I have attached myself to a couple of threads and have received some fab messages from you guys. Thank you.
The recommendation was to start a new thread and introduce myself properly. So here goes.
I am Paul - known to my friends as flopsy. (long story!!)
I am 42 - I work full time - have been diagnosed with PPMS since 2011 . . signs have been there since 2008 ish. I was very active, played sport to a decent standard…now walking to shop is tough. Have put an end to long term relationship because of illness (and minor other things).
My left hand side is predominantly effected,especially leg . .although arm is obviously weakening to me. I still try and stay mobile and live as normal life as possible. . . as with you guys, good days and bad days.
I have two flaws regarding my illness . . .1) I dont tell people about it 2) I joke about it with people who do know.
I apologise if I do joke about things too much and I look forward to virtually meeting you all.
Nice one for explaining it in full. I know it takes alot but you do feel a darn sight better when you do. I’m like you in regards to joking. But I’d rather that because other people will want to be sympathetic. And I want to save that for when I want something. Just kidding I do however think humour helps alot in the long term. So now you’ve told your story. Stick to your guns and try to stay positive. I know there are dark days. But they’ll end
Flopsy I’m glad you put your introduction up. It’s nice to know a bit about those you write to. There’s a really nice group of people on here who’ve all had different experiences and they can give a lot of support through the ups and downs this stupid condition throws our way. I know I’m in a much better place thanks to the people on here. If you have any questions there’s always someone who can help. Take care
Haha I know how you feel. When I got diagnosed it was closure after just under two years of investigating. When everyone in my family found out it was like I’d been sentenced to death. Luckily they’re starting to go the humour route now. So I feel your pain!
Hey Paul, Great to meet you. This is a great place to talk to people who understand where you’re coming from. People are so good at listening to each other too and if you want to rant and rave, feel free! A lot of us make a joke of our illness to others. It’s a coping mechanism isn’t it? However, it’s no joke in reality, is it? Hope you will feel like coming back for support! Teresa xx
Hi Paul, so weird I’m sure I answered this yesterday but it’s not on here! Anyway here I am saying hi again… glad you found us. It makes the world of difference coming on here where you can talk about absolutely anything and know there are folk here who really understand. A big welcome to our little gang… we may be small but you know what they say, the smaller the package the better the gift. Pat xx
Just run across this thread and saw your comment about you dont tell anyone. Can I ask what your reasons are as I wonder if there the same as mine, which are.
!/ People dont understand what MS is ( I didnt before I got it )and think its like ME which theyve heard called yuppy flu and the chances are your probably just faking it to claim benefits
2/People that do know what it is would realise its a permanent illness and whilst being sympathetic would’nt want to get involved and distance themselves.
3/I would be discriminated against in all manner of ways,not directly of course because that would look nasty but other reasons found.
4/ It could be actively used against me for someone elses benefit
5/Fear of being attacked .
6/ Fear of being written off immediatly by the opposite sex. ( links in with 2,3,4 and 5)
Some dark stuff in there but after losing some very long term friends after I was diagnosed through them suddenly distacing themselves,I realised that human nature can be very shitty when it wants and when it doesnt understand or finds it too difficult to understand.
So its yeh recovering from a back operation is why Im limping. Implication being, I’ll be back fighting fit soon , so move on nothing to see here.
Hi NW 1 I think I don’t want to tell everyone as I don’t want to be thought of as different (decrepit) or to have them feeling sorry for me. People I’m close to or I see regularly know but acquaintances or people I went to school with (all in South Africa so I’m unlikely to bump into them) needn’t know. I’ve accepted my situation and am happier than I ever imagined I’d be, especially considering my limitations. I don’t want or need pity, life’s good.
Thank you for welcome messages - very much appreciated.
NW1 - The reason I do not tell people are simple to me, athough not accepted by non sufferers who do know.
1 - Selfishness/Pride: This is my illness and I want to manage it my way . . in my eyes, my friends cannot do anything or even understand it . . the last thing I want is that wretched head tilt they give you and then treat you like you cannot do anything.
2 - Boredom: I am tired of talking about it - I have to think about it 24/7 . .I dont want to explain it to people.
3 - A mxture of all the reasons you mentioned.
4 - Normal: At the moment, I can still walk (oddly, but its a walk!!), I can still see, and I am living a normal life of sorts. I want to cling onto this.
I explain my drop foot/funny walk on a ‘gammy knee’ which was caused by playing too much sport . . .I cannot be bothered to explan my tiredness and irritable nature to non sufferers !!!
Thank you for welcome messages - very much appreciated.
NW1 - The reason I do not tell people are simple to me, athough not accepted by non sufferers who do know.
1 - Selfishness/Pride: This is my illness and I want to manage it my way . . in my eyes, my friends cannot do anything or even understand it . . the last thing I want is that wretched head tilt they give you and then treat you like you cannot do anything.
2 - Boredom: I am tired of talking about it - I have to think about it 24/7 . .I dont want to explain it to people.
3 - A mxture of all the reasons you mentioned.
4 - Normal: At the moment, I can still walk (oddly, but its a walk!!), I can still see, and I am living a normal life of sorts. I want to cling onto this.
I explain my drop foot/funny walk on a ‘gammy knee’ which was caused by playing too much sport . . .I cannot be bothered to explan my tiredness and irritable nature to non sufferers !!!
Nice to meet you I have only been on here a little while, although I am very open about my MS, especially to the guy who came up to me in the street to tell me I was to young for a shopping trolly
Nice to meet you I have only been on here a little while, although I am very open about my MS, especially to the guy who came up to me in the street to tell me I was to young for a shopping trolly
Ruth there’s nothing wrong with a shopping trolley. I love mine, it’s the difference between buying my milk at Tesco cheaply and shoving it in that while I have my little walkabout, or driving to the corner shop on my way home and paying nearly double for it. The rate we go through milk every week means a huge saving, which when you’re forced to live on benefits, is quite significant. Don’t let anyone who looks down their noses at you cause you any stress. Look at it as an aid to independence.
Just wanted to say hi and welcome. I know I don’t post on here often but I am always around.
Just wanted to say well done for contacting us. We are a friendly bunch. I often, in the past, have had quick and good advice on here before the Dr. has told me the same thing!
Everyone’s journey is differentg with MS and we all have to find out own way of dealing with it. I like you,m don’t like telling people, although I do. I would rather they knew I had a problem rather than they think I am drunk!
It certainly is not the end of life, it is just a different path than we would have chosen for ourselves. My life is great even though I have lots of problems.
Hi Paul it is Panto season so doc says to patient you have got MS patiant replies OH no I havent. Heeee heeee and welcome to the board. We all deal with this crap in our own way. I to am a joker but I cry at soppy Christmas movies and now I have discovered I can even cry at adverts and the news. MS messes with us so joking is a coping mechignism (have I spelled that right) you are right no one else will know what we are going through and I am so so lucky my wife of 35 years is my career and without her I would never survive. Have a great new year and I wish you all the best for 2014. Don aka hoppity
Hi Paul good to see you on here, i only joined the Boards a few days ago, mainly to chat to other people who have MS although im still fighting my GP to send me to a Nuro, i know how you feel about people backing off as my friends have got fed up of me saying how im feeling…so now i suffer in silence. Until now all the guys here who have been talking to me have been great i appreshiate the comments. Take care
I do however think humour helps alot in the long term. So now you’ve told your story. Stick to your guns and try to stay positive. I know there are dark days. But they’ll end 