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Unprofessional Professional

August 23rd, the day when plans went wrong and although it was 99% circumstantial I was 100% put out by it all.

The day was supposed to go along these lines, 2:15pm organised care visit to load up the slow cooker and have a toilet stop, 3:00pm social worker visit to update care assessment and risk plans report, 5:30pm Nephew delivers fresh bread, 6:30pm dinner making care visit.

This is what happened, 2:15pm carer arrived, usual pit stop routine, start loading the slow cooker and the phone goes. Social Worker called to make me aware he was running about thirty minutes late. No probs, all good, sit and wait. Postponed BFF’s walking home 4pm phone call. Waited some more. 5:00pm Social Worker wandered in, no apology, no explanation, sat down ready to go through lengthy assessment which needed many edits, as well as corrections and additions. 5:20pm carer arrives, now I could have said it was not convenient but then I wouldn’t know when or who would be arriving and my dinner was brewing, so forego toilet pit stop and while she’s dishing up my noshings Nephew arrives on time with bread.

So here I am, eating my dinner, Social Worker still here going through report, unable to spend quality one to one time with nephew (first opportunity since Big Sis, his Mum, had died and we’d held the service).

Social Worker eventually leaves about 6:15pm with promise to get report done and to me before I need to send my PIP form back.

As no report dropped through my door by 3rd September I telephoned the office to be told my Social Worker was on two weeks annual leave (why didn’t he mention this at our meeting) and was told someone would call me back. 5pm the next day the call is returned and caller says SW had left a note that I ‘might’ be calling about it (too bleeping right, I was waiting for the promised document). Essentially the note was sorry I’ll get it to you after I get back 🙄.

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Posted by on September 16, 2019 in Projects

 

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Fun No More (until April)

I’ve been wonderfully distracted for the past two glorious weeks, BFF has been to play, stay, I meant stay. … and this time it was greatly needed by us both. Finally after all the stress, anxiety and sorrow attached to so many happenings I could cry my heart out and get physical console. But all too soon, the suitcase is being zipped up and it’s that dreadful time to try and hold the stiff upper lip and say ttfn.

Pre arrival plans had been put in place, a few DVD’s were ordered, two mahoosive boxes had arrived with the neatest of handwriting upon them (more wool to add to the packed suitcase stash) and the dozen bottles of cherry cola added to the grocery order.

We may both be in our golden years, but you’re never too old for a PJ party, and that’s what we do. It’s not all indulgent fun, there were chores and errands done too, the dentist visit with deep deeeep clean and the annual hospital appointment with my neurologist (test results, blood pressure, heart rate all ‘normal’, never thought that word would be attached to me). I supervised while BFF cleared out, sorted, organised my kitchen cupboards (nothing last century lurking in the dark corners), general tidy up of the bathroom and lounge, the resort and reorganising my bedroom draws and I feel sorted, organised, prepared for carers and helpers, etc.

We’ve mooched up and down my High Street, been back and forth to Morrison’s for eats and treats, sat outside enjoying the sun and breeze, took an afternoon stroll along the esplanade and I, yes me, suggested a ice-cream (it was lush), we even went to the cinema to see Downton Abbey (rather good).

Mostly we snoozed, nattered, laughed, chatted, rested, and watched stuff

  • Last Viceroy House
  • Mad Men Season 6 and 7
  • The Green Book
  • Trumbo
  • Edie
  • A Cat Named Leonard
  • Norma Rae
  • Pursuit Of Happyness
  • My Old Lady
  • The Favourite
  • Colette
  • Don’t Eat The Daisies
  • The Right Stuff
  • Spotlight
  • The Girl On The Train
  • Billy Rose’s Jumbo
  • Glass Bottom Boat
  • Man With A Horn
  • To Kill A Mockingbird

Of course the REAL prime reason for being together is a certain four legged furred charmer, known as Mickey, aka #NotMyCat, wandering in when he pleases, playing with his new toys, choosing one of the many seats to snooze upon, getting head rubs and chin scritches galore.

Three quarters of an hour ago we hugged, smiled, said “call you tomorrow”, and off she goes ……… just 199 days to go until we’re back together *fingers-crossed*

Thank you BFF for being everything I need and a heck of a lot more, words are not enough to convey all you do for me, help me, cajole me, entertain and help me.

 
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Posted by on September 15, 2019 in Films, General, Life, people, Pets

 

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Battle Commenced

After taking an afternoon to read the instructional notes and the forty paged PIP2 form, I ruminated, cogitated, considered, made notes, and sat at my desk last Saturday morning and began the dreaded task.

