honeybug

Ohhh sooo sorry Lupi

😊🌸🌿🦋

about your NO for PIP. I hope you can put your strategy together with your friend’s and regroup for tribunal.

My guess is that the McD patty was a comfort food reaction. Not TMI for me. Sooo sorry about the up chuck lost your cookies are less graffic ways we describe having tummy evacuations 🤮 here in the USA 🇺🇸.

I hope you get to feeling better soon sweetie.

Gentle gentle hugs 🤗 xxx

😊🌸🌿🦋🙏🤗💗😘

Hidden

Oh hell’s bells. Well having failed on both counts with PIP I have to say that it took me on a steep learning curve. Basically as I’m sure you know - it’s extra important that you refer only back to your assessment not to any new symptoms or diagnosis.

And as there are clear iniquities and discrepancies you and your friend have observed - this should in theory be enough. But of course it’s your and friends word against the civil servant’s. Have you consulted your CAB or welfare rights legal team yet? I did this but only the day before the tribunal and they couldn’t accompany me because of postcode issues.

I do think I tried to put my case as well as I could. And I know the assessor played me something rotten and I foolishly let her so it was too hard to come back from this later at the tribunal.

But at the end of the day the online info about Sjögren’s always only says it’s an autoimmune disease that mainly attacks the moisture production in the eyes and mouth - no mention of the systemic complexity, risk of organ involvement, the lack of targeted systemic treatments, autonomic dysfunction, severe constipation or Gastroparesis, dysphasia, disguesia, severity of fatigue or small fibre neuropathy.

The only really good online info comes from the Sjögren’s Syndrome Foundation and John Hopkins which are both American institutions so they wouldn’t have read this I’m sure.

And therein lies my own personal learning curve. I need to be much more frank and less proud at my initial assessment than I was last year. If I do go for it again I will focus on my frequent falls - using the latest A&E report, functional overlay (who cares if they want to call it “functional”? - after all people with ME and Fibro sometimes get awarded PIP) - intolerance of all immune suppression so untreated systemically, severe degenerative disc disease with herniated discs all now on copies of reports. I will really explain how badly fatigue impacts on my every day life and this time I will ask my GP, physio and OT to write letters supporting this.

Last time I thought honestly would get me there but I failed to truly grasp that it’s such an unlevel playing field to begin with that it’s hopeless being proud of my efforts to overcome the obstacles in my way. As my counsellor pointed out this wasn’t honesty on my part at all it was being in denial. It’s so counter intuitive and one needs to spell out the everyday humiliations and unpredictability etc rather than briefly refer to them blushing with embarrassment.

I mean let’s face it whoever thinks the day will come where fecal incontinence and related vaginal e-Coli will be something to flag up proudly and state the impact of to a total non medically trained stranger?!

I’m also more focussed on the need for awareness raising about the full gamut of problems Sjögren’s can cause and getting my doctors to spell the same things out in their clinical letters as they say in my appointments. Rather than hedging and oblique references to stuff I had for the assessor last time.

Keyboard - they tried that on me too and I was too stupid for words about it. What I should have explained is that my finger tips are permanently semi numb now so I often rely on the voice recognition software but if I’m hoarse I have to edit ten times over (entirely true - I started this reply hours ago!) so everything takes such a huge effort - which of course adds to the overwhelming fatigue and photosensitivity issues caused by Sjögren’s dry eyes.

Its all about emphasising the impact impact impact (and that that includes bowels lol!). Rather like a lawyer advises a client to stick to the “no comment” thing. My sisters and brother in laws all get various levels of PIP for their born deafness. And one sister who gets the maximum explained that she didn’t say anything extraneous at all because she had an interpreter and finds syntax and grammar very hard at the best of times. She didn’t hear the silences so didn’t feel the need to qualify her short answers as I always do.

So she advised me that you just need to stick to the script as minimally and clearly as you possibly can - not try and please anyone as I’m inclined to - just facts and the more degrading and humiliating the facts are the better. She came out of her assessment and wept on her husband’s shoulder for over an hour afterwards poor love. Such a sad old world we live in that forces us into this rotten and degrading pigeon hole. Sorry for the rant but it makes me so disgusted at the way the system bullies us into submission. There is no real kindness out there in the ranks of those who are handsomely paid sit in judgement I feel.

But I think you’ll be okay LK because truth is on your side - but it’s well worth enlisting welfare rights to read through things that have been said and get the right wording to use for all discrepancies. Xx

PS not on a par with your MacD🤮 but I foolishly succumbed to a garage bought cream cheese and chives filled brown bap yesterday and had the worst heartburn I’ve had since my pregnancies for the rest of the afternoon and evening. Why oh why didn’t I stick to my usual large slop of wet cottage cheese on a gluten free rice cracker with a scrape of Vegemite and a huge glass of tap water??!🤢

Buffy14

I got a no to mandatory reconsideration aswell they insist I shouldn't get any points for my hearing loss and tinnitus in right ear , I'm not appealing I can't cope with the stress .

Lupiknits in reply to Buffy14

Numpties

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Lupiknits

I've only had a swift look through ( my will to live could take no more) For toilet needs I got null point but the assessor said I would be seeing my GP. my GP says I have urge incontinence - not the stress "oops" moment when you pee a liitle when you sneeze or cough, but the kind when I have a full bladder. By the time I am aware of it and can get to the loo I've soaked through a full strength Tena lady, my undies, jeans, the seat and floor. I must NOT apparently "go, just in case, but do before leaving the house. Scared of being the one child who smelled of wee in every primary class! My washing machine is on the go pretty much as often as when I had toddlers .

The GP offered a med which will take 6 months to work, but it gave me such a dry mouth and acid reflux, I'm not taking it. I see the GP this Friday for another med and requesting NHS style Tenas, which I'm bulk buying from Amazon at the moment. Expensive! This can be added evidence for the Trial, sorry, not sorry.Tribunal. The Tribunal will accept evidence not submitted before. I have a rheumy appt and a separate Raynaud's appt next month.

This urge incontinence will give me the points I need, if taken into account.

I haven't looked much at DWP but it looks like they are trialling a paper based Tribunal system. Not for me - they can see me in my full skinny pale and frail glory . My friend is joking I must pee my pants during it! And definitely wear my hand braces too.

I'm contacting Welfare Rights who were brilliant last time, but this time just told me to say nothing had changed and send a list of meds.

One cloud off the horizon is that the DWP originally said I might have been overpaid and pay back. No longer so. I did wonder how they'd work that one out though. X