'I don't know how to explain it' This is so true! Its a very difficult thing to put into words.

 

Best from Nick

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Just another Warrior...........

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Skippysprite

Hi

 

Welcome to the forum, and please don't apologise for needing a rant, it is allowed, and hopefully by talking about it will help, I know it does me.

 

I understand completely what your feeling about having a tremor, this is the one symptom that really embarrasses me, which to some may sound silly, as I use a powerchair to get around! But the tremor, that is just something that really bothers me.

 

My ms nurse suggested propanalol, which I have been taking for a few years, and whilst it does not stop it completely, it does seem to help somewhat. I don't know if you want to take medication, but it may be worth having a word with your neuro, ms nurse or GP to see what they suggest.

 

Wishing you all the best, take care.

 

Pam x

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Live for today.......never have regrets

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