The crisp chilly peak autumn weather hasn’t lasted long this year. We’re only half way through October and it’s already freezing rain most days. What’s a girl to do on dreary dark night? Spooky nails of course!
It’s not Halloween without a cobweb or two. Add some sparkle & it’s creepy chic.
Black cats are supposed to be bad luck, but I felt blessed with these cheeky darlings on my finger tips.
As a 90’s bitch I can never resist paying homage to my favourite scary movie. Blood & ghost face are a striking look.
It recently came to my attention that Joni Mitchell’s masterpiece, Blue is 50 years old. I find it incredible that words written half a century ago still cut right to the heart of me. I discovered Joni when I was around 12 and 28 years later I still love slipping into the blue. This week I have found myself listening to one song in particular on repeat. It’s Baby Loss Awareness week, as I see others share their own losses I find comfort in Little Green.
Little Green is perhaps the most perfect song ever written. I didn’t know precisely what it was about on first listen but I still got it. It still wrapped me in it’s magical sadness & hope. Green immediately struck me as a beautiful name for a girl. I decided there & then that should I birth a girl, I would indeed call her Green.
I’ve been listening to that song since my teens. Dreaming of the tiny bud who would be my Green. In the passing years I have learned the true meaning of the song, talked to the Green nestled inside me & discovered the reality of loss. Joni was writing about a different, but similar grief. Her words remain entwined with my experiences.
When I dream of a daughter she is a gypsy dancer. All tangled red hair & high spirits. She likes the scent of pine trees & bracing herself against a strong, cold wind. She’s quieter than me, but chatters when excited. I read her everything I loved as a child. Take her to the places that made me feel big things. Her childhood is filled with standing stones & patterned tights & Joan Lingard books & seaside air & empowering women & red liquorice. She is exhausting, exhilarating & exquisite.
When I wake she is a girl in a song. A fantasy my mind summoned; fuelled by 70’s folk poetry and my deepest longing. Listening now is a sweet agony. Pressing my sorest spot because I can’t resist the beauty of it all. The intro wrapping me in the blanket my babies never had. The lyrics bringing the sketches in my head to life.
I’m glad we’re beginning to open up about pregnancy & baby loss. I hope others won’t have to spend so much time alone in their heads with their babies. It helps to talk about losses. To give solidity to those tiny unlived lives. It is such an enormous relief to have the world acknowledge our children.
Autumn has officially arrived and I couldn’t be happier. This is definitely my favourite season. I love that first chill in the air, the rich colours and of course all the spooky fun.
This week I’ve been enjoying that crisp weather & getting out a little bit. I kicked off with a wee (work based) hotel stay. What do you do alone in a hotel on a Sunday night? Mess around & take pictures obviously.
I took advantage of already being in town to meet to with a my favourite man. Covid has meant I have seen him much less than I’d like. So, tapas, wine & chat was perfect. I also took the opportunity to debut the first of my spooky bargains. I kind of want to wear this bat playsuit every day now.
Wednesday brought a midweek adventure in the firm of Frankie Boyle. My sis & I took in his Work in Progress at Glee Club. He was of course hilarious. If e your things, get a ticket. His support, Christopher MacArthur-Boyd is also chuckle worthy. If sharp political commentary & utterly repulsive comedy are your thing, get a ticket.
I concluded the week with a tea party to celebrate my besties’ twins. I’m never happier than when on Auntie duty. Bigger niblings got on with some carry on whilst a bunch of women coo’d over the babas. It was a good Sunday.
It’s 2.35am. I’ve been alerted via social media posts that it’s World Mental Health Day. I feel bound to write something on the topic. However, I’m a little stuck on exactly what that should be.
We’re probably all feeling stuck in one way or another. Nearly 2 years into a pandemic that has changed everything and nothing at the same time. It is surreal to learn that global crisis is status quo for the capitalist monster. It shouldn’t really have been a surprise, but somehow I thought perhaps we might find a way to rise. We haven’t. The incredibly rich continue to suck the (literal) life out of almost everyone else. Those already in the worst positions suffer the most. The rest of us get sick, grieve, sacrifice, struggle and still find ways to pay the rent. It’s A LOT. Even folk with the most robust mental health have floundered. Anyone who was shaky pre Covid probably found the rigours of a plague made them increasingly sinkable.
