Explain, please

Primary progressive MS
1

Am I going mad? Explain please, for years I have been ignored by the MS arena. Now everywhere I look people are trying to get me to be part of this and that related to MS. Forums (this one is special), groups, check over respite centres, have input. I DO NOT want to and it makes me angry, am I going mad? I’d like just to be able to toddle along doing my own thing. I’m bored with my symptoms and most definitely do not want to think about where this beast will lead me. Am I mad?

I’ve not had a rant for I while but I needed this oneM

2

I was diagnosed with PPMS Jan 2011, my symptoms are worse with the lack of mobility. I am awaiting to try out an electric wheelchair for indoors. I get frustrated some days as I can’t do the things I used to. At the moment I am not on medication. Awaiting for letter from my GP to a MS specialist at the Walton Centre, as I am under a Neurologist at the moment not an MS specialist. I will let you know how I get on.

3

No hon you are not going mad… I seem to forever be filling in surveys about MS. It’s non bloody stop. And I just know that my answers to the questions are going to give them the totally wrong idea. They always want you to be ‘involved’.

Eff off I don’t want to be involved… LOL…

People who are not living with long-term health condition do not understand how you mind-set changes when you are ill. They think we are sitting at home wishing we could be attending a ‘social event’.

NOT TRUE. Too tired. Too ill. Want to sit on my recliner and watch the bad Xmas film on Channel 5. (please PLEASE don’t make me attend a social event)!!!

Glad you had a rant hon… I love to rant. Such fun.

Pat x

4

Are you new on here hon? If so, welcome.

Let us know how you get on at Walton Centre. I hear it’s very good there.

You’re with a good crowd here… we all understand.

Take care and see you on here again soon,

Pat x

5

I agree with you M. I am not, most definitely not, a ‘joiner’. I want to be left on my tod to deal with it my way with the people I want to be with. You are not mad. At least, if you are, I am too! Do your own thing, Teresa xx

6

Hi M

Well if you are mad…then so am I, just want to be left alone and

do things my way in my own time.

Pam x

7

Thank you, thank you and thank you again I was starting to think I’d become mean spirited not wanting to join things. You may be the only joining group/gang, I need Take care, be safe M

8

Thank you, thank you and thank you again I was starting to think I’d become mean spirited not wanting to join things. You may be the only joining group/gang, I need Take care, be safe M

9

Hi, do you receive MS Mattters maggie? I was a member of the society way back, when I had MS (does sound weird saying that). I was fed up of getting letters, appeals and bumf from them and other associated groups. They often asked for donations, which i couldnt afford. I gave donations when attending local socials.

luv Pollx