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PPMS 'ers, an appreciation

After having one of ‘those’ weeks, finding out some of my family aren’t interested in seeing me since my dx, a lot of friends don’t understand what daily pain and fatigue and things feels like and can drag you down and no you don’t have the energy to hop around at night, and they think I’m doing nothing all day.

The point I’m trying to reach is I found out who’s there for me, and I have to say how much I appreciate ALL OF YOU WONDERFUL PEOPLE HERE, you have got me through when my husband is busy and my real friends are working or busy.

So thank you all, just to let you know I appreciate you all helping this girl through what I thought was a critical dx, into knowing it’s just something to deal with. And just like you all I will and I can. I am still getting to understand it all.

Polly xxx

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Hi Polly, I totally understand what you are saying, I get so fed up trying to explain to people that I just don’t have the energy I used to have. It is so nice to come on this forum and know everyone gets it.

ann x

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Hi Polly

Its at times like this when your “real” friends shine, and the others can’t get away quick enough.

I so wish there had been something like this forum yonks ago when I was DX, cos it felt a very lonely place to be, so I am really glad I came across this forum, and like you, so appreciate the lovely friendly people on here.

Wwe are all in the same boat, so everyone truly understands, and being united makes us stronger.

Thanks everyone.

Pam x

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Hello Polly

This forum has been life saver for me. Diagnosed last year, then discharged…no neuro…no ms nurse. Don’t know what I would have done, without this forum. Definitely reduced a lot of the fear

Noreen x

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I agree… this forum is a life-saver.

Polly… you will and you can deal with this.

We can all deal with this because we have each other.

Pat xx

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Thank you everyone, you all mean so much to me, I really wanted you all to know

And yes Pat thanks to here and my hubby and those that have stood by me I promise I will! Pinky promise!

Polly xxx

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Hi Polly,

sorry I’m late!

you’re right, it’s a life saver, like Pam my dx was a long time ago but I felt very alone with my MS until I came on here.

as Pat says, you will cope, somehow we all do, with a lot of help and support from friends here.

Nina x

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BIG HUGS TO ALL OF YOU. I escape on here for a few minutes I know exactly what Polly means and I love you all XXX’ s to each and every one of you. Don

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Hi Polly,

i feel just the same i love this gang.

(((((((((((group hug)))))))))))))

J x

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Polly I agree, this group has been a life saver for me, reassuring me I’m not going mad, helping to pick me up when I need it, and their experience helping with symptom control has been much appreciated. I wouldn’t have copied half as well without them and I’m very grateful to everyone.

Noreen it’s shocking that you were discharged after getting your dx. For me it was the best thing they could have done. Prior to dx I had no help or support despite my having loads of problems, but my first appointment since dx got me introduced to the nicest Neuro, MS nurse and referral to OT and continence nurse. All of a sudden I had a support network with so many people who I can call at any time and they’ll help me with any problems I’m experiencing. Surely you should have the same resources no matter where you live, or an I just extremely fortunate? I hope you’re sorted out now, that’s appalling!

Cath xx

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Me too, folks. So glad I found you all. As you know my wife Ruth gives me all the care and love she can, but I cannot begin to explain to her what the fatigue, the lack of mobility, the nerve pain and the spasms are really like. She obviously sees the results of it all and empathises, but she often feels helpless.(She does understand depression, she’s been there.)

You lovely people do understand what it’s like from the inside. I wouldn’t wish this on anyone, but here we are together. Thank you.

Kev

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Hello Cath

The York trust discharge all MS patients who have PPMS. Only MS patients on DMDs stay on the consultants list but can be re-referred if symptoms change. I did feel angry and scared! I just couldn’t get my head round why you would deny someone newly diagnosd wth MS, access to an MS nurse.

Luckily, I have an excellent gp and a supportive husband and family. I did get help from physio/OT. I wrote to my MP more than once but that was just a waste of time…roll on the election.

This forum really has been a big support for me. I think it’s a place many of us can discuss things, we probably wouldn’t dicuss wth people close to us for fear of upsetting them or just dont want to overburden them…if you understand what I mean.

Noreen x

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Agree with you all! You are a fantasic little bunch and like Don says…I love you all!

i find I don’t often post about the bad stuff, not because I’m lucky enough not to have bad stuff but because I know you all understand and more often than not there is often a post about a similar thing…so I end up knowing what you would all say to me anyway!!

take care, hope you are all having a better Sunday than me…still in bed

Love Nina x

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Aww Nina!

you poor soul, please do tell me your bad stuff too, I’m here for that too, and I’m sure others will echo that sentiment, because just like what Kev said we don’t want to put it all on the people that are there for us in our daily life, so we have virtual family who we can turn to who do understand.

i have a very very close friend called Nina, so it’s written in the stars you’ve got to tell me when your up or down!

I certainly like the fact I can ask my friends here anything if I’m up or down. My Sunday has been okay, and included a very long nap, because it crept up on me and bang, that was it I was asleep,

Let me know if your any better tomo, I hope you are, hugs honey xxx

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hope you feel better very soon Nina

((((((((hugs))))))))

J x

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You are for me the best thing since sliced bread.

I found you early on! Lucky enough to get support and identify with from day 1 of my DX.

Pauline xxxxxx

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Hi Polly - I don’t often post here as others seem to have so much more experience. I feel very lucky to have found this forum and soak up all the information like a sponge. I am lucky that I do not have pain, but my mobility and energy levels are getting worse.

I saw this post (not sure where - may even have been here) it may help explain things to friends. I thought it was very good. I do not know how to make a link but if you go into Google and put in ‘The Spoon theory’ it is the first post that comes up.

I hope you fid it helpful as well.

Jackie xx

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Hi Jackie,

thank you for that I really appreciate it, it is very helpful. I just have a very complicated family, but I am very fortunate to have a fabulous hubby and great kids. They have read it as well.

thank you for your kind words

Polly xxx

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