Essentially Samantha

Lunch today: corgetti ribbons. Red onion, mozzarella torn, chickpeas, fresh pesto, sea salt, cracked black pepper. 1st week off the antipsychotic injection i have been on the past 5 years. Runny nose and sweating, nightmares and intrusive thoughts. Lets hope lunch gives me enough energy to go sainsburys to do a birthday shop for friday.

  I already knew of Jason Arday. I knew his story — the autistic boy who didn’t speak until 11, learned to read and write at 18, and went on to become an academic, becoming the youngest Black professor appointed at Cambridge at just 37. What I didn’t know was what had been unfolding around him recently. I hadn’t followed the headlines or the scale of the public conversation. So when I heard yesterday that Jason had died at just 41, I started reading. And honestly, it was heartbreaking. Because at some point, online scrutiny stops being scrutiny. Jason’s family have described him as having endured a “campaign of sustained abuse” for more than three years and has asked for it to stop. But, when did being talked about publicly start meaning someone loses their right to be treated like a human being? The internet makes it feel like individual actions don’t matter. “ I only shared it.” “ I only commented.” “ I only made a joke.” But thousands of “onlys” still land ...

This does not make life any easier. Showing up as a coach impacts lives in unexpected ways. People may assume you know what's going wrong in their lives. Or that you have this great, profound insight. Truth is, being a Christian coach is humbling. It's about getting me out of the way so the Holy Spirit can do Her work. Rooting my work in biblical principles and not wavering off the narrow path takes practise and patience. Showing up when needed, listening and responding prayerfully are sometimes all one can do in this hostile world we call home. I'm humbled to be called as a coach, and I will do all I can to honour the role.

  We don’t force positive thinking. We practice seeing without rushing to name it. Breathe in. Don’t label the out. Sit in the room before you decide if it’s "good" or "bad." Let the flame be small enough to light everything, not just the target. Because the world is not waiting for you to arrive. It is arriving, constantly. And the version you get depends on the version of you that’s looking. Energy flows where attention goes. Point your attention at lack, you get more lack. Point it at the between, you get the between. Point it at the body, you remember the body is not a peripheral. It’s the lens. You don’t create reality by wishing. You create it by choosing, even for one breath, how you will see. And then the world, obedient and cruel and beautiful, shows you exactly that

  It happens most of the time I get on a bus. Mothers with prams in the wheelchair space sat down on the seat and on their phones. I have had dirty looks and comments as the bus driver tells them to move their prams. One woman refused to move, and another passenger had to intervene. Eventually, after realising the bus driver was not going anywhere until she moved, she actually gave up the space. She claimed that she thought I could use the non wheelchair space of the bus. Even though on the window it asks people to give up the space for a wheelchair. To sit anywhere else is dangerous as it does not have the room or backspace.  I get it. You need to put your pram somewhere, and the wheelchair space is more roomy than the other side of the bus where the fold-up seats are. However, what you don't realise is that wheelchairs take priority. There is nowhere else for a wheelchair to go. We only have one option on a bus, whereas you have quite a few. You can fold your buggy up and si...

 Story time. Living with an invisible illness such as Fibromyalgia is very difficult. The public does not understand the suffering from an illness they cannot see. Medical professionals think it is all in our heads because there are no tests for Fibromyalgia. Friends and relatives grow exhausted at plans that keep being rearranged due to fluctuating pain or fatigue levels "But you were fine yesterday?" is something we hear a lot. Yes, I may have been fine yesterday; that is because I hid my pain level, and today I am paying the price. Fibromyalgia is a lifelong chronic condition. It is characterised by long-term, widespread chronic pain, which can be severe in nature and chronic fatigue. Brain fog, IBS, Lack of sleep, and dizziness are just some of the various symptoms. There is no cure. Treatment is multidisciplinary and experimental. There are no specific tests for Fibromyalgia. The practitioner treating you asks you to do a pain diagram over a specific period of time to de...

  Whenever I go to Portswood, it never fails to stop me in my tracks by how much litter is just everywhere. The bins are always overflowing. Portswood is neither inferior nor superior; it just is. Residents are more than a little ticked off with the protests from the far right and far left, and the police presence that goes with that. The traffic is always hectic when these protests take place, hard to navigate when all you want to do is pop to the shops for a quick bite.  Portswood has a high number of muslims in the area and as such most eateries are halal. Problematic for many people, especially Christians. There are some churches within Portswood, but I have never stepped foot into a charismatic flavour known as Victory church. I hear they are popular, but I am more of the contemplative type.  There are some good businesses on Portswood High Street. They have a large Sainsbury's, with an Argos inside. Shame they never have anything in stock. A popular Waitrose serves ...

