CP we understood and knew you weren’t trying to upset anyone. We have one of those frustrating illnesses that aren’t easily explained and because our symptoms are so wide ranging and variable even we forget from day to day what bits of us do and don’t work. We’re very fortunate to have somewhere we can rant to a friendly and supportive group of people who might be strangers but understand us better than our closest friends and family. Rant away pal.
Cath xx
CP… you rant all you want. We all understand and know that you didn’t mean to offend anyone. We all know how frustrating it can get. We are all here for you. Lots of love, Pat xx
I always feel guilty when i come on this PPMS board as a person with RRMS.
I have always been assured by others that i was welcome here. I have made friends here.
I was really upset by this post - so much so - that it reduced me to tears.
I do not understand what it is like to have PPMS as i don’t have it, but i can try to understand and empathise. I would like to think people with PPMS might do the same towards people with RRMS.
I am not running marathons CP - in fact - i have been pretty much housebound now for 3 years! I am really unwell at the moment.
I have had ON twice now and it is not something to make light of. I lost my sight both times for several weeks and it was the scariest time in my whole life.
The reason i came on this part of the board was to chat to Pat/Tree65/skippysprite/boudica who have made me feel very welcome. So thankyou to them.
Teresa. x
Hi Teresa,
CP has no intention of offending others who have RRMS. It is just the non-ms people can be so insensitive when seeing the obvious decline that people with PPMS tend to have. GP is getting fed up with people on the street expecting him to bounce back - just like a neighbour of theirs, who get injections for their MS. Equally, I know someone with RRMS who is very bad and people expect her to jump back (like others) - she gets frustrated when compared to others with the same disease - ie feeling “I am a failure as I cant cope as well as the others”.
I hope that I have explained myself. I dont even have a dx of PPMS but whatever I have seems similar in many ways which is why I come on this site.
We dont want you to disappear from this forum as we value your contribution.
Take Care
Moyna xxx
Treek
The ONLY place in the world, it seems, where people understand and know about PPMS is this online forum.
Whilst I take your point that my post might have been a bit ostracising, please recognise how profoundly annoying, depressing even, it is for PPMS folk to hear tale after tale about other people with MS being ‘fine’. And also consider how, as a sporty bloke in his early 40s, former PE teacher, with two young children reliant on me driving and doing stuff, I get extremely sad&weepy about not being able to do lots of physical stuff anymore.
So reading posts about MS folk being ‘fine’ and doing lots of running just makes me…you get the drift; red rag to a bull, etc.
We’re all human. Please stay around, as I’ve always lived by ‘the more the merrier’ maxim.
CP
I understand what you are saying Moyna but it is not just PPMS sufferers that have to tolerate ‘ignorance from people on the street’. It happens to ALL people with ms!
My aunty is constantly asking me “when are you going back to work?” because she knows people who are less affected.
There does not seem to be just ‘ignorance on the street’ but there seems to be ignorance from fellow ms suffers also.
I am very saddened by this as i would like to think ALL ms’ers stand together united to support eachother regarless as to how severe or mild their ms is.
Teresa. x
I understand your frustration CP as i am a mother of 2 who can not keep up at all at the moment and i hate myself for it.
Your post just made me feel even more of a failure.
Take care
Teresa.x
Hi Teresa
One thing you definitely are not, is a failure, so please dont ever think that, you have a horrible debilitating illness that you did nnot chooose to have, and like all of us, you are doing the best you can.
Everyone has their own opinion, and they always know someone who has ms and who is doing just fine. I think we have all been there, and it 7s the last thing we want to hear, especially when things are not so good. I know I for one has gone home and had a good cry, but deep down I know they dont realise how upsetting their words are.
My opinion is still the same as I mentioned above, I (sort of) understand my ms(although it still bites me unexpectedly) but I dont know how I would cope with not knowing when, or if, a relapse would happen. At the end of the day, we all have a horrible illness that has entered our life without invitation, and all of us are doing our very best, not just for ourselves, but our family as well.
Please still visit our forum, everyone is most welcome.
