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Tag Archives: Muscular Dystrophy

Groundhogged

Twelve weeks in and ………… I’m still waiting.

Still waiting for the commode shower chair, still waiting for a hoist sling, still waiting on my property completion, still waiting business organisations to update my address, still waiting for people to do what they said they would.

I’m jaded, very jaded.

The ‘here to help’ organisations are the ones who are failing me, dehumanising and degrading me, and all they offer is patronising hollow apologies.

Someone asked if I felt settled. I’m not really sure what that means, I am used to the new environment and have cobbled new routines, I’m getting used to the noises and sudden interruptions. I’m getting used to never knowing what day of the week it is or which carer will appear when I press the button, but does that make me settled.

All my possessions are around me, pictures displayed (okay I haven’t hung the wall ones yet, still pondering) but I still have moments when I think ‘I need that book’ or ‘I’ll watch that dvd’ or ‘that craft item is just …’, then remember that that item was gotten rid of.

There was a ‘lovely’ meeting with yet another Social Worker who has taken over my case. When she visited my gander gandered and that tiny flickering spark of me sort of ever so politely let rip. I reminded her that I’ve had no contact since Christmas, no reply to emails, no help with the forms, no help with the move, no help with the adjusting (I have had help, and I am extremely grateful to those who volunteered), I wanted to make the point that as an organisation, alongside OT, the systems are failing.

Now don’t be shocked, but as we’ve entered autumn with the (supposedly) cooler days I have been doing a spot of yarn twiddling. A friend tagged me in a post about glow in the dark wool – I know – which sent my down the Google rabbit hole of ghost patterns, that lead to some yarn being purchased and ‘Howl’ the ghost was crocheted into a new topper for her gear stick πŸ‘»

I’ve also made a few ‘mask mates’ for the carers. It felt nice to give back some too.

Just four weeks and a few days until BFF comes to play, I mean stay. We both crave some normality, some familiar, some escape, some laughter.

So I’ve been quiet because I’m still stuck, waiting for those here-to-help organisations and it looks like being another couple of months before the snail creeps an inch closer to any goal ….. so don’t go sprinkling salt anywhere just in case πŸ˜‰

 
6 Comments

Posted by on October 9, 2022 in General, Grumble, Life

 

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Four Weeks and…..

The quote above struck me as I was playing partial attention to the tv show that used it. Yeap, I’ve died a few deaths in my time but this one has been the most extreme. I could write a list long enough to paper the under-stairs loo of things I either didn’t know and should have or underestimated the effect of. But still, you either stay still or move forward. Thank you for sticking with the tedium of my move, I do appreciate the support, if I’m the lone dog barking in the woods there is someone hearing me.

Soooo……. what’s been happening these past couple of weeks. Well as I sit here in my sun baked lounge with the window propped open and the fan oscillating at full blast (as it has every day since moving in) it seems more than it feels.

Handyman fixed the toilet seat and installed the cupboard shelving brackets and the house keepers put things away in the cupboards. They also found my drinking glasses (they were at the back of a high shelf in a kitchen cupboard), still no tin opener though, and the last box was sorted and cleared. The only box remaining has all the pictures that were on my walls, but I’m in no hurry, I cannot decide what I want where. When I moved into my beloved hovel it was eight years before a picture was put up, lol.

In general life has become a little more uniformed and routined, with the occasional hiccup, but those happen where ever you are. The daily unexpected interruptions slightly wrinkle, the come to get laundry/return laundry, ask if I need anything, has this been done, need to sign off your book, come to wash your dish etc etc pluck the irritation nerve somewhat. If I’m occupied in something on the iPad or phone I’m unlikely to give extensive details because that’s my personal business and unless it’s directly relevant to living here, then it’s ‘nunya’.

OT over the past two weeks has been joyously fantastic. I’ll let you read that line again because I know, dear reader, you’ll be going ‘huh!’. Yes, it has been a blissful delight, but there’s a very big reason ….. I’ve not heard a peep from any of them, no texts, no emails, no calls, no visits, no letters, nothing ….. of course the downside is that nothing has been done either, no word on when the correctly adjusted commode chair will be delivered, no finding a suitably supportive sling and useable hoist.