Fruit is ripe, thick apple slice in the sky The moonlight shines out, cinnamon twist in the hand Toad grips and slides about, a sparrow a song Madness is never far, and never so wrong Make it make sense when I can Move your body about, a dance or a jive Spinning around treacle jumps on the inside A sliver a sprite, a bungee jump makes it right Freedom of air through my hair And when the wind rushes it gasps A tumble a fall Trying to make sense of it all And the moment is ripe Cherry pips on the tongue A laughter a song I used to know what madness was, I was wrong.

  Barry and I took a wheel by the river today. I went to pick up my new glasses, as you can see. It was stressful getting on and off buses. I'm getting nauseous travelling backwards in the wheelchair space. It is a 45min journey into town on the bus. I send emails, text and read to pass the time. Things would be easier with a car. In other news, my son starts on an antidepressant tomorrow. I am praying it goes well and he doesn't go manic, as that would indicate Bipolar disorder. I am saving up for a power chair so I can be independent. I'm frustrated about relying on Barry to get me around. Bless him, I appreciate him, but I need my independence. I currently can only go out when Barry is free. That's not very often, with more hours at work being offered. Pleased to be out today, and on the way back we wheeled along the river. It's still unusually hot; it does not feel like Britain. Roll on Autumn. My favourite season. Although I am not looking forward to wheeling m...

  Dynamic disability: A health condition where a person's symptoms, functional abilities, and energy levels change unpredictably. These fluctuations can shift from day to day or even within a single hour, meaning someone might use a mobility aid or need rest on one day and feel able to walk unassisted the next. The amount of suspicion someone with a dynamic disability faces is unreal. Even GPs who really ought to know better join in with the disbelieving remarks in patients' notes. I was criticised for getting out of my wheelchair unaided and lying on a couch for an examination. I never said my legs were broken; I said it was due to chronic fatigue. I do wish the public would stop fixating on what is or isn't broken with someone and instead focus on real things that are broken and need fixing, ...like the M frigging 27.

Christ He crawled up from the dirt One mother no shirt and he kept all along the stars were his song And by each passing time was no reason nor rhyme he carefully concocted the sum that lingered like voodoo plum so you can scratch where you are wrong For you to be his song So he kept on with digging No sense in his winning the layers were peeled back Nothing was called to his task the rosehips and meadow sweet burned from the sky the stars were his eyes drawing breath from on high the acorns, the chestnuts scattered on the ground the squirrels, the magpies leaping all around the crunch of the fauna under an unsocked foot the whispers, the urgency riddled with muck for you to be stripped bare no sense in the notion to share it was his mother's due care he is not pyrite masquerading as gold his story will always and forever be told he joined in with humanity and coughed up dirt never tiring, never shaking, fully alert shaking the ground like a dream ...

  The moon at 3am over Southampton, UK. Tower Block The 18 bus trundled down the cobbled Millbrook streets Cold and wet, begrudgingly going to our home We tried to stay out; nuisance neighbours kept us awake Nothing the council could do, just hint at a move for our sake The cold, thin chipped paint peeled off the railings in the block The smell of cat food and roast potatoes was always a shock Anti-social behaviour in the block was rife Loud pumping music was just a way of life The lift was out, now to tackle the stairs with a pram People pushing past you, they don't give a damn Rubbish bags collected, the postman is due Not much to hold onto, faith was for the few Paul is now crying, this is no way to live Cold and hungry, carpetless and curtainless nothing would give The woman opposite our flat starts to scream, nothing new I pull the duvet over my head, this life should be only for the few The strange sound of drilling always at 6 o'clock The neighbou...

   Some serious trolls on the internet like to see the downfall of disabled people. Here is my simple message to you.  Today I received an Anglican Rosary. I have a book about praying the psalms with a rosary. I find it helpful to use alongside contemplative prayer.  And so one of my pairs of stilettos turned up. I have ordered 4 pairs to give variety to the experiment. I ordered a size 6, which are too big. So I ordered 2 more in a size 5. I attempted to stand in them, but oh no, I landed on my backside. I need to be able to at least stand in them in case I need to get up quickly. Any tips? For those who do not know. I am wearing these heels in my wheelchair. Please see my previous post in full. It is to challenge what people think about wheelchair users, whether they can walk and what that means. Is someone undeserving of a chair if they can walk short distances?  Are wheelchairs only for paralysed people? Let's challenge the norms!

