I had some bad news recently that is taking me a little time to process. I’m fine, it’s not related to my health. The last few weeks have felt somewhat surreal, life goes on, but I am caught in my own head. I hate to be so mysterious, I will share more when I’m ready.
In the meantime, I feel somewhat contained in my own bubble. A little trip up north with family was lovely. Lots of peace, fresh air and of course carry on with the boy. We absolutely adored the outdoor infinity pool at Portavadie. Warm as a bath, but surrounded by the wildness of the loch. It was beautiful.
This boy loves to torture me with seaweed.
In keeping with this air of strangeness are the election results. I don’t know entirely how to feel about the situation we find ourselves in. I am of course delighted to witness the Tories decimated. However, it is hard to rejoice in a Labour landslide when they are a mere hair’s breadth away for being Conservatives. The rise of Reform is terrifying. I despair at the ignorance & hate that drives their increased popularity. SNP losses are incredibly disheartening and I hope in part due to an anti Tory rather than pro Labour vote in Scotland. I don’t feel hopeful of real change under Starmer. I would love to be proven wrong.
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This month I continue to support the people of Palestine with my charitable donations. I still find it extremely difficult to believe that we are witnessing a genocide happen in real time, ignored by most of our leaders.
Watching the videos coming out of Palestine is unbearable. Palestinians are forced to live this horror, so we cannot turn away. This week I have been inspired by the amazing Robyn Boyle and her work with Gaza Genocide Emergency Committee promoting boycotts. To quote Robyn, a boycott is an easy thing to ask of people because in a sense, you’re only asking that they do nothing. Boycotts are a free and simple way to take action. BDS (Boycott, Divestment & Sanctions) are a great resource on who to boycott, with location specific information. Money talks, where you choose to spend yours can have a huge impact.
We must of course also keep pressure on our politicians. They work for us, public opinion is overwhelmingly in support of a ceasefire. It is incumbent upon us to make that clear.
For my part I have also chosen to donate to UNFPA’s ‘Mama Kit’ campaign. A Mama Kit provides essentials for women with newborns in areas affected by natural disasters and conflicts. Gaza is currently severely lacking in food, clean water and medical supplies. One of these kits really could mean the difference between life and death.
Time to talk day has just be crept across my timeline. I’m hoping it’s a testament to how attitudes have changed towards what is needed in the mental health sphere that I’m only being alerted to it at 9.30pm. Despite my cynicism I clicked and perused the website.
Sadly, it’s the same old story. Like most other mainstream advocacy for mental illness, Time to talk fails in tackling the real barriers people with mental illness face. Of course it is important to dispel stigma around mental health problems. It is also great to encourage people to support friends, colleagues etc. The tips on how to approach such conversations are fairly helpful. My issue with this model is that I don’t believe it acknowledges the depth & breath of the problem. In fact, I would go further in saying that the offering a listening ear platitudes can even diminish the experience of many with mental illness.
I’m 43yrs old and I have managed various levels of mental Illness almost entire and life. In all of that time the NHS has been under resourced in the mental health sector. As the years have gone by funding has been slashed and the problem has grown. We have been at crisis status for a very long time. There has been an uptake in mental health awareness. Campaign after campaign successfully identified warning signs and urged us to seek help. Unfortunately, the help requested is most often not forthcoming.
At the moment just getting a Gp appointment can be an enormous struggle. From there referral to primary mental health services always results in landing in a very long waiting list. If you can survive that wait, the treatment available can be limited. The first line is usually a limited course of CBT (cognitive behavioural therapy). CBT can of course be effective for some issues. It is not an answer for more complex mental illness. Alongside CBT there are a variety of helplines and websites, which can offer valuable information, but do not constitute treatment. There are of course psychiatric medications. These can be life saving and do improve the lives of millions. However, they are not magic, most often they must be used in conjunction with other therapies.
A referral beyond the intial interventions already mentioned is difficult to obtain. Infuriatingly, not everyone merits a place on their waiting lists. Those who do make it are in for another privilege wait. The quality, duration & efficacy of what is available at the end of that line is unknown. There are excellent professionals, treatments & resources, but they are stretched beyond thin. There simply aren’t beds, funding or staffing to provide the appropriate treatment & support for everyone who needs it. The result is, most people are shirt changed. Problems that could be caught early are allowed to progress. Serious problems become emergencies. In short, our population suffers more mental illness and become trapped in illness for longer. Some, forever.
Beyond the personal tragedy, the social and economic toll this takes is clear. People become unable to work, care for their families, participate in their communities, they then are laden with whole new set of problems. This of course negatively impacts their mental health and round they go. More people end up in crisis with no where to turn but emergency services, which are not equipped to render proper treatment. Again worsening the situation of the individual and eroding resources available overall. Apply this cycle across the board and it becomes obvious how vicious it is. It is an enormous widespread problem that can not be solved without massive funding, recruitment and a re evaluation of government policy.