My beloved hovel was cleared of the things I left behind (some furniture, fridge, washing machine, general clutter etc). It knocked me for a doozy of a downer when the guy unexpectedly sent photos of the cleared rooms with his invoice. Oh gosh, it looked, neglected, unloved, so final. yes, change comes with melancholy, I have had to let go of so much, compromise on so much, both physically and psychologically in order to move, but I’ve gained nothing, yet. It’s hurting and I’ve not really started healing.

The Solicitor’s forms have been completed and signed, all the supporting documentation passed over, it’s moving at its own pace.

Some have asked if I’ve settled in. I didn’t know how to answer that, my things are more organised, although the dishes never get put back in the right spot and I rarely have the same mug each morning. There’s no routine as to who works when so I frequently don’t know what day of the week it is. Experts say it takes three weeks to develop a new habit and 12-18 months before somewhere feels home. I doubt I will ever call here home, it’s where I live, the flat, possibly my flat but never ‘home’ and all the connotations that brings up.

What’s next …. once I have a sling and hoist sorted I can go to the wheelchair center (haven’t been out on my own this century 😲) and be assessed for the powerchair, I’ll need to pass an indoor and outdoor driving test and an eye test . Plus various seating types can be trialed to ensure maximum comfort, even potentially have something specific moulded. Okay so appointments are booked four weeks ahead and it could be another 4-6 weeks before chair arrives, but it seems reliable.

So….. there you have it folks …..

 
4 Comments

Posted by on August 14, 2022 in General, Life

 

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Boxed In And Sticky

Well folks, I arrived ….. that was the easy bit!

Pre-move day two delightful chaps arrived with boxes, bubble wrap and paper, oh and a pint of milk so they could brew up. They set to and during our chats and anecdotes made two remarks, one that I was organised and had made things straightforward for them and two that I was a ‘character’ (what, who? Moi! Well I say). After a bustling three hours the twenty five boxes were taped up and marked and things were ready for the next morning.

Move day – while still in my pit I went to use the house phone but my provider had already disconnected the service (charming) thankfully my mobile was at hand and I booked a wheelchair taxi for 12:30 to take me to my new digs. After a tearful goodbye to my last carer I had a few minutes of quiet reflection in my hovel of thirty years, two months and ten days. It looked worn, dusty and unkempt which was a sad sight, both of us suffering from my deterioration. Before long the big red van pulled up and the two chaps cheerily arrived ready to start the lifting and shifting. After a few false starts I sort of otched on the slide board into the wheelchair and the movers kindly oiked me into a comfy position and parked me in a corner. It seemed to be endless the stream of boxes and chests of drawers that were carted out. Then the big sofa and the big desk.

At about noon my mobile rant, taxi had to cancel because his airport run had been delayed and he wouldn’t be back in time to take me. Bugger, oh well, something had to go wrong. I had saved another company in my phone and called them and they said they would be there is about 30/40 minutes. That was that sorted. Time for me to vacate and wait in the hot sun. After a final brew up and a walk through check, the door was locked and keys put into my bag. We waited and waited. I called the company back to their profuse apologies they’d forgotten me (is that even possible!) and a car would be there in five. Hmm, yeah, a car arrived not a wheelchair car so taxi driver called and a wheelchair car was dispatched. I told the movers to head off as the assisted living complex were expecting them and had keys, they reluctantly set off but within a minute the wheelchair cab arrived, I was loaded and off we went. My throat choked but I kept it together, just.

Somehow it only took half the time to unload. Furniture was put in place, boxes were organised and BroInLaw started unboxing the kitchen ones putting stuff anywhere so it was somewhere. A couple of carers arrived and made up the bed. I said thank you and goodbye to the movers and made arrangements for how the boxes and packing to be collected. The front window doesn’t stay open so a tin of tomatoes has been deployed as window stopper, it’s a South East facing window so the strongest afternoon sun doesn’t bake like my previous West facing window.

I was in ….. rather smoothly if somewhat stickily.