Okay so the first couple of pages were not so daunting, listing the names, address and last appointment dates of medical professionals I have contact with. They only have boxes for three, I have six, hmm, how to prioritise, those I see the most (Physio, Occ Health) or the more important sounding (Consultant, GP) and make a note to add the others in the ‘additional information’ section.

Now to the gritty part, how my disability affects what I do in general areas of life, how it’s gotten around, what aids are used, what extra is needed. The tick boxes are ticked, then the explanation paragraph, how to be concise and exact to cover all scenarios within the half dozen lines in the box provided. Completing these things can be mentally demoralising because you have to admit, in writing, all the things I cannot achieve and the impact it has every moment of everyday, the exact opposite I am trying to think about every moment of everyday. Also I am so used to doing things the way I do, it is easy to forget it is not the general natural way that ‘ables’ do it, my usual is so normal I don’t think of it as different or awkward, but it needs adding to the form. Always keeping in mind the reader knows less than nothing.

I scribble draft one in pencil on my note pad, edit it, and check the wording for its accuracy and spelling before committing it to the form in ink. As my fingers, wrists and arms are affected by my FSHD I struggle holding the pen/pencil and writing clean and clearly for any length of time can cause strain and cramp, so after three questions that’s enough. Time to put it away and come back to it another day. I returned to it Sunday morning, reread what I had written, add something I had forgotten and start again with the next question, and again on Tuesday, making other notes of what to add in the ‘additional information’ page.

So far I have a detailed letter of support from the Muscular Dystrophy Regional Care Advisor and a lengthy report from the Occupational Therapist, I am waiting to receive a second lengthy report with risk assessment from my Social Worker.

Across the weekend I will finish the form, a friend (former work colleague) is visiting Saturday and she’ll read it through to see if it makes sense. Then Sunday I’ll scan the pages into my computer and copy the reports I have, printing my details on the back of every page incase they get separated in the office. While my BFF is here we will wander to the post office and despite it being a free post return, get a certificate of postage, pay extra for it to be tracked and signed for. I’m wondering what it costs to hire a guy with a briefcase chained to his waist because I am not going to be happy if it goes missing before being properly processed.

The saga continues…..

 
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Posted by on August 30, 2019 in Projects

 

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Letter Of Loss

Dear Big Sis,

It’s been a month already, but it’s been a lot longer since I last saw you. Wednesday July 3rd you left my flat early to go home as you weren’t feeling good, you were due to go on a short holiday on Saturday, but you ended up coming home early and the next day you were taken into hospital. I never got the opportunity to visit you, to spend any time with you, to have a conversation with you, we only had one brief interrupted crackly phone call.

Sitting here I am scanning for something of you to focus on, your black gillet often discarded to the kitchen chair, your wooden posh pen, anything tangible to state you were here but there isn’t anything. I see the numerous holiday gifts you brought with me in mind, I see the soft tigger you gave me one Christmas, I see the curtains and carpets you helped me choose when I moved here, tonight I’ll snuggle under the duvet set you bought for me, and so many more other things, but it’s not enough, it’s not you.

I flick through photograph after photograph, but there are so few of you, I have the one of you and me on your wedding day. That’s my earliest firm memory, aged five in the pretty pink dress, jumping out the front door as my cousins arrived, walking into church behind you, following you around the reception until we had that photo taken. Remember I told you, you could get married so long as you never left home. I remember staying at your house and the two cats deciding they would guard me all night by one sleeping between my knees and the other beside my head. I remember telling you a dirty joke, I was about twelve and as embarrassed as hell when you made me repeat it to your hubs. The Sundays we’d play cards, black jack, rummy, or Trivial Pursuit which turned into a mime game with help from ‘the audience’. More recently our trips out, to be holidaymakers instead of those working for holidaymakers. Our London trips, sitting in Westminster Abbey, walking around the Tower of London, being in awed during the Houses of Parliament Tour, being at the BBC Studios. Our world to rights conversations, watching programmes I’d recorded for us to enjoy, the evenings of dvd and take-away, reminiscing of our mutual work places and people. The planning and strategising around birthdays and Christmas. So very much, but still, it’s not you.

Your reflections funeral was beautiful. You’ll never know how many people were eager to travel so many miles to have paid respects to you. We did as you wanted, told them to spend a moment reflecting, smiling, remembering. It was tearful, emotional, especially when your boy stood and placed those two single white roses from the grands, one with T-bods best handwriting and the other a special drawing by mini-me, and the darling little pink elephant (that looked so much like the pink paraffin mascot) they won on their holiday. I knew you were so incredibly proud of your boy, his wife and family, how they are as a team instilling manners, love and boundaries with the grands, how they are trying their very best to keep things right.

