ttfn my friends

Good day to you all.

Tomorrow i go for 6 nights respite at my local hospice. Thisll be my 4th stint, so I guess you could say I like it there!

Just to bring you up to date on the Dr Lily saga. God, its so damned boring! My GP has tried to find out why Lily refused to see me, but shes had no response yet. Why do I bother? Just to get messed around even more. I feel like forgetting the whole dx thing. Perhaps ill never get one. Whatever, eh? Chuff the lot of em.

Dont I sound a maoning minnie? The problems with my daughter and her arrogant two timing husband are weighing heavily on me. Shes still in a state. Life, eh?


back home on 20th.

Play nice now, yeh?

luv Pollxx

U enjoy your pamperin babe, relax & chill!!! spk soon Tracey xx

Have a nice relaxing time Poll!

Will be nice to leave your troubles behind for a few days.

Have you thought of going private to get your diagnosis? Just a thought. Not sure what costs would be involved though.

I got my dx really quickly so must be a text book case i suppose. My heart goes out to anyone in limbo - it must be awful not knowing especially when limbo goes on for soooo long!

Take care and enjoy



Enjoy your break away from it all…just watch what they prescribe eh!!!


Have a lovely rest Polly, I’ll miss your dieting tips but I won’t let us down and be 2 lb lighter by the time you get back. Chis x

Hi Pollx,

You enjoy your break,and have a great time.

We will still be hear when you get back.

As for the rest of your problems,try not to worry about things that you have no control over.[easier said than done i no]

Still find it hard that you have not got a diagnosis yet.[even if it is just to put your mind at rest]

Will not send you a hug as they are painfull[for me anway]so will send you a nice cuddle instead.

Take Care.


Hi Poll

Have a lovely break away from it all, make sure they pamper you.

Pam x

Have a good one Poll. We’ll miss you, as always.

Pat xx

Hello Poll,

Have a nice break away, where you can forget it all for a while. Have a great time, and come back refreshed and fighting fit.

Lots of love,


hi Poll,

Chris is right - it is no good worrying about summat you can do nothing about - Just try to clear your mind and enjoy all the benefits - rest and recuperate.

Did l hear right that your OH has a nice young Philipino looking after him while you are away!!

all the best


[ps didn’t say whether it was male or female]

Have a lovely time, relax and enjoy.

sonia x

Hi Poll, enjoy being looked after and hopefully after a good rest you will be able to deal with your daughters upset better. Take care love Karen xxxx

Hi Poll, Have a lovely break. You will be missed! Sorry to hear that your daughter is still having a hard time. I wish these doctors would stop messing you about. They don’t seem to care very much about the people involved. Enjoy your time away, Teresa xx

Hi Poll,

Enjoy your break, leave your troubles behind and we’ll all behave whilst you’re away.

Take care and sending (((((HUGS)))))



Hello You lovely person,

Hope you enjoy your break. Not been on our MS site for months.It is nice to se you here. God bless you!!


Hi Poll

Hope it goes well and that you have an enjoyable, relaxing time. Plus Graham has a restful time too.

Sorry to hear about your daughters troubles :frowning: I hadn’t realised she was having a hard time and it must be hurting you.

Oh the difficulties you are having with your dx are very upsetting, it simply isn’t fair and I hope you get answers soon.

Love and hugs, Mary

I`m baaaaack!

Well hi there to all my mates and ta lots for all your kind wishes.

Yep! I had a bootiful rest, with craft sessions and pamperings galore!

Jacuzzi baths, power showers, folk washing me in places I`d better not mention!

Aromatherapy massages, chefs asking what i`d like to eat and making wonderful food…yes I hardly wavered from my diet!

Doctors and nurses offering all sorts of pills n potions!

BUT…yeh, Im afraid there is a MASSIVE but`.

The medical Director came to see me a day or so ago.

After asking me how I was and how things are with my dx. I told her the whole sorry saga.

Another doc present at the time, took notes and between us we cobbled a letter together, which has gone to my neuro at halifax hospital… BTW my GP is still trying to get to know why Dr Lily at Leeds, discharged me without seeing me. I have said i`d like to have genetic testing, to see if they can find any naughty genes which belong to HSP. The letter also asked if I could be seen by the neuro in charge at Halifax, when I go for my October appointment there, rather than a registrar.

Now , here comes the big BUT;

The hospice gets a chunk of much needed dosh from the NHS, which they combine with donations and money from 11 local charity shops, to run the hospice. and the NHS have made some changes to the criteria for admitting respite patients.If these changes aren`t implemented, then they will withdraw their dosh.

This means from now on, only folk who need palliative care/end of life nursing, will be admitted for respite.

Luckily, I do not fit the new criteria, but I will miss it so much.

The staff are such wonderful angels, who made mine and Graham`s life so much easier, as the breaks did both of us good.

I have had 4 weeks stay in 2 years, so I appreciate that very much. It was all free and I showed my gratitude in donations of home made quilts, cushions, cards and money…that wasn`t homemade!!

So I left the hospice today in tears and with a lump in my throat. Many of the nurses hugged me and said how much they will miss me.

Sad, innit?

Right what do I do now? well, I dont let the grass grow, as ive applied for funding from my Direct Payments team, to part pay for a hol in Blackers or Southport.

Anyways, here I am, back to add my two pennarth to the forum. Glad to be home.

luv Pollxxxx

Hi Poll, SHOCKING that you won’t be able to do this again! What was it the government said… something like ‘vulnerable people would be protected’… hospices have always offered respite for people with long-term conditions. Very sad that you won’t be able to have a break there again… and it does sound absolutely lovely.

I’m so pleased for you though about the letter. Lets hope it starts the ball rolling toward your dx of ppms!!! which I have always believed, and continue to believe, is what you have! (and anyone who doesn’t know your history might find that an odd thing to say but I do not believe you have HSP and hopefully they can now prove it).

Good luck with the holiday funding… NO you certainly do not let the grass grow!

Welcome back hon… missed you as always,

Pat xxx

Hi teresa, no love, i won`t be giving them my hard come by cash for a dx. I did go private in the beginning and forked out £200…that was in 1999 and I am still in exactly the same position. ie no wiser!

luv Pollx