spoonielivingfree
Nobody screws with somebody who's legally blonde
Hannah (UK) INFP Age 23
recovering from various mental illnesses, and Chronic illnesses (ME, Migraines, Occipital Neuralgia, EDS, Fibromialgia and undiagnosed issues)
Masters student
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Feelings about Rishi Sunak's Welfare Reforms
Rishi Sunak proposed new welfare reforms on Friday and it’s fair to say the way that they were presented has further perpetuated the public belief that everyone on benefits is a scrounger. That we’re just a bit lazy, that we’re playing the system. Whilst of course there are a few people playing the system it’s not the majority. The worst part about these suggested reforms is actually the amount…
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#Benefits#chronic illness#Chronic pain#EDS#fibromyalgia#Life#ME/CFS#mental health#Personal#PIP#Social security#spoonie#Universal Credit#Welfare state
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Reflections on the PIP Process
My PIP review was successful, and my rate was actually increased so I now get the enhanced mobility component.
This was a massive shock to me to be honest because I don’t see my mobility being that bad. But after reflecting on it, I realised it is actually that bad. I struggle to walk around my house due to pain, weakness, dizziness, and upright intolerance that keeps me largely fully or…
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#chronic illness#Chronic pain#Disability Benefits#EDS#fibromyalgia#Life#ME#ME/CFS#mental health#Personal#PIP#spoonie
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Life as a wheelchair user isn't Bleak
There’s a clip of a Nicolas Hamilton video floating about on social media in which he says life in a wheelchair was bleak and the way the clip was clipped insunuates that people who use a wheelchair who can walk are just lazy. Whilst for him this is how he felt (internalised ableism is real and we are not exempt from it) and for him it was possible to not need to use a wheelchair this isn’t the…
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A somewhat chaotic health update
I went into 2024 hoping it would be a calm health year, but apparently calm isn’t an option in my life!
Over the last month and a half I’ve found out I have Craniocervical and Antaloaxial instability so now have a hard collar to wear during limited circumstances (i.e when on trains, in cars, on busses).
I have also found out I need my wisdom teeth removed and have been referred to oral surgery…
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Chronic Illness is time consuming
When you have chronic illness, it often results in extra tasks.
Appointments, recording symptoms, collecting prescriptions, dropping off samples, printing headache diaries, making/answering medical or benefits-related phone calls, requesting repeat prescriptions, doing physio, filling out various forms.
On top of all these extra tasks, we have limited energy and fewer usable hours in a day…
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There is hope in the next generation of medics
Today I had a GP appointment with a foundation doctor.
In the UK this means being in the first 2 years of practicing after medical school.
Foundation doctors do tend to have more time with patients, as they are still training and maybe this is why in a GP setting it seems like they actually care. They often aren’t as time pressured to the 10-minute appointments as fully qualified GP’s. Let’s…
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PIP Review Assessment
I feel like benefits assessments get more traumatic the more you have. Or maybe that’s just because my health seems to be getting more and more complex. New diagnoses, new waiting lists, some things improved, some things worsened. I didn’t even write every single diagnosis on my form because I knew it would be too much to go through, and things like costochondritis and my eye problems have…
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Why people think disabled people are faking
When you’re scrolling through social media, especially Tiktok, think about the illness fakers’ Reddit and think back to shows such as Benefits Britain, as well as looking back to experiences in life it becomes clear that a lot of the time the automatic thought is that someone is faking their disability, or making it seem worse than it is for the perceived benefits. If someone has a disability…
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#chronic illness#Chronic pain#Disability#Disability hate#Disabled#EDS#fibromyalgia#ME#ME/CFS#mental health#POTS#spoonie
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Thoughts on generation sick-note
If you live in the UK, you’ll likely know that the media has been reporting that more people aged 18-24 are out of work sick, compared to older generations.