A couple of the carers came Wednesday and unpacked a number of boxes with me directing where I wanted things for now. They chuckled at the stories, marvelled at my antics and adventures and were pleased my instructions were clear and followable. I tried bribing them with a chocolate biscuit but they declined. It really helped make the place look less like box city. There are still boxes in the bedroom and bathroom and it’s curious the things that haven’t come to light. I have a tiger mother and cubs ornament and a tigger drinking beaker yet to be unearthed but they were the lad things packed in a box.

There is a handyman who is available for small jobs I’ve pre-warned him that I have a lot of pictures to go up. That was all the easy bits.

OT had ordered a different style of shower/commode chair to be delivered last week, it was not there. Trying to shuffle from my old chair onto the loo with very few hand holds was sweat inducing and exhausting, shuffling back was even harder. On day two, just as I expected (and had remarked back in May) the loo seat broke. The new shower chair arrived sounding like the tinniest hostess trolley and as hard too, as well as about an inch and a half higher, after sheer brute force and belligerence on my part I got onto it. During that time I crunched bones, pinched skin, stamped circles on my thigh courtesy of the hole where the removed arm slots into, bruised my butt because the boney bit of my butt is against the hard uncushioned plastic. I still cannot defy gravity and slide up hill (how very rude of me). The concerned carers are all remarking how intolerable it is for me, how undignified (please, I lost that many years ago) that something else has to be done and urgently, also amazed at my ingenuity, fortitude and strength. The manager initiated an ‘urgent’ OT visit, but that’s days. I left messages on my OT’s phone but the whole system is not geared up to create solutions, just to provide the cheapest, standardised kit to sort of solve a solution. We’ve botched a new method, using my old cushioned shower chair, standing commode bowl on the floor beneath and hope it catches everything. Sorry TMI??

Anyway, I survived the packing, the move, the heat and the hottest day of the year. But I might not survive OT, they bring out the very worst of me and I don’t like it.

On a much lighter note, I’ve had some very sweet cards from my carers wishing me well and saying they will miss me, I will miss them. They all helped me transition into this world where I need personal care.

 
5 Comments

Posted by on July 21, 2022 in General, Grumble, Life

 

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Snail Speeding

Things have moved on a pace since the last update. I think my snail has had one too many energy drinks!

A final ruthless rummage of my accumulated clutter was done and the charity was called to collect my donations. Along with the seven stuffed banana boxes, a couple of rammed gym bags there was a box of glasses and a couple of bags of oddments. Mixed feelings as these things were taken out my door, relief that it was gone, a touch of ‘should I have kept that trinket’ but mostly I was comfortable with the things being gone. The hovel instantly felt less disheveled and a snip of progress had been made.

A fantastically generous gal pal had offered to eBay some other items and after bagging and detailing those she came and collected them. It surprised me that something like a Cape De Monti trinket box barely made Β£5 where as two boxes of DMC embroidery silks fetched enough for a decent dinner for two! The Wedgewood Jasperware is worthless but a Disney cross stitch kit made double figures! How tastes have changed.

Slowly all the various drawers and cupboards have been gone through and cleared. Yesterday in a drawer it seemed I was a hoarder of post it notes, playing cards and staple removers! Who needs four staple removers!

The fridge freezer was ordered, delivery within ten days but the email confirmation said something different. I’m hoping madly that it’s there in time!! Profiling Bed. The tale is woeful and quite a debacle involving OT so in the end I just ordered my own, that’s being delivered and installed today (note to self – order new fitted sheets).

Phone and internet has been sorted. We’ll sort of. The switch over will take no more that 24 hours … but … the white socket is in the most ridiculous place. The door in the kitchen opens against the side wall, that’s where it is, there’s no power socket along that wall, no shelf to put a phone on nor room to wall mount a phone. The socket can be moved after the line is active, which is after I’ve moved in. Not figured out how to plug a phone in to tell them to come move the socket.

The list of change of addresses has been made and a few have been ticked off. That reminds me, did I put the electoral register on.

Slight technical snaffoo with the tenancy signing. After all the paperwork was signed and I paid the one week’s rent, when I logged into my association account I discovered my account was in arrears, huh, wait, what, how can that be, I’ve only made one payment two days ago!! Turns out there is a set up fee no one told be about. Great.