Pam x
Teresa I’m sorry too if I’ve upset you. Like the others I’ve been reduced to tears feeling like a fraud or failure as people I know also expect me to miraculously get better for a few years like … does. I also find it really hard to cope with when I hear about these drugs for ms mentioned in the newspapers or news and my family call and get excited thinking my symptoms can be healed and I have to explain why my Neuro won’t let me have them.
I have nothing against people with rrms personally, like Pat I don’t know if I’d like to know I have an illness that could suddenly flare up and knock me down at any time but feel saddened at times by the insensitivity some have with minor symptoms like CP’s marathon runner when so many of us no matter what type of ms we have are unable to walk never mind run marathons.
Please don’t feel that anyone is “getting at” you. All any of us want is that people are sensitive to the suffering of others. I have a lovely friend with rrms and would never say that I’m worse off than her, we both have a lot in common in some ways but are poles apart with others, she gets DMD’s and I don’t hold that against her either, we support each other. It’s true that on this forum we try hard to support and help each other, no matter what illness you have, neurological disorders being so similar. I hope you continue to visit us here but you have to allow us to rant now and again. CP never pointed a finger at a type of ms but the insensitivity of some people.
I would hope you’d accept it as a rant, we’ve all had a negative reaction to attitudes or aspects of this frustrating illness and ranting on here causes less problems than ranting at friends and family. That’s why we encourage it and let them know they’re not alone with their frustrations. Take care.
Cath xx
Wise words Cath
CP
X
Teresa,
I truly hope you know you’re welcome here and I truly hope my comments haven’t upset you hun.
I think Moyna hit’s the nail on the head, I have nothing but empathy for anyone with MS whatever type but “It is just the non-ms people can be so insensitive when seeing the obvious decline that people with PPMS tend to have”
I hope you know you’re welcome, I remember you from when I joined the forum and like you being here
Sonia x
Hi Teresa, I am very sorry to read how CPs post has left yoin ears.
Some folk responded to him in a way that he has a right to vent…as we all do…yeh he does, but I think his choice of words was a bit harsh.
However he has apologised for causing any upset, so have let it go.
You have always been a great support to me hun…thankyou for that.
luv pollx
hi, hope you feel better after your rant CP. it does help sometimes to let rip.
As a former PPMSer, after being wrongly dxd for years, Ive been told by many folk here, that I am still welcome here and I do feel and appreciate that welcome.
You know in those days of mis-dx, I used to wonder if it was better to have PPMS than RRMS, as i always knew I`d never have any rest from the way my condition affected me.
And it`s much the same now with this half dx of spastic paraparesis.
Like you, Ive lost so much of my former life. I had a job I loved and couldve risen more in.
For years now, i`ve had to rely on the help of others with stuff from peeing, pooing, going out, coming in and all sorts of activities.
Its difficult life, but one I treasure as much as ever, cos too many folk Ive known aren`t here now to share it with me.
luv Pollx
Lots of shovels been used I see and rightly so!
Rant away CP we’ve all had that feeling, this is the best place to let it go amongst those that know.
Manoon I find your comments a lot more insulting and unfeeling than any of the other posts here. Nobody meant any ill feelings but your comments upset me. We have the right to rant, we have made it clear that fingers weren’t pointed and apologized for any upset we may have caused with our responses. Your last comment was quite unnecessary and I find it very insulting.
Sorry to anyone else who may disagree with this but we’re entitled to comment without being riled.
Cath
Thank you Cath for saying exactly what I was thinking and just about to write!
Thank you Cath, Well put! Manoon, I’m loathe to sink to your level but honestly I think you are the one that’s becoming boring. It’s a great shame we would all have been as happy to support you as we do all new comers. It’s a tough time your going through but we are a close knit group and you really can’t expect us not to support our friends. Nina
I think this thread has got too personal now.
I didn’t want to cause people to fall out by my comments. I’m sure CP didn’t want this either when he had his rant!
We have to agree to disagree.
I hope this will be the last post on this thread so the mods don’t have to close it down.
Best wishes to everyone
Teresa.x
yep, couldnt agree more, Teresa.
pollx