I miss you so very much, I am forever changed, lost in many ways. I am empty.

 
7 Comments

Posted by on August 26, 2019 in people

 

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It did indeed thud

Well the doormat actually groaned as the large A4 sized brown envelope collapsed to the floor. There I was, comfy under my duvet, contemplating my day, waiting for morning carer to arrive when this *thunk* travelled from porch, across the lounge, along the hall, into the bedroom and landed in my dozing lobes.

The accompanying booklet some twenty pages, along with the forty paged form, it’s covering letter and return envelope amounted to a significant hunk of pulled tree.

I’ll be busy for the next couple of weeks while I take time to put together my evidence (which I’ve chased up again) and carefully and concisely complete the questions and add the additional details as required.

This is worse than any examination I’ve ever done, the stakes are pretty high too.

 
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Posted by on August 21, 2019 in General

 

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My Mat Remains UnThudded

Well folks we are a week further along from the telephone call stating that the original PIP2 form has not arrived and guess what ……. it’s still not arrived. *sigh*

I grasp the phone and dial the freephone number (ever wondered what their phone bill looks like 😲). After going through the ‘please visit out web site at ….’ schpeel, the press 1 for this, press 2 for that, press 3 for the other, press # to hear these again, I sit tediously in the loop of a very tinny opening strains of Vivaldi’s Four Seasons which is interrupted with the ‘All our operators are busy right now, please hold or you may wish to call back’, back to Vivaldi before being interrupted 30-seconds later with the same voice.

Seventeen minutes later an actual proper live human person speaks! We whisk through the security questions (I sometimes wonder if I sound too confident and knowledgeable when I answer them, too many times answering the same questions plus too many years asking the same questions). Up shot – call back on Monday if it’s not there – it seems last weeks lady was a tad bit over eager in our Royal Mail operatives.

I explained that I wouldn’t be calling on Monday because it’s Big Sis’s funeral and I don’t think I’ll be coherent enough for business. She was incredibly understanding, made a note on my claim (brain was visualising the old 110 screen from my days as a processor) and said to call on Tuesday or Wednesday.

So in limbo, I wait……

 
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Posted by on August 13, 2019 in General, Life

 

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It’s one of those Monday’s, that’s why

Technology is bad enough when it complies with our instructions, but it turns into a belligerent stroppy over tired toddler when it decides to be awkward.

Today I wanted to print off some notices for Big Sis’s ‘reflections’ service, she was adamant she didn’t want any fuss or funeral. I had spent Saturday working on the layout and wording, finding one of the very elusive photos of her and refining it for my purpose. Sent it off to BFF because I always miss something when proofing etc. Left it alone to give one final check over before printing it off, showed bro-in-law and hit the print button.

Printer chugged and clunked, whirred and span eventually printing out the test go, but the picture came out oddly coloured. Damn, colour cartridge must be super low. Discovered how to pull printer apart, remove cartridges and dispatch Bro-in-law to remortgage my hovel for a replacement. He was delayed getting back to mine as the police closed my cul de sac as an elderly gent had collapsed mid street and there were police cars and ambulances galore.

We attacked the razor sharp finger slicing packaging and extricated the cartridge and reinserted into its little housing compartment. Click, clunk, all done. Hit print and ……. flashing lights. *sigh*. We fiddled and bodged, I googled and “ah-ha’d”. According to the manufacturers website the domeflotchy (I am fully conversant with the tech terms) that senses whether it’s the correct cartridge and ink levels doesn’t work after the first lot of cartridges are removed but there is a work around, just hold this button for 15 seconds and presto the flashing lights will cease. So I did and they didn’t. *sigh*.

I disconnected everything, unplugged everything, uninstalled printer from my computer. Drank my (second) coffee. Plugged everything back in, turned on the printer and ……. light still flashing. *sigh*. So I hit print anyway, and it printed it out.

Of course I knew it was going to be one of those sorts of Mondays when I woke up, every hour or so from 1:15am, as I floated around the bed in a sweaty menopausal hot flush, as I turned over and neck made an awful crunch sound, when I poked my eye as I was sponging my face, when I clumped my funny bone on the desk draw.

I want to curl up on the sofa with buttered toasted crumpets, but with my luck today I’d set off my new ear piercing smoke alarm (installed by two very tall svelte firefighters).

Still, I almost managed to order Big Sis’s coffin topper spray of flowers coherently, only cracking up into a few tears as I read out the wording for the two cards. Not a phone call I ever wanted to make but the lovely lady was most patient and concerned to get everything ‘just right’.

 
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Posted by on August 12, 2019 in Grumble, Tech

 

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