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.
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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.
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.
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.
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.
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.
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.
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.
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.
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.
Do you believe in the one? I did. When I was young the idea felt intoxicating. A perfect match. One day I’d wander into the path of my heart’s desire & we’d trip right into love.
I loved all those classic romantic destiny type stories. I still do. Hugh Grant fumbling adoringly & Cary Grant being impossibly charismatic. Real life lacked such charm. I had false starts and wrong turns. The one who wrecked my poor heart. The one I wasn’t ready for, the one who wanted too much and all the ones who were just no good. That thrilling ideal became more complex.
My first big crazy disaster was followed by some close calls. Flirtations & flings. Trigger shy, right? I fell for Mr Big and Mr Darcy, but didn’t do much falling in real life. I skipped, through experiences good & bad. Some were lovely, though didn’t quite fit. Others were terribly misshapen mistakes. Most were relatively easy. Sure there was some hurt, but no devastation. I started to think that old soulmate theory was a ruse. In a world packed with variety perhaps there were multiple probable mates. Many flavour combinations that could work with a little customisation.
Then there was Mr Almost. Nearly all the things I’d always wanted. I think I recognised the difference the moment he entered my life. It wasn’t easy. He was complicated & stubborn & damaged. I am too. It was real, though. He made me feel perfectly at ease & totally alive. I wanted to climb into his brain and study him. I was frustrated, excited, soothed & challenged. I’d have turned myself inside out to make him entirely happy. I couldn’t of course. He couldn’t do it for me either. There are things that can’t bend. And yet, it still felt like fate. The spark never wained.
Grown ups have to do the grown up thing. You accept reality. Move along. There are new people; attention grabbing for a while. Until they pale. Comparison will dull the shine on a new beau. There’s making do, which isn’t as tragic as it sounds. You can have a lot of fun with someone who isn’t your destiny. There’s something to be said for building a life with a person who wants what you want. Happiness probably doesn’t stem from fierce passion. I wish I was the kind of person who could believe that with feeling. That steadier, softer, simpler kind of love is actually really nice. If only I hadn’t felt the wild & raw variant, it might be enough.
So, now I don’t know about one true love. I suspect the truth is somewhere in the middle. There are lots of possible matches for everyone, but we don’t get unlimited chances to find them. What I’ve learnt is while the idea of ‘the one’ is alluring. The reality of ‘the one that got away’ is much more powerful.
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.
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.
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