Now, I’m 26. I’m a couple of years older than the age range reported and I’m currently not working due to ill health. And I hate the media’s demonisation of young people, the media’s demonisation of disabled people and the insinuations that…
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On the Great British Benefits System not Respecting our Time
This morning I was meant to have my PIP assessment for my review. It was a phone appointment and being the neurodivergent person I am, I ended up in anxious waiting mode, unable to do anything, getting more anxious as the minutes after the appointment time ticked by and I still hadn’t received the call.
It got to 35 minutes past the appointment time and I got a phone call saying the appointment…
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#Benefits#chronic illness#Chronic pain#Disability#fibromyalgia#Life#ME/CFS#Personal independence payments#PIP#spoonie#Welfare state
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On going undiagnosed
The NHS has a really nasty habit of dismissing and gaslighting EDS patients. Not seeing beyond the norm and thinking further.
The NHS has a habit of not properly diagnosing EDS and the various issues that arise as a result.
Today I went to a specialist physio about my EDS head to toe body. She decided due to the extent of my neck and neurological symptoms + head pain that should be the priority…
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#aai#cci#chronic illness#Chronic pain#Cranio cervical instability#EDS#hEDS#Hypermobile Ehlers Danlos#ME#spoonie
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On non-epileptic Seizures
I have non-epileptic seizures, I’ve been having non-epileptic seizures for a few years to varying degrees of frequency. It was initially a rare experience that I just brushed off. The first time, I was in public and ended up in A&E but for whatever reason investigation wasn’t done besides making sure I was medically stable after the fact. So I didn’t think it was important.
They became more…
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#chronic illness#Chronic pain#Disability#EDS#FND#ME/CFS#NEAD#Non-epileptic seizures#Personal#Seizures
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The dreaded PIP review
I got a text through the other morning with an assessment date for my PIP review. I always find it wild that they don’t give much notice for these as if we just have to bend to their every command. The time does work for me for this assessment, but I can imagine it could be hard for people who are in work, especially those in traditional 9-5s to make an assessment on 2 weeks’ notice, depending on…
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#Autism#Benefits#chronic illness#Chronic Migraine#CSF Leak#Disability#Disabled#EDS#ME/CFS#PIP#Social security#Welfare state
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On not wanting to talk about chronic illness
I find my parents don’t understand chronic illness. They also don’t understand and even after me trying to make them understand they still don’t get it. They don’t get that my body has limitations. That I can’t just choose to tidy my room. Actually, I can’t keep it in a reasonable state at all because pain, vertigo, and fatigue say otherwise. That I don’t climb regularly anymore because between…
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#chronic illness#Chronic Migraine#Chronic pain#EDS#fibromyalgia#H-eds#ME#ME/CFS#mental health#spoonie
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The problem with the biopsychosocial model of disability
The biopsychosocial model is a model of health and disability that states that illness is a result of interactions between a range of factors, including biological, psychological, and social interactions. On the surface this makes sense. Of course our conditions and the impact of them aren’t purely physical. Society isn’t accessible which is a social factor increasing our level of disability, and…
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#Biopsychosocial model#chronic illness#Chronic pain#Disability#Disabled#EDS#fibromyalgia#FND#ME#ME/CFS#Models of disability#spoonie
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Thoughts on Unsolicited Advice
This is something I think everyone with a chronic illness experiences multiple times over.
“A friend of a friend of a friend tried this and it worked for them”
“I saw this on the news maybe give it a go”
“A distant relative swears by this”
Today my mum is trying to make me try ear seeds despite the episode of Dragons Den that a specific brand was featured on has been taken down and they are…
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#chronic illness#Chronic Migraine#Chronic pain#Disability#Disabled#EDS#fibromyalgia#FND#H-eds#ME/CFS#Personal#spoonie
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Fuck the NHS (or certain professionals within it)
Sometimes I feel like I am fighting a losing battle with the NHS
Malpractice and discrimination is rife
The system is crumbling under pressure and some clinicians are less than capable of dealing with complex patients.
Today I received a phone call asking me to book a GP appointment to go over advice received from the chronic fatigue clinic.
I looked at that advice on the NHS app and the…
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