Tag: Weekends

• In The (My) Interest of Being Disabled.

  (Authors Note: Though I am a 46 year old Disabled person- I am not expert on anything. I do not have a degree or fancy letters next to my name. I simply aim to look at my situation (specifically) with the humor intended.

  That said, not one Disabled person is the same. We are all different and each one of us has needs that must be met and it sucks balls that in the year 2023 (almost 2024) we’re all still here fighting for our right to be seen and heard. To be given basic access to day to day life. I hope one day that changes. I truly do. But for now I hope you’ll enjoy this blog and laugh along with me)

  This morning I woke up. Like every morning I hurt all over. My hurt seemed to be amplified . Radiating like some kind of modern day pain beacon. Come to think of it – if my pain becon made a noise – it would probably be ” Ow! Ow! Fuck! Ow! Ow! Fuck” but I digress …

  After grabbing hold of Penelope for support ( And before you lot get some idea – please get your mind out of the gutter! There is no Horizontal Blanky Dance afoot in my abode! Not for lack of wanting to mind! It’s simply due to the fact that my body is no longer able to perform accordingly *ahem* due to things hurting way to much) Penelope is my trusty bed pole that I use to help me turn over onto my side while in bed and, to help me sit up and get the legs out and the feet on to the floor in the mornings.

  Next, I grab Bert and Ernie . Burt and Ernie ( called so because they’re always together) my trusty el cheapo ‘got em from the Chemist’ crutches that I’ve had since Moby Dick was a tadpole ( My Father’s expression – Not mine. Although, Moby Dick was written in 1851.. which was inspired by a whale who died in 1838 -Which presumably was a Beluga Whale, which according to Google can live upto 50 years … means that technically speaking- and it’s one HECK of a stretch- Moby dick was legitimately a tadpole in the year 1788)

  Anyway…

  I use Burt and Ernie to help me go to the toilet. Depending on how difficult things are, Hubby may need to help me. I find that I am at my stiffest in the morning – So does my Husband funnily enough ( No… Not like that! Do we remember what I said about gutters?) and the two of us struggle to get me sorted before things get to the point of no return.

  As a rule Bert and Ernie are my main mobility aids to help me get around the house. I have Henry Rollins in reserve ( another pair of rather expensive, sleek, black , slimline, lightweight crutches) – but they’re no good when I need to open a door or turn a light switch on and off – as they have no cuff around the arm for support.

  I also have a sparkly blue walking stick that I’ve named ‘ The Doctor’ but I’ve not been able to use him for quite a few years. Now that i think about it – I’ve not used him since the very beginning of 2020. I hope to be able to use him again one day. He was always fun. He took over after Edna ( my pink walking stick) was retired after many years of use.

  (There’s also ‘Bernard- Brown McBlack’ my four pronged walking aid – but we never really gelled or got on so he just kinda sits in a corner gathering dust.)

  Thankfully I am not going anywhere today – but when I do I either take my red manual Wheelchair ( Bernard Barge-Ass) or Eleanor Wheelie

  One of the things I have noticed since becoming reliant on mobility aids ( and people) for support is the way society tends to treat you. You’re either invisible (not seen) talked at or over ( not heard) and it infuriates me when people assume I’m stupid because I’m sitting in a wheelchair. ( I plan to write a whole other blog on that subject soon. You have been warned)

  Whenever I do go out – I’m either with my Support Worker ( who can fit me, my Wheelchair and crutches in their car) or I require a Maxi Taxi ( shout out to Roy at 13cabs) to go somewhere. I am also the proud owner of a Taxi Card and a Companion Card – which makes travelling a hell of a lot easier.

  Currently, it’s 11:33am . Hubby has gone out to do the weekly grocery shop (I’ve tagged along a few times in Eleanor. So far I’ve not crashed into anything LOL) When he gets home he’ll make us both lunch. After which he’ll have to help me shower.

  Relax folks! It’s not as kinky as you think. ( Hello? Gutter HAHA) I know that when we Married we spoke our vows ” In sickness and in health” ” For better or worse” Yadda Yadda Yadda – but no where in there did it state that “When your Wife gets to her mid 40s she’ll be permanently disabled and you’ll be stuck washing her Foo-Foo McGoo for all eternity!” and honestly, the Man needs some kind of reward for doing it. (THE FOO-FOO- McGOO Award? Anyone?)