Bought a pair of leopard print stilletoes to wear on my wheelchair. People like to assume you dont need a chair so im giving them something to really challenge them. Can she walk,? Cant she? Disabled people dont wear heels,? Who says they dont? What does a wheelchair user wear,? Is there a acceptable public dresscode? I also dont want to be invisible in a chair. People speak to Barry Waldren when we are out and ignore me. Except when i get on the bus and people have to move to let me into the wheelchair space. Lets open up a conversation that shows a lot of us are ambulatory wheechair users. And that its perfectly fine to use a chair if you are not paralysed. I will record the results on this blog

  So today I decided to send the most important email of my life. I emailed the Prime Minister, Andy Burnham. I mentioned that God is reasonable and wants to listen to us and react accordingly. I asked Andy to listen to disability action groups. We face utterly vile discrimination. Years of Tory propaganda demonising the disabled as benefit scroungers. It needs to stop. Cuts to benefits need to stop. We go through degrading and dehumanising procedures and reviews just to get a minimal financial benefit, which in itself is not enough to live off. We live in fear every day that this financial support will be withdrawn. Fraud is so rare, and it's amazing how everyone seems to know people faking illness for benefits. Amazing still that these people are never reported. In other news...I passed with a distinction a course that I found difficult and rewarding. From quantum physics to mysticism. Mental health users need to keep the brain from fogging over. It also helps distract from the w...

GOD FORBID A WOMAN HAS THE BODY OF A WOMAN: This is the thing when women come into the spotlight: their bodies and looks are judged more harshly than anything else. Marie-France has been dragged over all social media platforms for the dress she wore, her figure, and her face. Am I a fan of her husband? No. But why do we treat the wives and partners of politicians like they’re only around to look good? From what little I know of Marie-France, she has undergone a double mastectomy, birthed three children, and is a successful businesswoman. How dare people reduce her to nothing more than her looks? The patriarchy is alive and well, and to see fellow women joining in on ridiculing her is fucking disgusting.

  So I had bad blurred vision. I was worried it was my new medication. However after spending a afternoon at the opticians and a really intense examination covering all bases, we have established the visual disturbances are due to migraines. Im really pleased as I thought my eyesight was getting worse. I do however have two new pairs of glasses to pick up. I am both deficient in near and far sightedness, and my eyes are straining to focus.  Meanwhile I had a new tablet. I tried to set it up. So did my husband and son. It was basically a brick so I am getting a refund. i raised a ticket with the company. I now have to wait for the refund. I’m old enough to remember when buying a ticket just meant buying a ticket, not downloading an app, creating an account, verifying your email & sacrificing a goat. I am now heading over to Currys to purchase a brand new tablet. I am done with second hand!

  The 144,000 spoken of in Scripture has become one of the most misunderstood ideas in modern spirituality. Many New Age teachings reinterpret it as a frequency, a vibration, a state of consciousness, or an identity that almost anyone can claim. In doing so, the number loses its weight. It becomes symbolic of personal enlightenment rather than a profound calling. Religious interpretations make it sound like only 144,000 will be saved on this earth. Interpretation matters. I see it differently. What does “saving” actually look like? If you think it means you’re going to be whisked away and safely placed in heaven while billions suffer - this doesn’t sound like God. Being saved means getting “unplugged”. I liken this to the matrix concept. But as seen in the movie, being unplugged is often unpleasant. It’s not what you thought. The reality is not as glamorous as the illusion we once thought was real….which is why some who are unplugged desire to go back so they can enjoy life ag...

"PIP should be paid in vouchers"  I'll explain in detail why this is a bad idea, but can I ask why all the solutions to the imagined mass fraud is to hurt disabled people more in the process? I'm sure some people think they're doing the right thing, many probably understand fine well it would hurt disabled people and they have forgotten they can become disabled at any point in their lives.  Instead of starting with how it would hurt us (disabled people) I'll explain how it would hurt the state.  It would cost MILLIONS to set up a whole IT system, set up partnerships with business, the amount of civil servants that would need to oversee invoices would just be immense. It would cost more than it would ever be intended to save, sort of like the current assessment system that sees tax payers cash endlessly going to tribunals because they've refused a disabled person help, 2/3rds of all claimants that take their case to full tribunal win. It again costs the sta...

 My new wheelchair was ready for me to work with, just in time too, as I had to go to phlebotomy to give a blood sample. As I went past on the bus, I saw an old friend whom I needed to clear the air with. Today, however, was not the day. I managed to have a successful blood test; the nurse got my vein in one go. Very happy with that. On the way to Boots the pharmacist, I stopped off at the park with Barry for some refreshments. I picked a big bottle of water, which came in extremely useful later on in the day. The park was beautiful, and everybody seemed to be in high spirits. My new wheelchair goes over cracks and dips in the pavement without flinging me out of the chair. We even went across the grass! Onwards to Coffee 1 in Southampton City Centre. I quickly messaged Paul on Discord and drank my Chai. I went to Boots, picked up a photograph and then we headed home....or so we thought. Halfway up the high street, Barry bumped into a homeless woman whom we both knew. She was lovely...