2021willbemyyear

we’re 4 days in and look where we are, about to get locked up again! 2021 will still be my year, it has to be better than 2020 surely. it just has to be! even better than 2019 for that matter too. 3rd time lucky right? any new years resolutions i ask myself? stop swearing and fuck em all. oh for bollocking cunting fuck!

2020 was a big meaty slab of 2nd degree rare roast foot for me, with a side of broken flamingo leg and a hint of a little something called coronavirrrrus. 2019 saw me get my heart broken twice in a single summer, i mean c’mon! it’s better to love and lose, than never love at all as they say. even if you lose it to your old, bald, bucktooth neighbour or an ex’s weird man child best mate. 2021 has to be better, it just has to be! 

i did try ketamine for the 1st time though (in hospital, but still) and i k-holed myself into thinking i was a literal human boomerang. don’t ask! i must say, it was the next best high after accidentally concocting sizzurp inside of me and smoking a 10 bag on a warm night in june. sorry grandad, please don’t google any of this me old son. i was just trying to live my best life! i spoke in an irish accent for a whole hour that night, ask lizzielizard102 on tiktok. unbelievable! how many of you read that last word in an irish accent? 

It’s been awhile since i last dropped a banger and no i’m not talking about the fact i haven’t shat a megalodon shit for 3 days, despite the copious amounts of cashew nuts ingested left over from christmas. i’m talking about a twodoughnuts classic bitch slap to bloggers everywhere and proving to all ya’ll that i never fucking left!

but in all seriousness 2021 will probably be just as shit as the rest of them, we’re all fucked and we’re all going to die! #makeherdimmunitygreatagain #notothevaccine #thearthisflat #epsteinisinnocent

imontv

hey guys, sorry it’s been awhile! i’ve been so busy with my little ones, looking after myself and work, not necessarily in that order either. aubrey turned 5 last week and is enjoying school and nursery is going well for ethan. i’ve just had a lush weekend with my babies, where we had brunch in an outdoor pod and had halloween fun making cakes, face painting and a mini disco. 

i’ve been working hard on the relaunch of the new pathfinders neuromuscular alliance the last month or so. it was the big day last week hosted by moi, and as usual we absolutely smashed it! we have some new peeps on board, we received lots of kind video messages and i got to cut the ribbon with some bananas on my head. for any pathfinders bizniz please email mitch@pathfindersalliance.org.uk! i’ll be hosting a wellbeing event at the end of the month too, check it out.

i just wanted to update you on where i’m at with my vent!t campaign from back in the summer. everything went a bit wrong when i broke my leg and things went a bit quiet after we opened up our facebook group. getting respiratory supplies has got slightly easier, though it’s still not where it should be and with another lockdown about to start, who knows? i’ve been in contact with my local MP and nhs trust, although surprise i’m still awaiting some responses.

i’ve been paired with a medical student for find a cure’s student voice. it’s an essay competition and the student I was paired with has chose to write her essay on the effects of lockdown on people like myself. let’s hope it wins. i’m also in the middle of writing an article for them.

and now the really exciting bit! next week i’m going to be on the telly box and on the radio all in the same day all being well. bbc breakfast and bbc radio 4 to be exact! they are compiling a report about the anniversary of the launch of the dda (equality act), they saw my campaign and are interested in sharing my story.

this is well exciting proper like!

goodlife

i’ve been quiet the last bunch of weeks rehabbing my leg fracture and it’s been one hell of a road to recovery. i’m happy to announce my leg is now officially brace free. i’ve got to say, this one got me good! from my ketamine trip where i thought i was a boomerang, to every tom, dick and sheila coming in to “help” and my 6 weeks “holiday”, it’s really been something and it’s felt more like 6 months. i’ve lost weight, sleep and even more of my sanity, but being well again makes me really appreciate being well. well for me anyway.

