My mammogram experience
22.11.2025 20:03
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Making Covid Tests Fun
Each week my PAs send me pictures of their 2 covid tests - that would normally be 10 really boring photographs … some have been creatively adding some cheer to the dullness. I love seeing what they come up with!!!
More work on making a bipap headcap
I’m designing a new headcap that fits without horrendous pain from pressure sores, mask leaks and neck pain. To keep a mask fixed to your face, if you use CPAP for sleep apnea or BiPap for ventilation, you need headgear. Masks come with these headgear/straps…
I made it to age 50 despite what Drs said.
People with my type of dystrophy are affected very differently. I have a severe form. I was diagnosed at age 7 and the medical books said “Dies in their teens”. This was not good news. I got to my 20’s and the specialists said “Maybe 30”. I got to 30… and…
Vaccine woes this year
There are two new strains out at the moment, and Covid is on the Autumn increase (up 22% on last week). In their wisdom, NHS in England decided in its summer review. For the first time since December 2020, when Covid vaccines were first introduced, people under 75 and those…
today that, this autumn, myself and my PAs (care team) are only eligible for the flu vaccine and not Covid. We can pay privately at about £80-100 a shot. To protect me, husband and care workers that would be £700. I’m hoping my GP might sneak me a shot. 1 PA is already off work with Covid this week.
So here’s the thing. I’m not immune compromised BUT I can’t cough, swallow easily, I need a ventilator to breath with a clear nasal passage. The slightest ‘mild’ infection which would make you feel tired/weak can render me totally unable to move (so I can’t eat, drink, talk… poop!!). I discovered
Today also featured going through the calendar and completing the hours for my 5 PAs before submitting it to the payroll. Tomorrow my newest returning PA continues her training and learning to get me up. It usually takes 3-6 months to learn how to get me up and then another 6 months to embed.
unusual. I wish people would be considerate when ringing door bells. One ring is enough!! Not what you want after just 3 hrs sleep. At least that’s done now for 6 months.
Today we knew someone was coming to inspect my NHS sling/lifting vest. Got woken up by the doorbell going furiously. My PA showed them my vest and they said they had never seen one like that before apparently and weren’t totally sure how to inspect it!! Same as any other “sling” even though it’s
Well, tried the age verify thing … won’t accept I have a credit card and doesn’t recognise my face as I wear a ventilator mask. Bravo @bsky.app #accessibility
Final homework for the day - my OT needed some info for Wednesday to present a case to CHC for them to pay for a special mattress assessment. I was previously turned down by Oxford for a specialist assessment. It takes on average 7 hours to lay me in a bed each night at the moment.
1 isn’t being made anymore so my PA will have to get a new fit test (£60) … and the 3rd type is sold by various companies but no use by dates listed so had to email them direct to ask. I think the company I ordered from is still sending me the expired face masks though. Sheesh. #NHS
Spent 2 hours trying to look for FFP3 masks. I had ordered the 3 types from a link suggested by my funders - then after paying, they emailed to say two types had expired use by dates and 1 wasn’t the right size. Getting a refund. 2 hours of googling and found one type on eBay and no others..
Feels like yesterday it was 2024’s day!!
NHS’s birthday and I’ve spent today and all week trying to sort out my NHS complaint to the health ombudsman. So many failing yet the form allows so few words to convince them to take on your case. 2 years of hell won’t fit into 3 small boxes. It could take 7 months as they have a huge list. #NHS
worldgone2pot.wordpress.com/2025/06/20/a... Why I oppose assisted dying.
This #ChangingPlaces Toilet Awareness Day (19 July), we’re celebrating 20 years of progress!
Vote for your favourite CPT in England, Scotland, Wales, or NI bit.ly/3H1SWkJ
Deadline: 30 June.
#ChangingPlacesToilets #CPTAD2025
I’ve been so busy this month. Yesterday was World Home Mechanical Ventilation Day #WHMVDay . Here are some of the masks I am using or trialling currently for sleeping in bed and my wheelchair. Only the one in the middle picture is working at the moment for me.
Today also featured arranging holiday cover for next week. A short text to one of my PAs who will be covering. #PAAdmin
My husband had to fix part of my armrest today as I have a home made second armrest outside the original as my body is skewed from scoliosis and I drape over the side.
Ventilator humidifier plastic base from 2016
Last week my humidifier broke/cracked from age. This a vital part of my ventilation set up as my throat and nose can get so dry it bleeds. The hospital asked for some photos and I did get a replacement pretty quickly… What I didn’t expect was a refurbished one that is a year older than I had. 😫
In my local areas egg packers get paid over £16 an hour and a free meal. The maximum the NHS pays complex care workers like my team, to support people living at home, is £15 an hr. It’s appallingly low and means people like me find it impossible to recruit. #NHS #Disabled #UK
They are a living hell for me. Especially the last 2 years. I have to depend on them for complex medical care … just cruel and 100 % unjustifiably budget driven. Totally dehumanising, disregarding human rights or meeting their Equality Act Duties.
April the 1st. CHC told me I can no longer use my funds to buy pads … after 8 months of blood sweat and tears (and a formal complaint). They clearly lied to me making out they may continue to fund if I got a letter from the continence service. This is how it impacted my life.