Atop those failings is the fundamental shortcomings of the message itself. Breaking down stigma is vital. However, I think the focus of these campaigns, asking how people are feeling, actually is listening to the answer and so on, don’t go nearly far enough. It gives the impression that all mental illness can be easily solved. The adverts and literature are always about depression or anxiety. They show the palatable side of these conditions; someone who has a difficult period and with a little help from their friends gets better. Images of people crying or holding their head in their hands distort the reality of living with such conditions. When someone can’t get out of bed or in the shower for days on end, when they can’t function or find relief despite those caring chats it’s a shock. A check in with the Gp & some anti depressants won’t cure everything. Mental illness encompasses a myriad of conditions. Symptoms can be extraordinarily distressing and debilitating. Some are enduring illnesses that require complex and specialised treatment. Conditions like schizophrenia, Ptsd or Bpd are rarely discussed. Instead they’re sensationalised & misrepresented in the media. Perpetuating dangerous ideas about those living with certain conditions. The fear and shame have not been dispelled. We’ve merely carved out a tiny category of ‘acceptable’ mental illness.
The recovery narrative presented in mainstream mental health advocacy is too simple. Not everyone gets better. Lots of people instead learn to manage their mental illness. Others have recurring episodes. They are still smart, loving, valuable human beings. When all society is presented with is neat stories of struggle, seek help, return to health forever expectations are unrealistic . Those who don’t follow that template become doubted. Compassion turns to thinking they’re not trying hard enough or maybe they’re exaggerating. Stigma persists. We need an informed public. Not only on the broader experience of mental illness, but on ways to bring about change. People should know why our services are failing. The power of our voices and votes must be understood. We also need education around navigating the systems that exist. Everyone should be aware of how best to advocate for themselves and loved ones. We do need to talk, it’s just a much bigger conversation.
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The government has launched yet another useless campaign. This time they claim the aim is empowering & dispelling myths about disabled people.
In my opinion Ask Don’t Assume is a big fail. I don’t seem to be alone in that opinion. Many disabled people agree that encouraging the public at large to ask us whatever questions into pop their heads is a terrible idea. The government claim to have done extensive research. According to Minister for Disabled People, Health & Work, Tom Pursglove that ‘extensive research was with 500+ people with lived experience of disability. To be honest I’m surprised they found 500 people who thought this was a good campaign. However, with 6.3 million people currently entitled to disability benefits*, consulting 500 does not qualify as extensive.
One of the problems I encounter as a disabled/chronically ill person is maintaining boundaries. So many strangers don’t think twice of asking personal & invasive questions. Almost every time I leave the house someone will ask ‘what’s wrong with you’. In recent years Tory policies regarding disability benefits have led to more people holding hostile views. Disabled people are often viewed with suspicion, which leads to strangers demanding information from me. People who know nothing about me or my circumstances feel entitled to my private medical information just incase I am somehow ‘scrounging’ benefits. A government campaign with the tagline, Ask Don’t Assume, legitimatises this behaviour.
Further, a lot of the campaign materials include toxic positivity/inspiration porn content. I watched a video with a woman describing her disability as a strength and as something that ‘can give back’. Everyone is of course able to decide what disability means to them, but none of this resonates with me. My disabilities make my life much harder. There are lots of thing I simply can not do. Even the most mundane of daily tasks are negatively impacted by my conditions. That doesn’t feel like a strength to me. I also cannot comprehend how a disability ‘gives back’. Do my defective knees perform acts of service? Or is my daily fainting somehow contributing to a greater good? If so, I haven’t seen the evidence or benefit.
I do not believe that this narrative is advantageous to the disabled community. Our value is not tied up in how well we overcome our disabilities. Disabled & sick people require accommodations. There will always be things we cannot do without assistance or at all. Our bodies do not function like the average person. There is no amount of determination or strength that can change that. The onus should not be on us to make abled bodied people feel comfortable with that. Disabled people should not have to be grateful, inspirational or make themselves ill trying to prove their worth.
There have also been calls for our government to address their obvious failings with regards to disability rights. The Tories have spent over a decade attacking disabled people. Their continued battle to deprive people of vital benefits has done untold harm. Purposely making it incredibly difficult for those with mental illness to qualify for support is intolerable. Their persistent refusal to acknowledge UN reports on the circumstances of disabled people in the UK. Along with long-standing inequalities such as disabled people being unable to live with a partner or marry without losing disability benefits. There are many urgent issues this government could address if they truly wanted to empower disabled people. This is very poorly executed lip service.
If someone wants to share about themselves, they will do so. If a person requires your assistance, they will request it. There are very few instances in which is imperative to know the details of someone’s disability. The exceptions, health & safety in the workplace, safely accessing facilities and so on can all be handled discretely & professionally. There is never a reason to intrude on a disabled person’s privacy. This campaign does the opposite of its stated objectives. Considering it is a Conservative initiative, no one is surprised.