i’m particularly overjoyed this week as my little girl started school yesterday. 5 years have flashed by and i will never grasp where that time has disappeared to. i know exactly what i’m here for though and i’ve known it for awhile – my children. nothing makes a parent more proud than to see their child in school uniform for the first time, because you did everything you could to get them there. all of a sudden they seem instantly older and a slight panic sets in, but it’s an extremely proud moment and a reflective one as well. she’s no longer just a mini human that you do everything for, she’s becoming her own person and boy will she make you know about it. my 5 year old daughter is now “too busy” to facetime daddy! 

my boy started nursery for the first time as well and before i know it, i’ll be seeing it happen all over again. i’m hoping if nothing else at all, nursery makes him slow down a bit. he’s always running around with his intoxicating smile, bumping into everything. compared to his sister who’s as loud as the day is long, he’s much quieter and says a lot less, but he’s surprisingly clever. it feels like the perfect time for him to go to the next stage and when i asked him if he enjoyed nursery, i got a big fat yes!

and last, but not least… at long last, i get to have my little beauty’s all weekend every other weekend. everything is finally looking up!

breakaleg

*don’t read if you don’t like gross stuff!*

last friday i went out for the first time in ages, for some me time to get my hair cut. i left early and ended up going for a walk around the downs. i never made it to the barbers. we got back in the van, drove about a quarter of a mile and had a bit of an incident. another car was indicating in as we were pulling out, though he didn’t turn in and carried on. we hit the breaks hard! so hard that i fell forward, putting all my weight on my left leg. somehow we didn’t hit. i heard and felt a snap and instantly had excruciating pain in my leg and hips. my carer reacted quickly, sat me back, put my ventilator on as i was hyperventilating and i calmly said “don’t panic, but i think my leg’s broken”. put it this way, i was doing my best flamingo impression. i do have a chest strap, but “i was only popping to the barbers”.

we weren’t far away from the hospital so i tried to direct, until i passed out from the pain. so we got an ambulance roadside and got to the hospital pretty quick. literally walking through the hospital doors i said i was doomed, with that my vent fell off the back of my chair and the tube broke. come on now! i had very little pain relief for a few hours until one of the doctors finally managed to get a line in. this is when i had my first experience with ketamine, yes that ketamine. apparently that’s a thing. i k holed for a bit, spinning like a boomerang, jumping out of my skin every 2 minutes and i couldn’t feel a thing. it was fantastic. don’t do it kids.

i had my first ct scan which was exciting, until the pillow my leg was resting on got caught and bent my leg. oh i shouted! it confirmed a fractured tibia just below the knee, luckily my hips were fine. 22 years later i broke my leg again. amazing. i got a cast, then a brace the next day and all of this was agonising, thank f for drugs. oh and some lovely hca thought it would be a great idea to pull me by my broken leg to change the sheets. cheers love. i’m negative for covid though so that’s something.

i came home sunday and couldn’t wait to get out, i’ve been in bed since and it’s been difficult. i’ve seen district nurses, physios, got an air mattress, pain relief patches and new slings. all things i’ve been asking for, for the best part of 6 months. i should’ve broken my leg months ago. this is england folks. they wonder why i’m a bit grouchy at the moment. i’m still in pain, but it’s getting better slowly. all this just as lockdown and shielding ends, unreal.

so currently i’m accepting sympathy, give it to me!

vent!t

i first started writing about this coronavirus business in a post called onyourown. this was about the government’s lack of preparation and ongoing failures regarding things like ppe and vague conferences. this post highlighted the fact that us “vulnerables” were well and truly on our own. then i wrote about some not nice stuff in my deathrow post. i heard stuff was happening and had feared it. this included disabled people being forced to sign dnr forms and getting overlooked due to our vulnerability. 

and then it all became very real in chooselife. i had a phone call from my respiratory physio at the bri. they asked me about filling in a respect form! i refused to talk about it. it wasn’t legally binding anyway, so it was pointless. this was followed up by asking me if i wanted to sign a dnr.

next up was nofilter. i was told that once i had ran out of bacterial filters for both my cough assist and ventilator, i’d need to use both machines from then on without a filter. i went on a rant and it caused a bit of a storm. it got picked up by the disability news service here and here, as well as bristol post and my mate sanj got venting too. i’ve since had a response and made an official complaint. i even contacted my local mp jack lopresti, who has sent me a letter and i’m awaiting a further response.

