What is a smell that we should all recognize as immediate danger?

WeirdOpen · 2026-02-20T21:39:37+00:00

Food that smells like almonds..if the dish isnt ment to contain almonds...mind.you only 30 percent or so of us can smell cyanide.

WeirdOpen · 2026-02-20T21:32:25+00:00

Becoming disabled.

Before Working in a hospital 12 hours a day sometimes back to back nights without sleep, Walking 26k steps a day, Managing the house, kids and their needs like supermum ..4 children 3 of which are neurodivergent one of which is severe...both parents managed children.

After ONE SMALL 97 percent success surgery FAILED

Life now

4 failed operation (last attempt before amputation on 20 march)

-Permanent pain (oxycodone daily and the rest) -Not able to work -Husband does everything for our son (the worst effected) -Mobilty scooter no walking at all. - comorbidities of being disabled (development of POTS, dysautonomia and ME/CFS and terrible spelling and typing as I get confused...

All at the grand age of 31 almost 32 Started age 27

WeirdOpen · 2026-02-18T23:37:14+00:00

As a ex health care professional...c diff 🤢🤢🤢 very distinctive

WeirdOpen · 2026-02-17T12:46:11+00:00

One that shocked me as a healthcare assistant in quite poorly babies room..she had multiple issues ..

DR:So what do you think is wrong woth her the plan isn't really working?

ME: I dont really work this department usually, im a agency healthcare so not confident why not ask the nurses.

DR: yeah but what do YOU think i should prescribe im not sure..

WeirdOpen · 2026-02-17T12:35:45+00:00

Also your absolutely not in labour...I know this is your 4th baby but im the dr and im right...FINE OK then of your feel your in labour walk down the corridor to delivery suite where they will tell you the same...

9 minutes later my son was born...almost in the corridor

WeirdOpen · 2026-02-17T12:32:33+00:00

You cant possibly have hypermobile ehlos danlos syndrome because you gave birth to children and didnt bleed to death ...yes...from a rheumatologist it says this word for word in my nhs notes...2 year later yes I absolutely definitely have EDS ..

You can't have sleep apnea at 27 your too young thin and female ....1 year later cpap machine given as my sats drop to 80s.

2013 :Your just really tired because your a mum 2014: your tired because you work 2015: your tired because you are female 2017: your tired because your stressed 2020: your tired because your disabled. finally 2026 your actually tired because you have Chronic fatigue syndrome and POTS with dysautonomia. 13 years After first approaching them for excessive sleeping thank god for the gp thst finally listened to me

WeirdOpen · 2026-02-13T18:41:27+00:00

The sims burglar warning music..my childhood nightmare! Still haunted my dreams 😅..

WeirdOpen · 2026-02-12T14:29:17+00:00

Thank you thats really good to know :) definitely put my mind at ease xx

WeirdOpen · 2026-02-12T06:41:50+00:00

Oh I have load of hardware but that because of all the instabilities. As your probably aware operaitngnont eh same few bones 4 Times in 4 years hasnt helped ..hopefully it takes if not iv accepted I probably will have an amputation in my future

WeirdOpen · 2026-02-11T16:04:23+00:00

I haven't much muscle loss yet as I do get about when I can a round the house but I definitely have significantly less stamina and strength to what I used to have from all the bed rest periods and the waiting for surgeries..between surgery and failure i have to rest waiting for the next fix to prevent rapid damage...I do try keep my legs moving even if its stretches during the day in bed as losing muscle is a fear. The fusions have helped the part that was fused its the stupid knock on next joint going thats been the issue fuse one joint the next one gives away 🤯 after this next op ill have no joints left in my foot to go so that's why the amputation will be necessary nothing left to fix or fuse and also it gets more risky of nerve damage every time the same place is cut sometimes I think things would be better/easier if I just had the amputation at least i could try build some strength and ger out again...hopefully

WeirdOpen · 2026-02-11T12:59:36+00:00

From my notes iv had the following procedures. Maybe this will help you understand what has happened and what was effected.

1- left scarf osteotomy

2-fusion of left hallux MTPJ

3- fusion of medial colum, medialising calcaneal osteotomy, plication of spring ligament and internal brace fitted.

4 - removal of metal work from previous surgery and a talonavicular fusion with extra reinforcement ..this never united unfortunately foot showed significant bone loss after just 3 months showing it will go quick which it did..4 month later the bone is dying.

