If I had a little a money…

In recent weeks the cost of disability debate seems to be all over the place again. Mainly able bodied folk rudely telling disabled folk what we do & do not need. It is of course offensive and exceptionally annoying to be on the receiving end of this. Debating your reality us never fun. Hence, I thought I’d do a little run down of the day to day expenses that my disabilities incur. I am far from the worst case scenario, so bare that in mind when you’re processing this.

It feels important to make it clear that sick & disabled people are rarely just given the things they require. There is a myth that equipment, money, human support & treatments are just handed out to anyone asking. They absolutely are not. Any help we do receive is procured through humiliating assessments, long waiting lists & much general fuckwittery. At the end of which our requests are often denied. It’s a special kind of torture to lay yourself bare to unfeeling beaurocrats only to be gaslit & told you’re fine. Or, sometimes even more frustrating, It’s accepted that you need help & such help exists, but it is not available to you for ‘reasons’. We are screwed over time & again, left with the option of paying for the thing ourselves or never getting it. When the thing that must be paid for is essential, that’s not really a choice.

So, bearing in mind that many disabled people’s ability to work full time (or at it all) is impacted by their conditions, how do you think your pocket would deal with this.

Travel

I can’t get around much on my own as I can’t walk very far. During Covid public transport has been even less of an option for me. I have to take taxis everywhere. Using last week as an example, this costs:

  • Hospital App – £11.80
  • Visit Bestie – £11.30
  • Vet – £8.60
  • Pick up Bronan’s Prescription- £8.80
  • Post Office – £8.60
  • Work Meeting – £22
  • Weekly Total – £71.10

Pain Relief

Lots of really effective pain relief options are simply not available via the NHS. These are pain management related items I have had to buy.

  • Heat Pads – £5 per 3 pack.
  • Tens Machine – £65
  • Tens Pads – £5 per 10.
  • Long Hot Water Bottle – £20
  • Microwaveable Heat Pouch – £15
  • Dragon Balm – £2.50 a jar.
  • Lidocaine Patches – £60 per 10 pack.
  • Vape – £35
  • Cbd Oil – £15 per 50ml.
  • Freeze Spray – £1
  • Paracetamol – 56p per 12
  • Massage – £70 per 60 mins.
  • Kinesiology Tape – £5.50
  • Yoga Mat – £20
  • Foam Roller – £12

Disability Aids

I believe some local councils will fit disability aids in social housing or if people meet certain criteria. Unfortunately I do not live in social housing nor meet those criteria. Thus, I had had to purchase any device I require.

  • Walking Stick Ferrule – £5
  • Easi Reach – £10.99
  • Easy Open Food Containers – £25
  • Jar Opener – £5.50
  • Easy Veg Chopper – £20
  • Multi Bottle Opener – £5
  • Auto Can Opener – £15
  • Lotion Aplicator – £8
  • Walking Stick Seat – £25
  • Sock/Tights Aid – £8
  • Bra Angel – £17
  • Hook/Zipper Assist – £6
  • Suction Grab Handles – £28
  • Shower Seat – £35
  • Wearable Tens Holder – £20
  • Press on Lights – £10 per 3 pack.

Services

There are jobs that must be done regularly that I am incapable of doing. There is no support for such things, so I must pay people to do them.

  • Grass Cutting – £45
  • Hedge Cutting – £60
  • Weeding & Garden Tidying – £100
  • Wheelie Bin Cleaning – £8
  • Window Cleanimg – £8
  • Bathroom & Kitchen Deep Clean – £175

On top of the costs outlined most disabled people also report spending more on bills. My gas bill tends to be high as I have a greater need & more difficulty keeping warm. My electricity bill soars with the need to charge various essential aids & technology. My food shopping is increased by the need to purchase lots of pre prepared fruit & veg, free from items to accommodate my dodgy stomach, plus the cost of food waste when I am unable to cook/eat. Having everything delivered incurs a cost as does working from home, which both add to my outgoings. In fact, Scope reports that on average disabled people face extra costs of £583 per month. That’s only accounting for necessary day to day living.

Should a disabled person attempt to do anything beyond the basic there will of course also be additional costs. Try going on holiday, trying a new hobby, undertaking to study a new discipline and you will find that there are always extras/different apparatus to enable a disabled person to take part. Almost every aspect life presents a bigger bill.

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Sunday night vibes…

After two cancellations (at the behest of Covid) & almost forgetting the rescheduled date, I finally got to see Rachel Fairburn on Sunday.

