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.

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 favs 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.

Wilde life…

I am incredibly excited to be working* with the amazing Wilde Mode again. They make the best knickers (& more) in the entire world. Handmade, perfect fit and the coolest prints. What more could I ask for?

Well, let me tell you. Inclusive sizing (xxs – 10xl), eco friendly materials & packaging, diverse advertising, all staff earning a living wage, gender neutral, vegan owned, zero fabric waste & they even plant a tree for every parcel they send. This is exactly the kind of small business we should all be supporting.

Plus, the products are as good as their ethics. I simply can’t get enough these high waisted knickers. I don’t know why but having a big FU on my knickers makes dealing with rotten days so much easier.

If you need even more incentive, there’s still time to grab a bargain in the summer sale. Go!

* Brand Ambassador.

I need a little time…

I have been spreading myself a little thin & it’s starting to show. Hence, I’ll be taking a little break. I have a few posts I made earlier so I’ll be popping out of hiding periodically. In the mean time if you miss me you can check the links.

Ly is wearing floral dress and peeping out from behind a curtain.

Make it easy…

It’s been a tricky couple of weeks, so haven’t been out much. It’s so hot that I’ve been at home in my pants a fair amount. I thought I’d share the comfy & cute looks I’ve been sporting when I have crossed the threshold.

This dress was a gift from my Mum. It’s an excellent choice for this weather. It’s really light, but gives good coverage to avoid sunburn. I love the print and the flouncy skirt.

alt is wearing teen dress with yellow floral print
Dress – Gift
Crop top – ASOS Curve
Kimono – Simply Be

For a wee cinema trip with the boy I popped this dress on. I got it a few summers ago, but haven’t worn it very often. I didn’t realise you could see my knickers through it until I took this pic at the end of day, oops. Another excellent summer for this stifling weather. Loving the tie detail too. We saw the new Croods film & the boy thoroughly enjoyed it.

ly is wearing short gingham dress with tie detail at bust
Dress – ASOS Curve

Finally, today’s outfit. I had one of my nephews this morning, but was too sore for adventures. I introduced him to minions & had a little carry on at home. This skort is my new fav as it is so easy to wear. I teamed it with the comfiest bandeau top & my trusty pillow slides.

ly is wearing blue floral print skirt,  black vest top
Skort – Simply Bev
Bandeau – Primark
Sandals – Pillow Slides

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

Independent love song…

I love supporting small business & independent makers. When I went on a little treat splurge last week I hit up some vendors I’ve been admiring on Instagram & I thought I’d share my treasures.

I’ve tried various symptom trackers and all have fallen short. Be they apps or physical products they never seem to grasp what I need. So, discovering a collection of trackers/planners designed by a person who is chronically ill themselves was a relief. These products give me the space to personalise & encompass all my varied symptoms. They also understand the kind of things I want to keep track of. Impractically Imperfect know all of that. Plus they get that I need it to be easy.

Weekly planner & symptom tracker with floral border
Impractically Imperfect

My little purple laptop has been needing a makeover for a while. I started with a couple of stickers I received as gifts with orders, but got waylayed. When I realised that one of my favourite pin makers was also doing stickers I got right on it.

Purple laptop with bright coloured stickers
Stickers – Hand Over Your Fairy Cakes
Tories lie sticker – grlclb
Friends Stickers – Gift

My last treat is one of those practical things that is also beautiful. I am sick of digging around on my bag for my mask when I need to put it in. This colourful chain will put an end to that problem. Even better I can also stick it on my sunglasses to stop me losing them too. Does this mean I am an old lady? Probably, at least I’m ageing with style.

Rainbow  mask chain on purple background
Mask Chain – Loop and Boogie

There’s gold in them hills…

I’m having a rough time. Everything is a bit of a struggle at the moment, so I’m going to do a wanky, hippie dippy post. Feel free to clock out because I’m about to deep dive into gratitude.

All the Basics

I have a safe, stable home. Food in the cupboards. Running water, central heating. Access to healthcare. A comfortable bed & wardrobe full of clothes. My basic necessities are taken care of and that’s more than a lot of people can say.

FaceTime

And WhatsApp, messenger, zoom & all the other clever doo dahs that allow me to keep in touch with folk. A friendly face or some carry on helps brighten my day.

Pillow Slides

Bought on a whim. Incredibly ugly, but oh so kind to my joints.

Aloe Vera

Aloe Vera is a genius plant. First & foremost it’s hard to kill. If you don’t have plant mum skills aloe is for you. It looks good, it adds oxygen to your room & it’s even easy to grow more from cuttings etc. Added bonus, our bodies love aloe. Need a moisturise, got sunburn, heat rash, a blister? Cut open a leaf and whap it straight on. Upset tummy, mouth ulcers, bad breath, ibs? Add a teaspoon to a glass of water. Wonder plant*

Temporary Solutions

I have a lot of issues with no permanent cure. Hence I have grown to appreciate a temporary solution. Diazepam is certainly not for long term use, but it bloody works for a day or two when your brain thinks the world is attacking you. Jane Austen will not fix my life, but she will soothe things for an hour or two. Whilst mint tea can’t cure my stomach disease, it can soothe the spasms attempting to eat lunch caused. They will return, but the minty goodness will buy me enough time to get home. Temporary solutions are various & abundant. Hugs, hot baths, sex, lidocaine patches, a big glass of wine… Moments of respite are better than none at all.

The Sea

Everything about the sea is soothing. The never ending expanse of it, the smell, the sound of the waves lapping. I always feel calmer by the shore. I can breathe deeper and see more clearly. Pretty lucky that I live on an island. The dazzling deep blue is never too far away.