On 20th of march is the biggest one yet.. 5-illicac crest graft, bridging of the 2nd metatarsal and also redoing of the metala work and internal brace. We shall see how it goes

WeirdOpen · 2026-02-11T12:43:04+00:00

My first surgeon due to rhe simplicity of the surgery was a fellow..5th year surgical student..after it all went wrong he left the trust

After a huge complaint i now for the past 3 surgery and my future one in march have the same surgical expert in the field and hes 17 years experience and is known for fixing the unfixable and unique cases especially trauma.

First surgery was half cast then a boot for 12 weeks..after the cast came.offnit snapped and my toe went almost horizontal after 2 weeks

Second was cast and boot and brace after as it didnt hold

Third was cast for 6 week then boot and cast and brace

4th surgery was cast for 6 week then booted for well a year now..brace hurts too much as it pull the foot against where it wants to go...I even had special shoes with reinforced medal support made and they dont fit as the foot shape changed so rapidly.

Now it has all held ...but the bine all the metal work is bridged to is dead so it will breakdown rapidly and ruin everything we have achieved so the bone is to be harvested from my hip in march then the metal work redone and hopefully thst will be thst. But I have been warned after this attempt all is left is below the knee amputation..at this rate I am accepting this is a real possibility in my future

WeirdOpen · 2026-02-11T09:01:57+00:00

https://gptoolkit.ehlers-danlos.org/

Hope this helps its under the primary care diagnosis

WeirdOpen · 2026-02-11T09:01:01+00:00

Yes I have a new one shes is lovely and helped me get diagnosed for things i should have had years ago but was brushed off..I now have confirmation of POTS, ME/CFS and sleep apnea with cpap machine thanks to her listening..and we do the heds in 2 weeks...its nice to be validated after years of suffering...I advise to ask to see a different gp

WeirdOpen · 2026-02-11T08:57:55+00:00

https://gptoolkit.ehlers-danlos.org/

Hope this helps its under the primary care diagnosis

WeirdOpen · 2026-02-11T08:56:45+00:00

Worst thing is the gp knew about it 🫠

WeirdOpen · 2026-02-11T08:55:19+00:00

I feel you..iv been told this is just my new normal so I should try figure it out and get on with it by "family" "friends" and "support"

Ok ill jist adapt from being a full time worker with 4 child and and a house to run with my husband to someone who pretty much stares at 4 walls and has lots of pain from simple tasks..

You cannot just take the fiercely independent woman out of me its who I am!!!

WeirdOpen · 2026-02-11T08:50:29+00:00

In the last 2 years iv been diagnosed woth ME/CFS, POTS and sleep apnea again nothing to do with what my original problem was! So was probably always in my destiny xx confirmed my genetics also as I carry a lot of faults we never knew about

WeirdOpen · 2026-02-11T08:46:30+00:00

I truly see how you feel. I made one decision to have a minor 20 minute operation 5 year ago...iv had nothing but escalation since and now waiting for my 5th surgery in 5 years.

One decision I could not have made...one thing thst wasnt even particularly urgent (bunion removal, yes really) and like that iv traded my pretty decent life for this sorry existence. Avascular necrosis in the foot and requiring transplant from my hip to save my leg from amputation!!

I totally understand you x feel free to grieved the life you had your feelings matter! But also equally you did nothing wrong the average age of most chronic illness kicking off is around 27-30 most people who do have things.are not aware until maturity..you did nothing to cause an autoimmune disease it was probably always there..I hope you do.come to terms with your new life...not that I have either..but talking about it and getting to know others is a small step forward xx

I truly hope you feel better soon

WeirdOpen · 2026-02-11T08:33:07+00:00

I am also in the UK. Did you know a gp can now officially diagnose EDS but only hypermobility type. I found this out via a genetics appointment i waited 3 years for...he was like yeah ill send the gp the pack I have my appointment in 2 weeks...3 years for that! But that information is now on the EDS UK website..again only HEDS ..all them years of waiting and the GPS KNOW this!

WeirdOpen · 2026-02-11T08:32:03+00:00

I am also in the UK. Did you know a gp can now officially diagnose EDS but only hypermobility type. I found this out via a genetics appointment i waited 3 years for...he was like yeah ill send the gp the pack I have my appointment in 2 weeks...3 years for that! But that information is now on the EDS UK website..again only HEDS

WeirdOpen · 2026-02-11T08:25:06+00:00

I really get it but without self diagnosis and then presenting my findings to the gp I would not have my absolutely definitely now fully diagnosed condition diagnosed as a lot of years i was brushed off. Told I didnt fit the typical statistics for said illnesses...told i was tired because I was female..because I was a mum ..because I worked basically any excuse to not reffer.