There are two items I am having the most quandaries about. One is a four foot bell rope, complete with brass bell and fittings. I cross stitched it for my Mum in single strand embroidery silk on Irish linen. I had looked online and these were selling for Β£80+, yikes. Heart and head are in full war, I made it, but it’s Β£80, but it was for Mum, but it’s Β£80! I’m packing it to continue pondering. The other thing is my front room curtains, they’re just curtains but I really really like them, but they’re full length and would need turning up for the new place, but I really like my thick lined curtains, I’d need to get hoops as it’s a pole rail at the new place and what’s already there is not my choice, but I really really really like them and my sister chose them for me. ::sigh::

The mind is hopping from one thought to another, it’s draining. There’s an item in my house I’m searching for, but I can vaguely recall having to throw it out but I’m not sure I did but the damn thing is eluding me and every nook and cranny has been searched, every drawer and cupboard gone through and it’s not there. Hmmm…..

Manic, chaotic and I’m still not ready………

 
7 Comments

Posted by on July 8, 2022 in Life

 

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Sunny Hurried Snail

Did you know that snails move quicker when in direct sunlight? Well this bugger has been getting a shift on as if he were in the Sahara or Atacama at high noon!

Last week was another phone call to complete another form, which resulted in another call to reiterate for the third time something blindingly obvious. After that the lovely Housing Association lady said, “Right then, this all goes to Lettings and they’ll draw up the tenancy agreement and we’ll arrange to visit to sign it.”

😳

I asked the impossible question – how long ish will that be? The answer was not too long, but soon, hopefully. (Now dear reader is that one day, a week, a month??? πŸ€·β€β™€οΈ)

The answer is, two working days. Today I got ‘the call’ wanting to set up an appointment to sign the agreement and take the first rent payments, would today be convenient.

😳😳

Now, slow ye ‘orses!! I can’t be ready to move in a few days, OT need to get on board (better chance getting Boris to speak clear precise truth) and equipment delivered. I explained that I’m not comfortable being forced to pay a still unknown rent on a property I cannot move into because a third party can’t get its arse involved. They graciously conceded that it was a problem and an issue, and as my OT will be visiting the flat next Wednesday we’ve agreed a sign up date of 1st July.

😳😳😳

PANIC!!!  
- There's the charity stuff to finish boxing (awesome gal pal volunteered an hour tomorrow morning),
- charity bods to collect stuff (volunteer doing that before the end of the week)
- Packing removal quotes to get and decide
- Phone/Internet to sort
- FridgeFreezer to buy and get delivered
- Profiling bed to source and order
- list the list of lists, that list the other jobs that need doing, things that need to be not forgotten, and general thoughts.

😳😳😳😳

I’m not ready, I’m never going to be ready…..

🐌

 
6 Comments

Posted by on June 21, 2022 in Life

 

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Snail’s hiccuped

Hello happy (bored) readers…… time for an up-date??

BFF’s first day of her holibobs was to push me to the new place so we could see first hand the area, complex and take some photos and measurements of the flat. She’s an awesome walker, I Google street viewed the route to make sure there were no nasty surprises like no dropped kerbs etc, we set off in breezy sunshine and before long the mile was done and we were there. (BFF is awesome because we wandered to the high street for a subway lunch on the way home).

The complex manager and deputy showed us the flat, the wet room is more than double the size of mine, the bedroom is big to allow a wheelchair to get a round the bed and there are three floor to ceiling built in cupboards. The lounge is slightly longer than mine but not as wide however the alcove is comfortably sized for my desk and office drawers unit, I’m thinking of putting the tv on the wall too. The kitchen is well fitted out with a space for an upright fridge freezer.

We were shown the communal dining room (hot meal available for a fee at lunchtime) and the large lounge that leads to a sunny courtyard. It was quiet, airy and comfortable. My particular flat is south-ish facing over looking the carpark, I will be ‘that’ nosy old biddy looking disapprovingly at the late arriver, with glasses perched on the end of my nose lol.