* UK Disability Statistics Feb 2023.
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I have just finished the first episodes of the much awaited And Just Like That. I was excited for the return of the S&TC girls (I know). I loved the original. I even liked the slightly dodgy films. I was so happy to see them all again. And now, I am not ok.
If you’re planning to watch & don’t want me to spoil it, stop reading now. If you’re still here, how are you doing? Did you survive that first episode? I was so unprepared. Not until Lily started playing those foreboding notes did I suspect that Big was in danger. Those sneaky fuckers got me. As soon as the scenes started cutting from big on the bike to Lily on the piano; I knew. I didn’t want to accept it though.
I was really enjoying happily ever after with Carrie & Big. He’s still hot. Still colouring outside the lines. Still an old school romantic. Carrie is still Carrie. The writing is good. The shoes are better. It was all working until they broke my heart. This is not the forever I was looking for. How can Mr Big be dead? Why on earth did the writers think we could cope with this storyline?
I can’t stop crying! Listen, I always cry at the sad bits. Books, films, tv shows, life. If it’s sad, I cry. However, I think after 2yrs of a pandemic and all it brought maybe everyone’s emotions are a little raw. I find it increasingly difficult to view a whole range of media. The news is obviously a very rough watch. Fiction isn’t really much easier. The stress, fear, anger, grief has been turned up so high in real life that I really struggle not to absorb those emotions from fiction. I start feeling sad about a storyline and before I know it I’m flooded with a million real things to be sad about. Repeat for anger and so on. I’m beginning to think that Covid has left even more of a mark on me than I realised.
I’m wondering if others aren’t feeling the same. We’re all aware of the trauma covid brought. Huge losses & life altering changes. I’m not sure we have properly thought about the long term impact on our collective psyche. Lots of us were lucky enough not to lose a loved one. Many careers have not crashed and homes are maintained. A significant amount of people didn’t even get sick. Nonetheless, everything feels different. Also, the same. Is this chiming with anyone?
I feel like the world should have changed. So much of it hasn’t and that feels incompatible with where we are now. It’s hard to climb out of all those extreme emotions we’ve been swimming in. It’s even harder not to feel the need to revolt against those who still can’t bring themselves to care. I can’t articulate it perfectly, but I feel something has shifted. It could be wishful thinking. I hope not. It’s like the other shoe is just dangling from a single toe now. The people who least expect it might be about to get squashed.
Well, that was quite the leap. From a 90’s reboot to revolution in less than a 1000 words. I think that might actually prove my point; there’s a lot bubbling right under the surface. Anyway, in brief, whether you’re sad about John James Preston, the damage a global pandemic has wreaked or the craven shower we are governed by, I feel you. It’s hard to keep it in. You’re not the only one. Be gentle with yourself.
If you like what I do you can support me here or on Patreon.
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 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.
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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For August my charity of the month donation was a no brainer. Priti Patel’s deranged plans to criminalise asylum seekers entering the UK by crossing the channel has highlighted the amazing work done by the RNLI.
If you aren’t aware of their work. Lifeboats provide a 24hr rescue service for ANYONE who gets in trouble at sea. They also provide lots of excellent sea safety education, flood rescue & international work with people most as risk of drowning. They are voluntary charity organisation who risk their own safety to save others.
The Tories quest to criminalise rescuing asylum seekers at sea is abhorrent. It also has significant implications for RNLI volunteers who’s policy is to rescue any person in trouble without judgement. The organisations has received harassment from right wing anti immigrant groups. The idea that we should ask questions before saving someone from drowning is repugnant. Lifeboat stations need our support now more than ever. If you can please make a donation here.
If you would like to make a donation & stand a chance of winning a unique piece of art l have a tip for you. The lovely & talented roseylivesonaboat is running a raffle in aid of RNLI. You can win lifeboat themed needle point art. Full detail are in her latest post.
I’ve never been a shrinking violet. If I feel strongly about something, you’ll know it. I’m not scared of being noticed or to look different. All of which makes Fuck the Tories one my favourite brands.
If you haven’t checked them out yet, hop to it. Not only do they make fabulous radical accessories, they also support great causes. It feels like we are living in some kind of alternate political reality at the moment. I rush from disbelief, to rage, to despair on a daily basis. The ascendence of Boris to PM has only made matters worse. So, the new range of Fuck Boris necklaces are a very glittery outlet for my frustrations.
I know wearing a necklace won’t change anything by itself. It does make me feel a little better to express my disgust and connect with like minded people. I will continue to do everything else in my power to affect change. I hope you will too. Protest, contact your MP, sign the petitions, vote! In the mean time you can enjoy the satisfaction of supporting an amazing small business & voicing your opinionated loud and clear.
Something in the way she moves... 
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