hayles 15/01/18
Last reply 3 months ago
Getting worse

Hey guys, I’m hayles, I’m new here but I really need to know if there’s anyone out there like me as I’ve yet to meet somebody that is. I have PPMS & I cannot walk or use my left arm/hand any longer & those with PPMS I know of are still walking & able to do most things without help where I can’t even get out of a noisy hospital bed. I have to stay here constantly with only the TV to keep me company. I used to think I had a lot of “friends” but that was until they knew I was sick then I lost them all but one whom comes to see me regularly. She’s so sweet, a true friend. I’m not feeling sorry for myself I just need to know if there is anyone similar to me? ie going through the same crap.

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laura45
3 months ago

Hi Hayles
Yes I have PPMS and I understand what you are going through! I exercise when able and stay away from people and situations that will upset me. People don’t get MS. If you have one good friend cherish her!


affibelle
3 months ago

Hi Hayles,
I have SPMS and up until recently have been active. I’ve left my job due to my MS and I too thought I had many friends but you very soon find out (as my mum used to tell me) “they’re not your friends they’re your acquaintances”!
I’ve learnt quickly that my one true friend is with me all the way, whatever the weather. I try to do things for her like order little things from Amazon that I know she’d like or I recently got some special coffee in my grocery order, just so she knows that I am grateful and appreciate our time together.
Texts are great as sometimes if I’m watching TV I might text about a programme to find she’s watching the same thing and a conversation ensues.
It’s difficult but try not to get too sad about the other friends as the time you spend with your “one true friend” is strengthening your bond and you are finding out more about each other. True mindfulness at work😃 Thinking of youX


hayles
3 months ago

Thanks so much affibelle xx


hayles
3 months ago

I most certainly do laura45, wouldn’t be without her. I can’t exercise anymore. I woke up one day a year ago & my legs couldn’t hold me up anymore. Back before then I used to exercise but now as last year I lost use of my left arm/hand I can’t.


marydev
3 months ago

Hi
I completely understand you i to have ppms diagnosed 6 yearscago at 44.
Since September I have had to finish work ,lost my driving licence and this week had to have a pubic cather put in most of my symptoms are invisible each day bringing some thing new .the hardest thing is seeing every body else’s life carry on and people you once thought where friends distances them self for you.it hurts there’s no doubt about it thank God for this site and others like it. I am not going to say it will get easier but you will find ways of getting through the bad days
Take care of your self
Marydev


hayles
3 months ago

Hey marydev, at last I’ve found someone who gets me. It’s so good to know there is a person just like me. Finally I’m not alone. Thank you so much. xx


mermaidia11
3 months ago

Me too ladies !
We ain’t alone
God bless n good luck
Remember, u can’t beat someone who ho won’t give up(even if the bod does)


hayles
3 months ago

Thanks mermaidia11 ☺

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