  Not many Men would wash their wives Foo-Foo-McGoo I’d wager. He is a wonderful help to me, (despite his constant complaints to Management that his role in things was to remove me of my clothes …Anyway, never mind! The way we do our laundry is none your business! LOL!) so in that respect, I’m very lucky.

  Thankfully, thanks to my new NDIS plan, which comes into effect in January next year – I’ll have Support Workers in to take over helping me shower – so that’ll be one less thing he’ll have to do – which will hopefully mean we’ll no longer have to get up at 4am every day and get some extra sleep!

  We’ve got a quiet day planned ( at least in theory anyway Most of the time my Husband is running around like a blue arsed fly getting all the things done.) Tonight we’ll have dinner, then watch another episode of LOKI -Se 2- while I sit with my feet on Mr. Wilson – The mean, green, peeing machine – for 30 minutes so I can work on improving the circulation in my legs.

  Now, because I know you’re going to ask – Mr Wilson is my Revitive machine. It’s a Circular Disk that you can put your feet on and it sends electric currents up through your legs ( which are at a 30 degree angle mind) in order to stimulate circulation and stop your legs and feet from swelling. I got it on the advice of my Physiotherapist who suggested it might help and so far, he’s right. It certainly hasn’t solved all of my problems – but it has helped. The only drawback is that the electric current tap dances like Fred Astaire across your bladder and *Surprise!* You need to Pee! Hence my name for it.

  You know, I had started out with wanting to write this blog with my thoughts regarding how I found Disabled Access to places and to start a discussion on whether it’s reasonable to discuss your needs with a venue or not – But this blog kinda went in a different direction and that’s OK .

  I hope by reading this blog, people will have some understanding of what my day is like.

  The other blogs will be happening over the coming weeks

  Thanks for reading

  Ceej

  2023.12.17

• Holiday Wrap Up

  Sunday.

  10:31am. It’s the last day of our Holidays and I’m eating salted caramel crackers and chocolate mousse dip.

  It’s lovely outside. I should be outside getting a decent dose of Vitamin D .. Instead, I am inside at my desk and writing this blog ( interspersed with watching Tik Tok videos of the recently reformed BackStreet Boys – and honestly,it’s the best thing I’ve ever seen – and didn’t know I needed) They’re old – and they admit it with no shame whatsoever. And, TBH I respect that.

  We got a lot done over the last two weeks. All the things that we kept putting off due to work and other commitments that are part of our daily routine. However, all but a few of those things have now been ticked off the to do list. Which I am very happy about.

  We celebrated our 17th Wedding anniversary over the break. A low key quiet affair. Hubby purchased a new guitar and I got a fancy new foot massager . Both of us have been using it and it’s done wonders for our feet!

  I spent a large chunk of my holidays chasing up NDIS stuff – in particular my Day Chair and Eleanor Wheelie ( my new electric wheelchair) as well as getting everything prepared for my S100 review. At time of writing this blog – the quote for the Electric Chair has been put forward, the quote for the Day Chair has been received but not submitted ( yet) and all documents required for my S100 review have been filed and prepared for submission.

  Side note: I was able to get my shoes from Dr Comfort. However, they don’t fit *grrr* so I am wanting to see what I can do about that. Stay tuned for updates on that.

  I have no doubt whatsoever that upon my return to work – It’ll be spent chasing up aforementioned things to ensure they are taken care of ( Will it ever end?)

  Speaking of Return to work – another thing I was able to complete was my extension of Work from Home. So, there’s that done and dusted.

  This two weeks off was for the sole purpose of getting all the loose ends tied up and I am glad we were able to do that. No, we didn’t go anywhere ( minus that one day where we went out to breakfast) and we didn’t do anything FUN per say however, what we did do needed to be done and now we no longer have to worry about it .

  For now though I am going to enjoy the rest of my day

  Cheers for reading

  Ceej

  2023.09.24

• The Week That Felt Like a Year

  I honestly don’t know how to start this blog .. other than by saying it has been one of the longest and most difficult weeks of my life

  It’s been one of those weeks where I find myself wondering what it was I’ve done that was so God awful wrong that life felt like it needed to kick me in the teeth multiple times before throwing me head first into a bin and telling me to make sure I took myself out.

  Pretty much, yep

  At the time of writing this blog, I am all over the shop as far as the NDIS is concerned. In short, I have all this amazing funding – but no way of being able to spend it (How it NEEDS to be spent)

  Allow me to explain.