after coming across a bunch of similar stories of others not being able to access equipment with theexpendables, i decided to set up a group called vent!t with fi anderson, where we can share our stories and also share supplies if need be, to make sure we’ve all got what we need. because sharing is caring. we are in talks with a company who is looking into 3d printing supplies too.

now inclusion london are exploring legal action against the nhs over this. this all really shows that if you’ve got something to vent, vent it!

thewakeup

can you believe that it’s actually been a whole year since i had my heart ripped out, stamped on, spat on and shat in!? oh how time flies when you’re having fun!

a wise man once told me “life is a cake” or something and at that time my cake was mushed and mouldy, i called bullshit at the time. turns out that wise man was right. my kids, my family (there’s even a strange zen in that at the moment too) and simply me. that’s my cake. i’d like a sexy chica on my arm too, but that’s the cherry on an already delicious cake. i get down days and i probably always will, but i’m at one with myself. i thought i would never bounce back and here we are. 

in some ways i’m nicer than i was, i’d become selfish. you know what matters? family matters, friends matter and the little things matter. you get out of the world what you put into it. the people in my life are very special to me, they make me feel special to them as well. some people will never know what that feels like, because they want that next thing all the time! i don’t want the next thing, i’ve got it. i put all my eggs in one basket before and it turns out the basket had a hole in it. 

as rough as it’s all been, the tears, the sleepless nights, the contemplating god knows what, the scratching and clawing. i had to go through it. like deadpool said “we can’t really live until we die a little”, so i should really be saying thanks for waking me up. i’m no longer lost in somebody else’s orbit. i’m free.

and for some reason i got the neighbours theme song in my head…

theexpendables

now, muscular dystrophy patients who attended the ventilator clinic at wythenshawe hospital up in manchester, can’t. a patient found out by chance whilst cancelling an appointment, that they’d turned the clinic into a covid-19 intensive care unit. no letters were sent out and no phone calls were made to explain what to do during the pandemic. the clinic just doesn’t exist anymore. “we’ve just been ditched.” said another patient fi anderson. one patient’s ventilator has been playing up and she can’t even get hold of anybody to repair it, never mind get supplies. they are holding on for now.

fi got me in touch with john pring of the disability news service (dns). he covered the story of us “expendables”, here and here. my own nhs trust have now backtracked and said they will provide filters for both the cough assist and vent, but to change them every 10-14 days instead of 7. i feel this is only because of the backlash of their initial advice. i’ve been sent 5 filters! sophie grubb of the bristol post ran a story on this too. it looks like my nofilter post ruffled a few feathers and i do appreciate this story being picked up. my mate sanjeev mann up in scotland also wrote an article for bbc’s the social regarding critical care. it’s priority that disabled people are treated fairly and not discriminated against due to the government’s lack of preparation. we are not second best. stop the roulette wheel!

i will be setting up a facebook group called resp repairs & supplies. if you have any similar stories please let us know. most importantly if you need supplies or you have a problem with your equipment please get in touch and we’ll see what we can do and at the very least keep others informed about what’s really going on across the uk.

28

as much as i tried, my body somehow managed to survive the old 27 club. through the heartbreak, head fucks, alcohol and most recently lockdown, i lived. i think i might of even concocted some purple drank in my body at some point too. it might sound depressing, but i’m a bit disappointed. going down like kurt cobain and jimi hendrix was kind of exciting. i’m guessing it wasn’t meant to be and i’m sticking around instead.

last year my bday was bittersweet, but ultimately one i’ll always keep in a special place. here we are again and the landscape of everything has changed. this marks my first and hopefully last birthday in lockdown and although it won’t be filled with all of my usual out out stupidity, i will get to spend it with the 2 little humans i love most. the kids are coming to stay, we’re having a bbq, lighting a fire in the evening and eating marshmallows. happy birthday to me! we will hopefully be joined by the rest of the fam via zoom link and i will be making some juicy cocktails. which is really just an excuse to sing tequila-la-la-la with my tongue like the absolute pervert that i am. 

the dance floor will be my patio, the dj will be myself and the disco lights will be my disco light bulb, but it will be a party nonetheless. shania twain on the ready, let’s go! 

theresponse

last week i sent a pretty hefty email to the respiratory team from the nhs university hospitals bristol. then it got picked up by john pring at the disability news service. here was the response i received. 