Before leaving the manager said she was going to chase up the person/department in charge of getting the tenancy application paperwork process under way. That was three and a half weeks ago, still no ‘official’ word from the Housing Association. The manager emailed me on Wednesday to ask if I had heard anything (nope) and must have been able to poke the right bod because within an hour an email had arrived and shortly after my phone rang 😱.

Remarkably the online application form was reasonably straightforward, all rather techy nice. I answered the questions from the drop down menu selections offered. The difficult bit is always the financial bit, the thing is I have income that is paid two-weekly, 4-weekly and calendar monthly, some of my direct debits are monthly or quarterly, and the form asks for weekly figures. So ipad1 had for form, ipad2 had bank account screen grabs going back a few months and the smartphone became the calculator. Checking everything three times I hit the submit button and got an automated reply including a pdf of my completed form – all very wizzy!!

So……we wait…….boxes to tick, decisions to make, tenancy agreement to be produced before the next stage! Yikes!! Nobody Paniccccc

 
11 Comments

Posted by on June 10, 2022 in Life

 

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Do Snails Jump?

Do Snails Jump?

Well folks … what can I say! Things have taken a bit of a leap forward.

Recently I received a telephone call from a social worker (not mine, but in the same office) saying I was on a list as interested in a particular ‘housing with care’ facility and could my details be passed to them so they can contact me for assessment. Hey ho thought I, another rung up the ladder, within a couple of days I was contacted and an appointment was made.

Two lovely ladies came to visit and asked all sorts of questions about the care I currently receive, but more importantly they were able to answer a whole slew of my questions, including the vital one, how much will this cost me? Yes, it costs, but the flexibility it offers, the space it offers, etc, calls for it.

Unbeknown to me, the reason for the speedy visitation was because a flat is available and the previous occupant was a power chair user. The ladies said they would send me photos of the flat and let me know if I was in the running for it. I have been nominated for it with the housing association and now I am just waiting for the paperwork process to begin.

So….ummm….yes…..this summer I will be moving.

PANIC!!!!! This means I have to dispose of about 60/70% of the junk, clutter, stuff, accumulated detritus of life that I have buried heaps and loads of memories upon. Get Occ Health on board to give their opinion on what they insist I need and source a couple of bits of equipment.

It’s a bittersweet change and challenge. I have to move and would be an idiot to turn down this offer as no one knows when another offer can be made.

So……there you go…….eek!

 
2 Comments

Posted by on May 18, 2022 in Life

 

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The Snail Slows

It’s been awhile and I wish I had an abundance of good fortune to tell you all but….well….we are dealing with bureaucracy so…..

The initial housing form must have arrived at its destination because a slightly bulky envelope arrived with two chunky forms in, a medical assessment form and a financial assessment form, along with the covering snotty gram saying complete and return to the office by the 14th or your application will be closed. I checked the send date, it was over a week ago, allowing a week for the return that left me a day to get it completed!

Sadly my grip and dexterity for writing is quite compromised, so I emailed them to say that as mail delivery is taking extra time and I have issues writing, could the deadline be extended. I never heard back.

I spent ages on the finances form, printing off corroborative evidence statements, they wanted full birth and parentage on every single penny of expenditure including things like lottery payments, audible subscriptions etc, not just utility expenses or debts/arrears/ccj’s. I diligently worked out how much my living outgoings and incomings are per week, some things are paid 4-weekly, monthly, quarterly, it was quite the mathematical headache. I did my best to write the numbers clearly.

When it came to the medical form, that was reasonably straightforward, reiterating the care needs I have, what I cannot do (even with help) and what extra I will need. But then it got confusing, a question asked to see me stand and walk – wait a cotton pickin moment ere, am I doing the work of a Visiting Officer? It would seem that delays and the abominable C-word means there are no assessment visits. Great!

After three days of carefully compiling, checking, rereading and then signing I stuffed the 35+ pages into their envelope and stuck it down with sticky tape before getting Neph to post it.

That was the week before Easter – I haven’t heard anything. I was going to email them for confirmation of receipt but forgot it’s a bank holiday so I’ll have to remember to do it on Tuesday.

