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Why bother?

I was diagnosed over 5 years ago with Primary Progressive Multiple Sclerosis & because I’m the only person with PPMS who goes to the local MS group. The carers & helpers who attend the group, recon I don’t have MS. They’ve even been asking my MS nurse questions about me & constantly enquiring about PiP & medications. I’ll be ditching the group from now. Who needs that kind of stress? I’m sorry I don’t have RRMS or SPMS & fit in to the general category.

I know I have PPMS & I’ve had to go to a tribunal twice for the PiP scheme. I take no medication, because there is none. I have been getting progressively worse. Yes, I had to give up my driving licence, but I got it back, after resitting my driving test with two advanced instructors. Yes, it caused me to lose my job & everything else. Why bother?

There’s groups of strange people out there, who are jealous & not happy about anything. They need to get lost & leave people with problems alone, because they cause even greater problems.

Fare the well. Avoid the idiots of this world. They will drag you down.

Terry is having a coffee & playing chess.

Hello Terry.

I know exactly what you mean. You’ve seen my blogs!

As long as I’m financially stable, everyone else can run and jump. I have my friends. My local MS group are well-meaning but like you, there’s a lack of understanding. The first question is often about my medication. I’m on zilch. Then doesn’t the advice come flooding in. No thanks. I’m sitting here, listening to Glamorgan vs Lancashire thinking about a suasage casserole.

Stay grooving Tez.

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You’re making me hungry now Steve. The people only interested in finances & medication, are not people to be around.

All my camper van gear is getting washed, after a week of abuse in Cornwall by a family of seven. Now it’s had the all clear, it’s my turn. The false folks can see me disappear over the horizon. I’ll take my PPMS else where & call in to a few shops for pasties & stuff.

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If you feel like making your own pasties; I use these little devils:

https://www.amazon.co.uk/gp/product/B00429QI92/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1

Steve

You could catch bears in those, too. Cheers Steve.

In a way i blame it on MS Society. we are all different yet i know MSERS who have never heard of PPMS. they are the ELITE with their RRMS we are just black sheep cousins or something lol. I was told ah well you are not that bad you dont get relapses and have to stay in bed all day blah blah. I could stay in bed all day but i choose not too. My neuro treats me differently with my PPMS he admires me, and said i was dealing with it all exceptionally well and was asking me how i do it. He said its great that i do my own form of mindfulness, do i watch my diet if so what do i do? would i benefit he said from cbd oil if they can push it to go on prescription (if they can get enough feedback about it), i said i have no idea as you know i take nothing. PPMS is different from RRMS. I actually said that to him. i find all those i know with RRMS seem to have more issues from waist up and i have from waist down lol. we are a rare breed, but a fighting breed.

Well I was thinking about going to a local group meeting but if that’s how they are I won’t bother, I’m already down enough with this recent Ppms diagnosis.

Muffin,

Don’t let Terry’s experience put you off. There are a lot of friendly, inclusive groups out there.

My local bunch meet up once a month in a local pub for a general chat and then we join in the quiz. We’ve even won!

Anthony

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hiya muffin

i agree with anthony-dont let anothers experience possibly deny you something that u would find invaluable.

my ms group has 4 meetings in a month so we can choose the most suitable for us. posher lunch, pub lunch, evening meal and… actually the 4th one doesnt run anymore but it was men only.

we are all flavours of ms and though ms does get discussed theres also an abundance of other topics in life that get aired too.

take care, ellie

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The MS group is fine. Like the saying goes, it only takes a rotten apple. I pay £5 to get in to the group event & it’s not a tribunal. I get on with most, but don’t go to feel uncomfortable or stressed. PPMS is a nightmare! The hot weather hasn’t helped anyone I know.

The MS groups are great for getting out & about. They have trips & events.

My personal issue is, I seem okay & do way more than most. I’ve made some good friends from the MS group. Some folks are just ignorant & speak before thinking. Others are set in their ways & experts of an uncontrollable problem. How long is the piece of string?

Terry

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MS groups are not the problem. They are a solution. I was falling all over the place in a bad way, the other week. My neighbour who knows I have MS, was joking I had been the pub. When I replied not today, he slammed his door. My obvious problem wasn’t clear enough. Some people just like to add to others problems.

I highly recommend going to MS groups & being around others, with similar issues.

Yobs are everywhere unfortunately.

I avoid MS groups the only ones I’ve seen are full of really not very well people! It takes me all my time to keep me on the up, I see other MSers at my annual Consultant appointment. Selfish or what, sorry guys. Be safe and take care, M x

Do what feels right for you M. All the best out there. A lot of people with MS have different problems. It’s not a competition.

Some folks just have bad days & lash out. I’m learning who to avoid.

Regards Terry

I go to my local group every week we rarely talk about MS unless someone has a question or something new is happening to one of us. We have a lady comes in to give massage or Reiki if any of us want any treatment. We chat have tea/coffee and biscuits one of us might take cakes or doughnuts in as a treat, we have a quiz and every so often we go out for a meal. It’s nice and friendly, I enjoy going.

Jan x

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Any type of Group get together is good for all. If it’s enjoyed then keep making friends. If it’s all moaning old people dwelling on their own bad luck, with no support for you, then no-one forces you to attend. You’re free to find another group or Group activity or voluntary work if suited. As long as one finds something enjoyable to look forward to, regardless of one’s health prognosis. Even terminally ill with perhaps 2years to live, can look forward to tomorrow’s crossword, sudoku, jigsaw, or our Forum. To Terry; your decision to leave your group shows your own strength of character and leaves you free to do what YOU will benefit from. See this as a positive result instead of constantly dwelling on your bad experieces. They’re in the past, you’ve survived yet seem under such a dark cloud. This is depression and loneliness making you feel so bitter against the world. Remember, even if you sleep in the gutters, there’s stars to look at and a beautiful dawn to look forward to. Maybe explain your feelings to your MS Nurse - he or she are NOT a waste of time, they have evidence of your condition. If it was as bad as you seem to believe, you would not be allowed to drive. Again you show strength and get a driving assessment to reinstate the licence to drive. A perfect positive result for you. PPMS is very very rarely confirmed but we’re cheering the new Ocrevus drug is now approved by NICE. So far it has proven good enough to slow down progression unless there’s already too much permanent damage. Terry, I suppose I’m trying to make a short point via the longest route to cheer you up, stop putting everyone down, accept the world isn’t perfect and accept it’s good you’re now free to drive. That alone is worth celebrating. Cheer up Terry, it’s only 1 phone call to your nurse & you’ll have got the 1st step to feeling grateful for what you do have. Then carry on taking steps to beat this depression you’re currently in. It’d be great to one day read your topic about a good day and why without adding self pity about robbers, thieves and liars etc. You’ve already shown your strength to carry on, So you CAN do this & disperse the black cloud. Harsh words from me written with your best interests at heart. Only you can get out of your current moods but you are well enough and strong enough to do it. O.K! Chrissie x