“dear mitchel, *i’m so expendable, she couldn’t even be bothered to spell my name right.*

i apologise that you have been unhappy with our service during the covid pandemic. *sorry no. 1.*  these have been unprecedented times and as a result our service has had to respond quickly to the pressures and demands that we have been faced with.

with regards to the respect form, i apologise if this has offended you. *sorry no. 2.* many of our patients have wanted to discuss this, especially due to the uncertainty about coronavirus. the trust initially had the policy that all patients admitted to hospital were required to have a respect form completed- therefore we were attempting to be prepared for this. now that the peak with coronavirus appears to have plateaued, we are able to start returning back to our usual way or working again. *that was quick.* however, i do apologise if this has caused you any distress. *sorry no. 3.*

with regards to filters; there was a national shortage that we needed to respond to quickly due to the coronavirus pandemic. as many other home niv centres have not previously used filters for their ventilators in the community, and these centres have not shown evidence of increased infection rates, as a service we decided to respond to the crisis by also stopping filtering in the community. 

filters were essential for acutely unwell inpatients with coronavirus with the aim of reducing the spread of coronavirus between patients and healthcare workers during the peak of the pandemic. now that the peak appears to have plateaued, we are again reviewing our service and our policies in response to this.

we do not yet have a supplies available to routinely start sending out filters for ventilators again, however i have taken your request forwards for discussion and i will get back to you once it has been decided if we have the resources available to start to at least look this on a case by case basis. i will be in touch shortly with a further response regarding this. 

in the meantime we have been able to provide filters for your cough assist and these will be sent out to you. *ah ok, that’s a change of tune.* we would ask that if you feel you can reduce the frequency of changing these filters, perhaps changing them every 10-14 days rather than 7 days, this will help to preserve your stock. this is also the approach that other home niv services have taken nationally in order to respond to shortages of consumables. *just imagine if our government had enough of anything in the first place.*

*follow up response.* i have discussed the issue regarding filtering in our team meeting this afternoon and as a service we are not in the position where we can send filters out for ventilators. therefore please continue to use your ventilator without a filter in situ as per previous advice. *and once again, on your own disabled peasant*

kind regards

dominica horton

niv lead physiotherapist

nofilter

this is the next instalment of my “onyourown” series. i had a telephone “appointment” with one of the physio’s from the bri a couple of weeks ago. i was told that once i had ran out of bacterial filters for both my cough assist and ventilator, that’s it. i’ll need to use both machines from then on without a filter. i also didn’t appreciate being asked about “respect” forms and dnr’s, it came across as pushy, insensitive and actually discriminative.

the ventilator is one thing, but using the cough assist without a filter is disgusting. day to day with no filter is bad enough, but when i’m unwell with a chest infection and i’m regularly coughing up thick mucus, then what? this can’t be good for the machine itself, is unhygienic and could affect my health. it even says in the user manual to use a filter “bacteria filter: the filter, which protects the device from entraining foreign material from the patient, can be left in place as long as it is not blocked by sputum or trapped moisture.”

i was told there was “no evidence” that filters need to be used in a home environment. what’s the difference between a hospital and a home environment in terms of filter use? if they aren’t necessary, i want to see evidence that says so. if they aren’t needed, then what are they made for and why have i been using them for my machines for the past 5-10 years and been told to regularly change the filters, especially when i’m unwell?

i also find the timing very interesting with coronavirus. i looked at buying the filters myself, but everywhere i looked is out of stock. this is totally unacceptable, i’m not happy with using my machines without filters. i should be provided with them.