Well. And there was me thinking the most annoying part of finding out I was Allergic To Silicone was having my [First] Suprapubic Catheter implode, after giving me one almighty skin rash that looked more like I was being burned…
Huh. Apparently Not…
That Realisation comes when you also realise that the red, blotchy, marked skin with raising welts under your Smart Watch are from An Allergy To Silicone… As are the nasty red marks and peeling skin under your “Please Be Patient I have Autism” wristbands. So… Not Heat Rash After All Then…
Off came the wrist bands and the Smart Watch. The Very Helpful Smart Watch, which made it Very Clear when I wasn’t feeling too happy (Heart Rate in Triple Figures, Check…), or proof that I really had slept badly (I basically need a mallet to the face to take notice of such things, and this works)… ANDThe Most Important One Of All… The Breathing Regulator. This has probably been The Most Helpful thing I’ve had in a Long TimeANDit’s always with me, on my wrist. Well. Until now…
That Breathing Regulator was the Tool that myself and my friend S always use to help me calm down Extreme Anxiety and even Impending Meltdowns. Most important of all — I Could Use It By Myself, especially if I was alone and no one was around to help me [yet], it was something I could turn to for support and comfort, to help me try and control my breathing… To Remain In Control. It’s helped me keep hold of frantically-building Meltdowns coming from Extreme Anxiety or Panic Attacks… Long enough for someone to come and help me (I’m never completely alone right now; it’s too… Dangerous, really [sad face]…)
And now I realise I am almost burning my skin with this Silicone Allergy… I Am Without The Breathing Regulator… As well as being without a Smart Watch, and everything else that one does…
Is There A Needle Even In This Haystack…??
For now, I’m borrowing an older Smart Watch that S still had, after upgrading — and amazingly, said watch’s band is actually made from PU Leather. But there’s a Problem… Or Two. One, it doesn’t have the Breathing Regulator. And Two…? It’s Baby bloody Pink… (!!!)So. No. I need to get another one.
I have considered re-strapping my Silicone one… But it’s already over a year old and it’s got a big crack through the middle. It’s better to look for a new one, really… And anyway, the newer ones would be better, right…?
Hah! Yes, that might be true if you want a nice shiny one with a Big Fat (or thin and flimsy) Silicone Strap! There’s Mountains Of Those, nowadays!
Stuck looking for a [PU / Real] Leather or Stainless Steel wrist-banded Smart Watch, the pool of choice is Significantly Low… Especially since what I want is Very Specific. And so far… Only ONE has ALL of what I wanted. Except it’s not nice. And designed for men – as in, the style of wristband inevitably means that it’s going to be too big, even at it’s “tightest”. And it did not have good reviews. But it’s the Only non-Silicone one to have a Breathing Regulator option on it.
There are barely a few others that have what I need as well… The headcount is not even in double figures.
And any other option means getting one that also has compatible stainless steel wristbands to purchase separately. And they cost enough on their own, without adding more expense to them. And I’m not even talking about the High End ones.
It does make it a lot more difficult to try and find something that might work when the sellers who put these items on Amazon insist on focusing more on the fact it has Social Media messages and ovulation trackers, than it does on whether it does anything else at all…
The best ones I’ve seen is by mid-range companies Garmin & Honor, where some watches activate “short breathing activity” option, if your Obs come back high enough to be classed as “Stressed”. To actually have it offered up-front in a stress-out state would be immensely helpful… It’s just a shame that it’s way more than double the price of anything I could ever afford… But I am gratified to know that there are watches out there that can do that. still…
To actually find something that will manage to cover even some of what I want…. Well. It honestly simply feels like a lost cause, I admit…
It’s not even that it’s unavailable — it’s that they all have the Silcone bands. To make them usable, I then have to shell out for a non-Silicone wristband as well. Seems rather unfair, really…
You know, it’s bad enough being a Wheelchair User when it comes to Public Transport. Adding my Fretful, Vexing, Social-Phobic Aspie Brain to that, means that it never goes well when it comes to using them.
Now, I am glad to say, in hindsight, that this was the only thing that went wrong with this journey, but it’s still an important thing. To me, anyway.
In fairness, Merseyrail have been the best when it comes to going on Public Transport, especially when it comes to trains (don’t even think about getting me started on Virgin Trains!).
However. There clearly needs some call for better training, when it comes to “Automatic Entitlement” to discounted tickets for certain Disabilities when going on their trains.
I am a Full Time Wheelchair User, so I get to use those special “cut out” sections by the doors, the one that has the flip-up seat. I don’t use up a chair.
Therefore (as I should be!), I was under the impression – and so it says on their own pamphlet “Helping Older and Disabled Passengers” – that I was entitled to:
“34% off Anytime Single / Day” Tickets “50% OffReturn” Tickets on Merseyrail.
The policy on the Pamphlet actually states:
“You are entitled to these discounts if you are: a wheelchair user staying in your wheelchair during the journey (the discount also applies to one person travelling with you)”.
