Essentially Samantha

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...

  Overnight, I recognised that my throat was burning, not like heartburn, but like drinking a spirit and the hot warmth that spreads throughout, type of burn. My thyroid has always been dodgy, and recently I had an abnormal result, which meant I had to decrease my Levothyroxine. The other day, I felt so fatigued in town that I had to get a taxi back home. Then, whilst I was cooking chicken, I felt like I was going to faint. I have now bought a manual wheelchair. This should do me until I can afford an electric wheelchair. So I walked to the GP this morning, who checked my thyroid and agreed to run a blood test to see if anything is going on. I am being tested for Hashimoto's and Graves' disease, also. GP also said she thinks I have a virus, and she is running a full blood panel. I am having the blood test this Saturday. If my blood tests come back as normal, then it looks like my Fibromyalgia is worsening. I have discussed with Barry that we need the electric wheelchair asap, b...

  Maybe the real problem with society is that people don’t think disabled people should be allowed any joy. They have to stay in their homes, moping, being sad, and not having any fun. Because everyone else is really fucking miserable. Therefore, we have to be too. And this is why people have so much of a problem with what disabled people spend their money on. “ If they are spending my hard-earned cash, then they need to be miserable” “ They can’t have nice hair or lashes” heaven forbid a disabled person makes an effort with their appearance. “ They can’t drink or smoke” but what if that is a coping mechanism for them to stay alive? “ They can’t have holidays! I can't afford a holiday, so why should they get one!” People forget that PIP is not an out-of-work benefit; it is there to cover the costs of things associated with disability and independence. People also forget that disabled people may have a working partner, families who give them money, inherita...

 It's 5am. The sun is shining with an orange-red glow on my net curtains, I had to capture it for you. I grabbed a coffee with collagen in it. Without the collagen my joints really hurt. Then I headed outside to water my herbs and get the washing in.  Its hot out there already in this heatwave we have been experiencing. Yes its been great for getting outdoor work done, but it is exhausting as there is little breeze and my fibromyalgia plays up big time in the heat. Not to mention I could go toxic on Lithium. Can't recommend this book enough! Really good read if you want to do any type of writing. There are no secrets or rules. You have to want to write like you not someone else. I have found this book invaluable. When I sit down and take a painkiller if my back is hurting too much, I read this book. It helps. With fibromyalgia, it can flare at any point. I had to catch a taxi home the other day as it felt like wading through waist-high wet sand with blood pouring out of the so...

  Well, well well. So it turns out that for the first time in 15 years, I am now mentally stable. My new Psychiatrist is meeting with my old Psychiatrist tomorrow and is going to brag about how she finally got me stable after only meeting with her 2-3 times!  I can just see my old pdoc's face. He tried so hard with me, but nothing worked. We managed to work out that it is a combination of Lithium, Aripiprazole, Clopixol and a measly HRT patch that finally stopped the auditory and visual hallucinations. My mood has balanced right out as well. It's nothing short of miraculous. I'm so grateful to my old pdoc, as he never gave up on me, but my new pdoc is a Godsend. I think being a woman, she was willing to try new medications and routines with me. It paid off as I now don't react to situations overemotionally. I don't burst into tears at any kind of sadness. My medication allows me to step back and rationalise what's going on and allows me the time to react sensibl...

 So here I am with my favourite cherry brandy ice lolly, after my husband chased the ice cream man down like Mo Farrah. I have an electric fan on me, and I am still too hot. I probably am suffering more due to Perimenopause. Rotten creature and foul thing that it is. My son is at home with me, and he has another fan on him. The temperature gauge says 27 degrees. It is officially summer, and I hate it. I am more of a winter person. If it is cold, you can always add layers and warm up, but if it's hot, you can't cool down so easily. I am also on a lot of medication that causes my body to not regulate temperature well. I love Autumn. it was when I was born, and I feel much better on rainy days.  The hot weather also means that I could go toxic on my Lithium. It's not a pretty picture. Shaking, stomach cramps, blurred vision, loose stools. Even for some cases, a trip to the hospital.  Summer is not fun for everyone. It has been said that domestic violence goes up in the summe...

  Last time I blogged, my family had a nightmare of having to find accommodation immediately, as the property we were in was being sold from under our feet. It was a desperate situation. Thank God we have a God of miracles. Barry found us a 3-bed semi-detached in Southampton. We moved last July and have been busy sorting out our rushed, hectic move-out. We still have not put one of the beds together. Paul is being home educated and is happy at this new place. I like it here too. I have a back garden, and I have just put up a walk-in greenhouse.  I dropped a toxic friend from my life permanently. I twigged he had attracted monitoring spirits to watch me 24/7 due to his jealousy of me being successful. Every time I did something good and wholesome he would find fault, slag me off, and do down my achievement. He was always foaming at the mouth when things were going wrong. He loved my homelessness situation telling me that I would end up back in council emergency accommodation, m...