I’ve found myself in and out of a strange no man’s land. Not ok, but entirely unable to properly articulate the details of that not okness. I’m generally a bit lost. I feel like the world is crumbling around me. We’re witnessing tragedy after tragedy. Death & destruction abound. Our leaders seemingly with no more clue than the rest of us. Politicians still scrambling for money & power as the bodies pile up. Your boss still wants their 35hrs, tabloids still print trash & people are still sleeping on the streets. None of it makes sense.
We’ve already started packaging the accumulated trauma of Covid as ‘burn out’. People write peppy pieces on how to beat burnout with an aim of getting everyone back to bloody work. Back to the commute & the offices even though people are still dying every day. Why? Because despite working from home actually proving to be more productive the higher ups want you back where they can see you. No comfort for the workers. The Tory government continues to grind their boots on our necks too. Cut universal credit amongst Covid & Brexit insanity. Carry on fucking the NHS and refugees and hungry children. Then they film the PM doing puns of their ridiculous slogan and pretend that’s a solution. I’m surprised anyone is still sane.
It’s not over. No definite end in sight. Always another calamity over the next hill & zero provision for help. No extra money for mental health services. Accessing even the most basic support is more difficult than ever. All the people who were already living on a knife edge haven’t gone anywhere. The problem has just multiplied.
So, this year I’ll repeat what I’ve been saying forever. Awareness is great, but to treat mental illness we need money and a different ideology. I can’t see any change in NHS mental health funding or direction until there is a huge change in Downing St. Not merely a change of party, but a shift in the will of power. My heart sinks when I think about how long that could take.
This week I turned 41, which felt very weird. Mostly because I’m not sure that I have actually gotten used to being 40 yet. Pandemic time is very strange. In some ways it feels like the last year didn’t happen. It most definitely did though. The good news about that is I get presents!
I’m lucky girl & received loads of gorgeous gifts. My people know me very well. I’m so in love with the new additions to my wardrobe that I just had to share.
My darling sister got me the perfect transitional dress. This light weight black jumper dress is super slouchy, but hugs my curves in all the right places. Me likey!
Mum came up trumps with this amazing g wrap dress. The lighting isn’t great (no spoons to re do), but it a mixture of red, burnt orange & leopard print. I am very into it.
New shoes never fail to make me smile. So, when I opened not one, but two pairs of knock out shoes. Well done, Mother!
Finally I got these excellent undies from M&S. The bra has little flowers that match the knickers. It is one of markies extra support for massive boobies bras. I love that they make these pretty whilst still having scaffold like support.
I’m even more excited for autumn now that I have this gorgeous clobber to show off.
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.
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
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
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.
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.
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.
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.
I felt super cute, Rachel was on top form & I had an excellent night with my sis. It was exactly what I needed.
It’s been another insane blur of year. The pandemic has given me lots of time & motivation to do big picture thinking. There’s been so much talk of the impact on parents & kids. The decisions to be made about keeping children safe, healthy & happy get trickier in times like this. You’re not here. Neither are your siblings. Being forced to stay home alone for extended periods really rams that fact home. I still think about what I would do. How I would make sure my children would be ok. I don’t think that will ever stop. I’ve thought through how I’d handle every stage of your lives; agonised over choices that are entirely theoretical. I can’t help it. I’m always going to be your Mum on the inside.
This year I will be spending your day doing something joyful. It came about purely by chance. Pandemic rescheduling dropped an activity unexpectedly. It feels strange. It’s not a thing I would have planned, but I think it is good. I’m trying to see it as a celebration of you. Of the tiny amount of time we had & all the wonderful that could have been. I know you would have given me so much to rejoice in.
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.
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.
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.