I’ve been cracking up at Rachel’s chat on the All Killa No Filla podcast for a couple years now. This was my first time seeing her stand up. I wasn’t disappointed. Her show was hilarious. If you like gobby, feminist comedy you should definitely check her out.

I think this may have been my first night out since before the pandemic, so I wanted to look tip top. I have this banging dress that I bought to wear on my 40th birthday, but Covid scuppered that plan too. I haven’t had anywhere to wear it in the year since & it needed an outing.

Ly is wearing a form fitting churub print dress
Dress – Pretty Little Thing
Glasses – Where.Light

Sunday night comedy didn’t feel like the right event for the dress, so I experimented a little. Teamed with my favourite velvet trousers and some trusty leopard print the dress took on a whole new vibe.

Ly is standing with her hands in her hips wearing black velvet trs, cherub print top & leopard print kimono
Trousers – Elvi
Kimono – Simply Be

I felt super cute, Rachel was on top form & I had an excellent night with my sis. It was exactly what I needed.

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Ordinary pain…

I have shared some of my pain management techniques in the past. Recently I’ve been experimenting with some new methods and I thought I would share how I have been getting on.

First is a product I have mentioned before, but have only recently been able to properly try. Lidocaine Patches are hard to come by in the UK. They’re expensive and so can only be prescribed by the NHS for a very limited number of conditions. They’re mainly used inpatient and for short periods. I had been able to try them for an incredibly short period of time a few years ago. I found them helpful, but wasn’t able to get a longer term supply. The surge in my pain levels this year sent me into research overdrive. Time and again I read articles & personal accounts of how amazing lidocaine patches were for arthritis & fibromyalgia. I discussed it with my GP who agreed that they would be a good option for me, but she wasn’t permitted to prescribe them. After much searching I found a way to source the patches and bought them myself. They are not cheap. I had mine sent from Canada, 10 patches were approx £60. For me, they are proving worth it. The patches offer excellent relief for my joints. They don’t eliminate pain altogether, but they do vastly reduce it. Patches can be applied directly to the skin and remain on for 12hrs. They offer pain relief for that entire period (the last few hours you can feel their effect lessening). I have also found the patches ease my more extreme period cramps. My approach is to use the patches on my very worst or most active days. I wish I could afford to apply them everyday, but with head to toe pain, that’s just not possible right now. I’m not happy that NHS treats chronically ill & disabled patients this way. Tying a Dr’s hands & leaving then to prescribe treatment that they know is ineffective is utter bullshit. I am however crazy happy that I can now access the patches. I know that not everyone has the means to buy things like this themselves (I won’t always). There is much to be done in the fight for disability rights. In the meantime I am doing what I can to get by.

I’m late to the simple concept of squared breathing. In all the therapy, meditation, pain management sessions etc I have done it’s strange that I didn’t learn about before. I’ve tried umpteen breathing exercises. All touted as a wonder cure, none ever succeeded in doing anything but annoy me. Imagine my surprise when the simple act of breathing in for four, hold for four, out for four, hold for four and repeat actually worked. Squared breathing doesn’t reduce pain, it reduces the panic I feel when my pain starts climbing out of control. Holding off that panic is game changer. All the tension that comes with freaking out increases pain. The whirring fear severely impacts my ability to make clear decisions. In short, the panic makes a horrible situation worse. Carving myself a little bit of time to think with this exercise actually makes a big difference in those unbearable moments.

Diagram explaining squared breathing

Finally, we have CBD. Not a new or unknown thing. This is another one I tried before, but only recently perfected. In the past I tried cbd gummies & oil. I didn’t have much success with either. I found the huge array of products overwhelming. I couldn’t quite work out what strength & how much I needed to find relief from my symptoms. The gummies had no impact. The oil was a little better, but the taste made me gag (& sometimes throw up). The after taste contaminated my mouth the whole day. Every site I looked at seemed to offer different advice. I became confused and gave up. A couple of months ago I tried some disposable CBD vapes. A very knowledgable member of staff in a local shop helped me. In no time at all I had finally worked out the right strength for me. I have now invested in a refillable vape & stocked up on oil. I’m using 10% organic vision cbd oil with a minty fresh flavour, which is very palatable. It’s helping with headaches, muscle pain & stiffness.

Multi coloured vape pen on wooden background

As always, I want to remind everyone that I am not a medical professional. I am only describing what has worked for me. Please consult your Dr before making changes.