Bronan

My lovely big loyal boy. Always gentle. My own living hot water bottle. An adorable wee tyrant who has me wrapped around his paw. Who doesn’t want to be awoken by a meowing creature in their face at the crack of dawn every morning?

Vincent D’Onforio

I like how brooding he is and that head moving to maintain eye contact thing he does on Law & Order. He seems like he’d be clumsily kind if you were feeling bad. He’s always despicable when he plays a baddy, which I like, no half measures. I get completely absorbed in the character when I watch him. I always believe it. Also, good name.

Summer Rain Showers

I like the ones that come on heavy, but run out of juice quickly. Summer rain smells good, it freshens everything up and gives me a good excuse not to hang the washing out.

Diet Coke

It is really bad for me, but it tastes soooo good. Big icy cold gulps. I don’t know how to quit you, Diet Coke.

Specs Appeal

Statement specs bring me joy. If I have to wear glasses every day they are going to be splendiferous. Big, colourful, can’t be missed face furniture is the only kind I will consider.

Ian Hislop

It’s very sexy when a person is that good at anything. He exudes the confidence of knowing he’s top of his game. He can slag off the bad guys with impunity because he leads a pretty decent life. He is cute and funny and incredibly smart. I’ve always been fairly sure that he has a huge, beautiful dick too.

Love

This might be where my sincerity gets too much for you. I care not. Life really wouldn’t be worth much without love. Giving or receiving, it’s wonderful. All those little thoughtful things a person does because they love you. Tiny gifts, texts, snapping a pic of something you’ll like. It all feels good. The warmth of knowing I’ve made someone smile or that they wanted to make me smile. Being able to comfort with your words or a cuddle. Sharing milestones & cups of tea. Love is the point, right? How can we not feel grateful if we have it.

Period Pants

A new thing for me and I like them. Wearing a pair to bed is so much better than using a tampon & worrying you might sleep too long. Likewise, so much better for those last days when you’re not quite sure if your period is actually finished or not. I can’t stand the feel of sanitary towels. Nor do I relish the sensation (or risk) of pulling dry cotton from my body. Period pants are a comfy godsend.

Choice

I’m so happy to live in a time (& place) of choice. So many aspects of my life offers abundant options. I can access almost any song in the world from my phone. Look up current affairs, trivia, what time the chemist closes by pressing a few buttons. I have films, shows, games, podcasts, strangers & friends at my finger tips. Whatever food I fancy can be delivered to my door. In theory I can pursue any career I’d like. I can vote how I choose. Do as I please with my body. Get married or not. Sleep with who I want. Wear what I like & go wherever I want (pandemic aside). Choice is not to be sniffed at.

Gardeners

Hallelujah for folk who will sort the garden in exchange for money. I am physically & constitutionally unsuited to maintaining outside spaces. I do however enjoy utilising them. I also like not stressing about ever encroaching weeds. I will never underestimate the peace securing a good gardener brings.

Little People

I have seven perfect niblings. My oldest niece is the smartest, coolest, kindest 11yr old you will ever meet. She will always be my little muffin, but she has grown into a person who makes me so proud. Then there are my brother’s boys who are his complete mini mes. His oldest is so patient & protective with his little brother. It is gorgeous to watch. My sister’s boy is half rascal pirate, half total love bug. He is a joy to be with. My bestie’s big girl is so cute & sassy. She may only be three, but that girl knows what she wants. Then there are her brand new little brother & sister. Newborn twins are a hand full but man alive are they adorable. I am so lucky to be part of their lives. Helping them become the people they want to be is an honour.

Disabled Ammenities

Parking spaces, toilets, seats right by the door on trains. I love them all. Anything that takes into account that every step hurts is a life saver. Extra space, bars to hold onto, not having to wait, all make my life immeasurably easier. Disability can rob you of dignity in so many ways. Things that allow me to navigate public spaces without being humbled are magnificent.

Sister Tik Toks

I love it when my sister and I send each other tik toks. I feel very seen when she sends me clips that make me laugh out loud or that relate to some shared experience. Having a sister is a lovely thing. Having a sister who gets you is even better.

Life has turned out to be harder than I had imagined. Amongst the struggle it helps me to acknowledge all the little & enormous things that make it worthwhile. I know it’s cheesy, but give it a whirl.

*Not a cure or medicine. Speak to your dr about any health concerns.

Another little bit gets lost…

I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.

The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.

Pulse oximeter  with heart rate at 180 & oxygen 95

Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.

There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.

Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.

It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.

All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.

The words I’m not ok on black background

Oh I do like to be beside the seaside…

Oh my god, it’s happening. Lockdown is easing & I went somewhere nice. I put in some mascara. I picked a pretty outfit. Stage 1 of project live again is go!

We’re still quite restricted in Scotland (better safe than sorry), but things are moving. We can now travel out with our local area for non essential travel and see up to 6 adults outdoors. That may not seem like the most exciting development, but it is making me woohoo. We took advantage of the sunshine yesterday and embarked on a mini road trip. My sister, Mum, the boy & I hit the beach. We really do like I be beside the seaside.

The little man is a total beach baby. He literally rolls around in the sand & loves it. We made pirate islands, volcanos & buried everyone’s feet. Needless to say we brought half the beach home with us.

Toddler burying feet and lying in sand

I also found a minute to watch the soothing waves and snap some outfit pics. Here’s to a long hot summer with loved ones!

ly is standing by wall with beach in background. She is leaning on acealking stick wearing cat print swing skirt, sheer t shirt &  sunglasses
Skirt – Lindy Bop
T-Shirt – Pretty Little Thing
Kimono – Boohoo
Sliders – Pillow Slides
Sunglasses – Wherelight
Calm blue sea & sandy beach
Red glitter text necklace  spelling ‘fuck Boris’
Necklace – Topple and Burn