🐌

 
8 Comments

Posted by on April 30, 2022 in Life

 

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The Pillow Lift

Of course it happens to me……

Nice gent arrives at my door with a pillow lifter for me to try, as I am having problems getting to a seated position from laying down. He goes to the bedroom and I can hear him placing it on the bed. Everything goes quiet for a while, no sound of motors whirring. Hmmm.

Gent then comes back to the lounge “I’m having a bit of an issue, you might see where I’m going wrong” he places the mat on the floor and holds up the cotton cover “this cover goes on this mat, but I cannot see which way it goes”

We both glance from mat to cover to mat to cover. The cotton cover was about a third smaller in width and length than the mat, there was no way it was going to fit. Plus there was only one, cannot exactly guarantee to wash and dry and remake the bed within one day.it depends very much on which carers come at what times.

He checked the label, of the mat, then checked the label of the cover.

“Ah-ha!! The cover is for a leg lifter”

So everything had to be uninstalled and head back to the depot to be resorted to try again another day.

πŸ€¦β€β™€οΈ

 
5 Comments

Posted by on March 17, 2022 in Grumble, Life

 

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The snail slipped a bit

Well, like the old sage adage goes, one step forward two steps back. Yeah, well……

As per my last blog, I spent an afternoon constructing an email that gave enough information to show my need for specialist housing but not give so much personal information out in the broad open, to send to the Housing Department. I carefully read and reread my words before hitting the send button (Feb 28th).

Then I waited…..

I was not unduly worried to not receive any reply for a couple of days, I never am, but by Thursday I thought it curious I had not received anything, even the generic receipt reply. On Monday 7th I received a Mail Delivery Failure notice, curious, reading further there was a trite sentence “Reason: 554 5.4.7 [internal] exceeded max time without delivery”. Hmm, what exactly does that mean, my email has been bouncing around the networks like a ball bearing in a pinball machine?

Whatever the reason, the fact remained that my email had not been received. Poop, or other such niceties. I asked a neighbour (Council admin employee) if she knew the correct email address for the right department and when I told her the address my social worker had passed me she exclaimed “They haven’t used that for over five years!” πŸ™ˆ

Now with the correct address, I sent the email again. Within seconds there was the generic auto reply endeavouring to respond within five working days. Then thirty minutes later an email from a proper live human person asking me to complete an application form. Wow!

The link was to a pdf file of a 14 page form. With the deteriorating dexterity in my hands I’m seriously struggling to hold a pen and write and this form is not interactive, it’s a print it off yourself and complete it job. Dang. Hmm, do I contact an agency or someone to come complete the form, disclosing highly personal information to another stranger, can I trust them to write verbatim, and when can they visit, 2-4-6weeks away. Nope, put your savvy sassy hat on lass and refer to the great god Google.

I was able to download the pdf to the iPad, then via an online site convert it to a Pages document (Pages is Apple’s Word) and then I can attempt to type my answers. Now this isn’t as straight forward as it sounds (when is anything). You are back to the original construction, things move and where lines have been added to write along, the type doesn’t line up, so I had to work out how to delete them to add my text. It took best part of a day to wrangle with the trickery, being careful, concise and precise with the words used. As is my method I then left it until the next day to carefully reread, edit and amend before committing it to printed paper.

The form has thrown up an issue. As part of it you are supposed to provide evidence of identification but I am not prepared to send my passport through the Royal Mail. Even if I was able to get myself to the post office to pay for the belt and braces track, trace and sign for postage, my luck it will go missing in the Council Office. I cannot take it personally to the Town Hall, nor can anyone else take it to the office as they’re not me, so it’s not being sent. I’ve provided contact details of seven different medical/agency/care organisations supporting my application that will have to do for now. If they contact me I’ll offer to email photographed copies or an assessor, who will likely need to visit me, can see it then.

My next thing is ensuring the form is received, I think I’ll email the contact again and ask if I can address it to a specific person and whether they can email to confirm receipt. I’d rather not sit and wait a month, to then find out it’s gone awol.

🐌

 
5 Comments

Posted by on March 11, 2022 in Life

 

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