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Do you really like it?…

Some of you may be aware that you can leave me a tip on Ko-Fi if you enjoy my work. Well, as of today you can also subscribe for exclusive content for a small monthly fee.

I will of course continue to blog as usual. My writing will also still be appearing in various publications. There will be no shortage of free material to consume, so worry not. My Ko-Fi membership tier is just a little extra for anyone who really loves my work & would like to give my freelance coffers a little boost.

You can join here. Huge thank you in advance.

We’re all from somewhere…

August’s donation needed very little thought. I obviously felt compelled to help those faced with impossible circumstances in Afghanistan.

I can’t even begin to imagine how anyone deals with their world crumbling overnight. Especially when every single gain has been so so incredibly hard won. Our interventions in this country make this mess our responsibility. We must help those we have left behind. If you can please give whatever is within your power to one of the following organisations.

Refugee Council

Rooms for Refugees

Care4Calais

Refuweegee

IRC

You can also help by writing you MP and expressing how much you care about this issue. We must make our representatives aware that we want them to act to save Afghan lives.

Thou shalt never…

I love a good slogan t shirt. However I’m not really into the sensation of anything too restrictive around my neck. Enter, my shaky customisation skills.

I’ve hardly worn this tee because the crew neck felt uncomfortable. After some chopping & sewing I think it’s going to get much more body time. Add the comfiest velvet trousers, a spot of leopard print & you’ve got a look.

Trousers – Elvi
Vest – Monsoon
T-Shirt – GrlClb

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A big black hole…

Do you have a voice in your head? Your own personal narrator. Don’t forget your purse, ooh that’s a nice skirt, my head hurts, what should I make for dinner, did I answer that email? I’ll sit down at that next bench…

A running commentary guiding you. Questions, ideas, reminders. Busy, busy always going. An echo of you, so constant that you often aren’t even fully aware of it. Still there when you need it, though. Working through options when you’re not sure which is right. Slowing your tongue before it spits out something stupid. It searches through your memory catalogue and sounds an alarm when you might be missing the danger. It’s useful. A comfortable, familiar accompaniment to life.

Sometimes that voice goes rogue. It’ll bark at the slightest disturbance. You drop a cup & you’re a dickhead. It starts warning off attacks that aren’t coming. Tells you everything you’re doing is wrong. Maybe sometimes you are able to make peace. You both pause, think again and agree that perhaps that assessment was too harsh. Deep breaths or a task accomplished might win the other you over. On other occasions the voice knows its right. All aspects of your life are disastrous and you are entirely to blame. The inner critic skewers you; drives a fresh hole through all your crap.

Black Smokey hold on white background

It takes training to win a battle with yourself. You must master tricky moves to quiet the bitch in your head. There must be people who manage it. I’ve yet to completely get the knack. My internal voice is spiky. She (I) love to find myself at fault. Guilt comes easy and in no proportion to the perceived sin. My head is well versed in all the hurtful language I rail against. Dismissing your own internalised ableism, fat phobia, capitalist propaganda is tougher than talking down some third party arsehole. Anyway, to a certain extent I have accepted that my silent commentary will always do this. I’ve learned to challenge the initial thought. Wrestle it into logical submission. Sometimes I win , sometimes I lose, but I expect the onslaught.

Which brings me to why I’m engaging in this session of blog therapy. Lately, the voice in my head has developed new habits. She has us on perpetual clueless alert. My warning siren is stuck on active. I can’t calm down. However, when I question the need for this hyper vigilance the know it all in my head has zero answers. In fact, I can’t find answers for much at the moment. When I request help my internal dialogue tells me it doesn’t know.

What am I scared of? I don’t know.

What do I need today? I don’t know.

What should I eat? I don’t know.

Who will I pitch this to? I don’t know.

Should I take more painkillers? I don’t know.

Is this good enough? I don’t know.

What do I want? I don’t know.

Did I say the right thing? I don’t know.

Am I ok? I don’t know.

I’ve been anxious & uncertain before. Decision making has always given me trouble. I’ve just never had such a blank in my head. There’s always been a conversation. Typically I’d scroll through all the things in my life that could be a concern. I see it through to the worst possible outcome & decide how I could manage that. Once I’ve tackled that I can be less consumed by the worry. It’s not a perfect solution, but I have some success with it.

At the moment, there is no discussion to be had. This is free floating anxiety ALL THE TIME. I wake up jittery. I lie in bed nervously trying sleep and I am on edge every minute in between. Identifying real worries has no impact. At the end of that process the voice in my head is still shouting panic! I’m not a stranger to unresolved aniexty. I have PTSD, it comes with this territory. I’ve dealt with episodes of hyper vigilance. I do react to triggering stimuli. I’ve been in the depths of unknowable depression. This just feels very different.

