What a lovely lady. Ex nurse superb.
Used Nat insuance card for requisit id
We armed ourselves by re reading the form we sent in to apply for PIP. We checked how I got about the house, really only to downstairs bathroom and back. Food prep - nil etc. How I fed myself and went to loo, went to bed. What I wear. How I dress. How I get around. And of course had a printed list of diagnoses who where when and since for her to take MUCH APPRECIATED
Had a printedlist of medication prescribed by who, when, dosage, any changes for her to take MUCH APPRECIATED
Added a letter from my son on my deterioration and the four page specialist report as timing off to include in original application. She didnt read these but said she would scan them into system for decision maker to see.
Really nice lady. Very like me in personality which was great. I hope this can not be traced back to me or her as I have comments to make which would be very harmful to her job if they got to those who make decisions.!!
On prep food
Cant stand long fatigue, unsteady, forgetful, cant be trusted not to walk away and leave pan on. Poor grip now cant chop etc cant bear weight so not hold pans etc even microwave buttons too hard to push due to new Fibro. Eg have to have e erything done
Eating and drinking
Cant hold cutlery or press on it. Trouble with oesophagus so food now mashed. Can manage a fork with little bit of food on. Have to drink at same time to swallow and clear throat. Used to use pint glass as drink constantly with Sjorgrens. Bottle size less now cos grip gone so narrow bottle with straw which balances on back of wrist brace to take weight.
5
Managing treatments
My husband dispenses tabs into dossette as I can no longer press blister pack. I have tabs to hand but can need reminding due to brain fog when to take.
Washing and bathing
Have sit down shower with face cloth flat on hand cannot wring it out, cant reach high. Dry by terry towel robe and time. Husband washes hair over kitchen sink. All interspesed with ref to fatigue, joints, muscles. Feet soak etc by hubby. No longer able to wring face cloth so now use wipes in am before dress upstairs, use robe as before.
Managing toilet needs, WARNING too much info
Have raised toilet frame cant use cos of musc and joints. Flop down struggle off using walls. (Yeuk) no wipe pain in shoulders cant reach, etc, drip dry, panty liner for all. Using camode at night, no loo upstairs, but now brought it downstairs as much higher than loo so easier. (Lady suggest getting raised seat from ss)
Dressing undressing
Can manage bloomers by sit on bed and hook top on fingers and pull wriggle as much as can (not much.) wardrobe consists of maxi dresses and long cardigans but no fastenings on anything. Kneel by bed, have slip laid out. Wriggle through straps, head on bed and get head thru. Dress same. Stand with usual previsos let all fall down. Hubby then adjusts as nec and helps with cardy. Downstairs with help then he brushes and attemts to put hair up. (Aside bless him but a nightmare!) undressing reverse but hubby gets things off shoulders. Nightdress as before. Bed prepared by hubby so fall in and get sitting with great pain and exhaustion. Poor sleeping meds by bd with drink. Bell for hubby if necessary in night.
Communicating.
Articulate, can work against me, but lady just typed and described brain fog, I couldnt find words, forgetting where in sentence cant write but can use ipad cos no pressure to type for short periods. Can speak on phone with it under chin as cant grip. Dry mouth.
Mixing with other people
Hearing impaired dont like noise, use ear defenders, nor crowds, get anxious, stressed. Gave example of bbq where in shade (lupus) covered up, ear plugs,people watched, took three days to recover.
Money decisions
Make none. Discuss any large item but dont buy much. Husband does all bills etc. I get numbers mixed up and get anxious to state of not being able to speak if made to talk about budget etc.
Going out.
Dont. Except for hosp and occasional family visit. Hubby does all shopping. Cant walk steady with pain. Make it 75 yards to car. Cannot reach bus or train station but even so movement of bus or train would bring on Menieres attack.
Husband drives carefully. Use wheelchair, fatigue, pain, even that cannot be moved quickly or attack come on. Live in doors most of time. Add ref to sunlight, fatigue, pain.
Moving around
Very painful and stiff. (I went to loo, coincidentally she so saw amount of pain, help and support I needed). Cant self propel wheelchair no grip and pain. Need attendant.
End
From start lady added in those things I didnt say, because of her nursing experience. Constantly mentioned diagnosis, exhaustion, pain, inability and the buzz words of repeatedly, reliably etc. First class assessor. Really liked her.
Her conclusion. She could see that I was in pain, could hardly move, had adapted a lot to live. Suggested re contact SS about more aids. Said I was very pale, was exhausted before we began, had long standing and chronic conditions only deteriorate in future and at my age no improvement expected so reporting a very poorly lady who should not be bothered again for an assessment.
So sounds good. All things considered, not the ordeal I worried about, just chatted through criteria. My luck to have an experienced nurse who got out of NHS one year before pension cos of cuts and cuts in gerneral nursing care. Cant emphasise enough her inserting, fatigue, diagnosis, pain, of her own volition throughout her report. Had even me reaching for tissues by the end. Ha
Ok I hope that helps others facing assessment. Be natural, truthful, of worst days on the day, but never forget to keep dropping in all the words, diagnosis, pain, mobility or lack of it ad nauseum throughout. Get a thesaurus! You have no idea how many ways you can say pain and discomfort just in case your assessor is not as articulate or experienced, nor helpful as mine.
I have short cut sentences etc. Hope you could follow. It took two full hours folks.
Off for a 😴😴😴😴😴😴😴💤💤💤💤💤💤💤💤
⚽️
Your love and thoughts really supported me. Thanks so much
Sorry in case you dont know my conditions
Lupus, AIHepatitis, menieres, Diabetes2 recently Fibromyalgia, as a symptom not a diganosis! And Sjorgrens. Also under investigation for anaemia and obstruction of Oesophagus.
Oh lol she even tied my hair up in a ponytail, properly, before she went. An angel
BTW she recommend I go to PALS re poor treatment and GP!!
my daughter as got sle lupus and itp blood disorder
Can anyone please help me. My 22yr old daughter and I are trying to get a diagnosis. Looking back her first flare up (isolated was age 3).