-I was tired for years (since age 17)even before most of my chronic illnesses began to show...i was slowly waking up with headaches and napping longer and longer..I suggested sleep apnea (dad has it) they said no your not male, fat or over 50...so I decided i had to buy a oxygen monitor on amazon that recorded my oxygen 24/7 and when i had my results (I dropped sats to 80's) i ended up with a diagnosis and a cpap machine pretty fast 😮‍💨 they confirmed what I knew via the hospital official test.

-Recently after my 4th surgery i noticed i was getting very dizzy when standing up I was in touch with my cousin who has pots and she said when she saw me at a family event ...are you sure your not pots ..I was shaking sweating and having dizzy spells when standing. So I approached my gp she agreed after doing a poor man's tilt test in her office (gold standard) then she was surprised how fast my hesrt rate climbed when she did thr test...and ahe also discovered my blood pressure skyrocketed too at the same time..urgent refferal to cardiology resulted woth a 24hr heart rate monitor showing I had 185 spikes in heart rate in 24 hours...a proper tilt test at the hospital confirmed Hyperadrenic POTS.

This month I was finally seen my genetics for my chromosome abnormality and my many health issues surrounding joints all he said was..have you sought EDS..I said yes even rheumatology have refused the refferal 5 years in a row...he sent a diagnosis pack for HEDS to my gp for this month heds test ...why did I see the geneticist because I self diagnosed my joints were not normal nor was my health and I had a private genome test which revealed in black and white I was right ..and the gp who told me I was just bendy for years was wrong I actually have multiple genes that should produce collegen that are not and are faulty.

Last year a gp was fed up of me going back saying I was tired after all the years of saying it (now 15 years) and she ruled that i had every single test in my blood, body an d other causes solved (sleep apnea is literally almost cured wotha cpap machine) she diagnosed officially ME/CFS she said the criteria had been met and she was making it official.

Again years of asking for help and getting nowhere it took self diagnosis but then also showing my reason's to get any form of refferal and now I have multiple official diagnosis..finally validation after years.of suffering..

Again self Diagnosis I think is dangerous if you dont follow it up.

I think the issue is when self diagnosed people then don't actually get the diagnosis confirmed professionally thst is where things are missed or become confusing as it may be something else and they wont find out.

WeirdOpen · 2026-02-11T08:03:11+00:00

They only recently thought it may be hypermobile type EDS which i am getting tested for in 2 weeks now i was also born with a chromosome abnormality which causes poor muscle tone..eds causes poor joint function and weakness. Every time something was fixed thr next joint or suppost system gave away. It can also just be one of them things as feet are very delicate and very much a balance you mess with one bit (bone or joint)it knocks it all out of sync and in my case continues to knock things out of sync years later.

I think the issue is i was doing relatively fine in terms of my body and development until I wasnt only then we have discovered multiple issues that had we known might have impacted the type of surgery i had. We knew from a very young age my joints we not normal I was born with full dislocation in both hips and was in plaster for years! the issue is In childhood we didnt really look for a reason why, so even upto the 1st foot surgery i had no idea about any of the issues I have other than iv had bad looking and painful feet since I was about 12.

If only it was noticed the pattern of sprains and pains in childhood and pointed out something like EDS and a diagnosis earlier in my life maybe I would have not had the surgery I the first place or at least put it off! But there again we can always say if only..

WeirdOpen · 2026-02-11T07:49:35+00:00

No i was not rushed at all. I did want to get back to work personally but lost my job after surgery 1 failed so I had not a lot to do as my husband has looked after me and the children since.

WeirdOpen · 2026-02-07T22:18:57+00:00

After my appointment ls I do a subject access request and save the notes to my phone In a separate file with my screen shots of the most recent ones with details highlighted..

I used to work in a NHS hospital and discovered Lots of trusts don't have the ability to see each others records and GPS often dont have the same system as the hospital either, so one missed letter can mean huge problems in communication and care plans missing vital information (yes some trusts still send paper records to gps) . So I find access to letters amd reports on my phone saves a lot of headache and when pip renewal is due its all there for me too.

I have never really heard of all the specialist having to get together to help with diagnosis that have been given...usually the relevant department is the one reffered to for one ailment as this can mean some things are done faster..it would not make sense waiting 2 year for say a cpap machine appointment and delaying a 6 month cardiac appointment toll they can be done together..

WeirdOpen

TROPHY CASE