The barbed inner voice can usually be relied upon to give me something to work with. Even if my instincts are brutal, I have a jumping off point. Now everything is so vague. I’m stumbling around in a room full of nothing. This isn’t a period of great change. I am not attempting to make life changing decisions. I have no idea what is going on & neither does my brain.

Black & white image of ly looking out over a beach. Taken from behind.

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I ain’t buying it…

I know you all love my cranky little rants. So, here go, part 3 of all the current trends I ain’t buying.

SHEIN

I get the appeal. They do produce lots of really cute clothes for a total steal. The obvious fast fashion issues aside Shein has another dirty habit. They steal. Specifically, designs from small brands. They are notorious for ripping off independent creators & massively undercutting the price point. A quick google will show you just how often they do this. This is beyond scummy. It seriously harms those small brands & I’m not supporting it.

Wilde Mode
Sincerely Ria
Elexiay

NOUGHTIES YUCK

Let’s stay on fashion, but stray into I just hate it territory. The return of early noughties style is not pleasing me. Every site is packed with ruched barely there shiny satin. I was around in 00’s and I knew then that this was fashion death. I do not understand the resurgence of the Paris Hilton X early days Girls Aloud look. Some looks need to be forgotten and this is definitely one of them.

Orange shiny satin straps dress & lime green ruched mini skirt
Early girls aloud in shiny strapped outfits.

PROLON

Next up will be no surprise. ProLon is the latest diet fad and it’s gross. Disappointingly this product keeps coming up in my socials. It claims to mimic a fast without actually having to fast. It consists of everything you’re supposed to eat for 5 days. Including soups, shakes, olives & kale crackers. In other words, hardly anything at all. ProLon makes all the usual quack claims; kick starts your metabolism, cleanses your system yada yada. It’s all the usual diet culture nonsense. Barely eating doesn’t clean out your system, whatever that’s even supposed to mean. Starvation diets damage your metabolism they don’t fix them. You may well lose weight eating soup & olives for 5 days, but you’ll put it right back on again as soon as you return to eating actual meals. Diets don’t work. Fasting is not healthy. Please don’t waste your money on this

Diet Nonsense

DISAPPEARING BIKINI BOTTOMS

I’ll finish on a lighter note with the laughably small bikini pants. These are back strong this summer. I’m not denying they look great, they really do. I just have one question, where do I put my vulvu? I don’t care how petite you are down there the minute you move that fabric is gone. Your lips are absolutely going to munch those tiny bikini bottoms. I’m convinced that some sort of glue is involved and I’m not here for it. Neither is my pandemic bush.

Woman in tiny yellow bikini
Does the glue come with purchase?

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Down by the sea…

Last week I headed north for a wee break by the sea. Our cottage was perfect. Exposed stone walls, cute nautical touches & the most beautiful view.

View of Cartterline bay & lighthouse from hill top

My nephew was along for the ride, so I needed cute unfussy clothes that allowed for much carry on. I also had to account for the crazy heatwave. First thing in my suitcase was this adorable skort that I’ve just bought. I’m not usually a shorts girl, but I really love the teenie skirt/short combo. It was ideal for early morning shenanigans with the rascal.

Ly is wearing floral mini skirt, shark vest & cardi and is standing above a pebble beaches bay
Skort – Simply Be
Vest – Primark (men’s)
Cardi – Handmade by my Mum
Sandals – Pillow Slides
Glasses – Where Light
Ly is lifting floral skirt to shoe shorts attached beneath

For our trip to Stonehaven I opted for this polka dot dress. It’s super light and easy to wear. Whilst still offering coverage to prevent burning in the sun. The wind was blowing so you can’t see just how cute this dress is. You’ll have to trust me that it has a lovely shape. Oh & pockets!

ly is standing at the seafront on a sunny day wearing  green polka dress and using a walking stick
Dress – Gift
Glasses – Where Light

Finally for a blowy day at St Cyrus beach I opted for this trusty jumpsuit. Again, it’s super light and easy to wear. I added the cardi later in the afternoon when the wind got up. When I fancied a paddle I went old school & tucked my jumpsuit in my knickers!

ly is wearing a leopard print jumpsuit & purple cardi.  She is standing on a wooden bridge with a walking stick
Jumpsuit – Very

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