  I have been on the NDIS for approximately 15 months. In that time I have had more ups and downs than a Yo- yo and it’s not only left me exhausted to the point of delirium – but more confused than when I started and at a complete loss how some people are

  A) Able to make their skin stay on and

  B) Remain actively employed.

  When I first applied to be a NDIS Participant (as we’re known) I was accepted due to the fact my Allied Health Providers had given sufficient evidence that proved they were, in fact, treating me for my Cerebral Palsy.

  Cool beans. Excellent. So, I have my Exercise Physiologist, my Chiropractor, my Remedial Masseuse and my Podiatrist all covered by the NDIS. Hooray!

  Over the next few months we bring in an Occupational Therapist, A Physiotherapist and a Psychologist and everyone is all going about their business and getting paid all while doing their bit to improve my mobility, my mental health and my overall well being.

  (For most of my time on the NDIS I’ve been fighting for a Change of Situation- which means my current plan needs to be looked at, reassessed and a decision needs to be made as to whether or not an increase in funding is required. At time of writing this blog -I have been granted extra funding – we just need to remember that)

  So, here’s where things stand.

  In my new plan I have funding allocated for my Occupational Therapist, my Physiotherapist and some new dang-fangled individual called a ” Therapy Assistant” and between the three of them – they are supposed to better improve my life. Meanwhile, my Chiropractor, my Remedial Masseuse, my Exercise Physiologist, my Psychologist and my Podiatrist have all been given the ass with the NDIS claiming “There is no evidence to suggest that these services have helped prevent the deterioration of the Participants current condition”

  In saying that, InstaCare – the NDIS provider who pay all my invoices for me – claim that all my Allied Health providers are there and accounted for and can, as per normal, submit invoices for payment and, according to them.. I have enough funding over the next two years to cover those costs.

  Consequently, seeing as everything is as clear as mud at this point – it’s now pushed through what’s called an S100 (a review of a review) which means more letters of support, which means more documentation ( that may or may not be read) which means more waiting around while things are discussed, debated and determined which means I am yet again dicked around by a Government department who couldn’t organise a pissup in a brewry.

  Thankfully, I have lodged a formal complaint with NDIS Minister the Hon Bill Shorten MP – or his office anyway- and they have informed me they intend to respond to my concerns no later than Tuesday this week.

  I have no idea how long any of this is going to take- but it’s gonna be a long and bumpy road to get shit sorted out.

  In other news, yesterday I got to go out with my Support Worker ‘Miss M’ and she took me to get some desperately needed underthings. Much to my delight,I found some that were brightly coloured and ridiculously comfortable! (Not to mention reasonably priced to boot. So yay that!) Shout out to the lovely staff at Femmeline in Main St Croydon for their helpful staff – especially since I was in a wheelchair- and amazing expertise in helping me find the most perfect fit! It was also while there that I found out that there are 28 Cafes in Croydon and ‘Miss M’ and I decided to visit one called “The Famished Wolf” for a bite to eat. ( Side note: Between leaving The Famished Wolf and getting back to my house we counted 9 Cafes in Main St. We’ve decided we’ll go back sometime soon and find the rest!)

  I was having quite a good day until late yesterday afternoon when I received a message from my Sister telling me that our Grandfather (on my Mothers side) had passed away earlier in the week. Last Tuesday in fact. The only reason anyone in our family found out was due to the fact a distant relation contacted my Mother to pass on condolences.

  We have since found out my Grandfather had not been well for quite some time – Throat Cancer – and a few weeks prior to his passing he had also had a fall and fractured his hip. Our family was not made aware of any of this, during this time, and I must confess to being a little upset about it. *

  I’m sure His family had their reasons but still, when something like this happens you would think they would at least reach out personally and inform us themselves.

  At this point we have not been made aware of any funeral details so we can do is wait.

  I guess we’ll see what the week brings eh?

  Ceej

  *For those playing at home my Grandfather was Married twice. Once to my Grandmother (Dec) and then to Nanna P . Lovely woman I thought. **

  ** Full name not given for reasons

  2023.08.27

• Postponed

  Hello everyone!

  Due to the body not cooperating – This week’s blog has been postponed until Thursday.

  I expect to have it uploaded by Thursday afternoon at the absolute latest

  Thank you for your patience

  Ceej

  PS: To make up for the fact there is no blog today – please enjoy the funny meme I chose for this week’s header!

  2023.08.13