And Yet, when I presented myself at the Ticket Office (located within a Convenience Store) of Liverpool Central Station, a few weeks ago, the person at the counter gave both myself and my companion (who was herself having to use a Rollator for mobility) Full-Priced Adult Tickets.
Fortunately, I was only getting the Anytime Return: Central to Fazakerley. I’m glad it was nothing over-expensive, otherwise I would have really been struggling.
I was charged £4.15 for “Adult Standard Class” Ticket. My Companion got the same one. I was charged £8.30 in total. Therefore I can be well aware I did not get the Correct Fare given to me.
And, yes: My Companion was also due the same Discounted Fare, as well: This did not happen either.
As an Autistic person, I have difficulty speaking to people at all – and I would always prefer the ticket machine to a cashier any day… But this is how you get your Automated Discount, so I swallowed my (chilling, nauseating, intimidating) Fear and Big Fat Did It Anyway.
Unfortunately, this time, my courage was for naught when we came away with our Full Price Tickets anyway.
I may as well have spared myself that anxiety attack and gone to the machine after all!
<p class="has-text-align-justify" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong>Because of my extreme social anxiety, and the fact we were running late to meet our designated train</strong> (<em>I had already booked Assistance and I had a hospital appointment to keep</em>), along with our aforementioned combined mobility issues, it meant we had no time to stop and argue the point. So I didn’t. <strong>I <em>couldn’t</em></strong>.Because of my extreme social anxiety, and the fact we were running late to meet our designated train (I had already booked Assistance and I had a hospital appointment to keep), along with our aforementioned combined mobility issues, it meant we had no time to stop and argue the point. So I didn’t. I couldn’t.
So, I picked up the aforementioned Pamphlet, just to check, because this what I always do; go to the ticket office and I get the discounted price. This may the first time I think it hasn’t happened. I wanted to check if it was an oversight or changed policy.
<p class="has-text-align-justify" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">Since it was <em>not </em>due to changed Policy, it would <strong><em><span style="text-decoration: underline;">HOPE</span> </em></strong>that this incident was due to <em>oversight or lack of training</em>; although it <em><strong>would </strong></em>seem that it is rather <strong><em>difficult</em> </strong>to have <span style="text-decoration: underline;">any </span><strong>oversight over someone in a wheelchair</strong> coming up to your till and <strong><em>not</em></strong> thinking they required one of the abovementioned <strong>Automated Discounts</strong>.Since it was not due to changed Policy, it would HOPEthat this incident was due to oversight or lack of training; although it would seem that it is rather difficultto have any oversight over someone in a wheelchair coming up to your till and not thinking they required one of the abovementioned Automated Discounts.
<p class="has-text-align-center has-background" style="background-color:#ead8a8" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong>Clearly – <em>this is an oversight of Discrimination and unfair charging against its own Policies</em></strong>. I feel I deserve more respect and understanding than to be charged the Full Price when your policies dictate otherwise.Clearly – this is an oversight of Discrimination and unfair charging against its own Policies. I feel I deserve more respect and understanding than to be charged the Full Price when your policies dictate otherwise.
I do not take up a “normal” space, or sit in a chair. I cannot just waltz up to a station and get on any train I wish like everyone else.
I must pre-plan, call ahead within at least one hour, arrange myself to ensure I get the right train so I can be helped on and off the train at either end. Having to go through all of this also scares me to death.
The discount is justified and earned. To be looked at right in the eye, seen, then denied the rightful Fare seems preposterous; and not one member of staff can claim they “didn’t know”.
To be honest, I sincerely doubt I would ever have the courage to bring this oversight up, even if I wasn’t late for the train – I am generally far too frightened to speak to people, and especially to question or query something that doesn’t seem right. I am also very scared of going on the train, so I have enough to deal with there, without having to add anything else, as well.
And, to be fair, I shouldn’t really have to point it out or argue it, should I?
I am sitting in a wheelchair, shoving it along, wheeling it up to a counter far too high for me to feel empowered, or see the person or till properly, let alone comfortably reach the chip and pin machine to pay. I’m definitely not going to be getting out to use a seat.
There’s not really any question about my situation; therefore there should benomistake in giving me the correct Fare up-front. I also even have my “Autism” lanyard on, so that’s obvious, too – meaning I probably won’t be engaging with people to tell them if they made a mistake.
<p class="has-text-align-center has-vivid-purple-color has-text-color has-background" style="background-color:#bbf7e6" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong><em><span style="text-decoration: underline;">That Staff Member/ Representative looked me right in the eye and stated the Full Fare</span></em></strong>, therefore my cynicism is piqued.That Staff Member/ Representative looked me right in the eye and stated the Full Fare, therefore my cynicism is piqued.
<p class="has-text-align-center" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80"><strong><em>I have seen that, in how much of a “mistake” it could have been; some people can be unkind. I was too afraid to say anything – for both speaking up, and missing my train, and being late to the hospital.</em></strong>I have seen that, in how much of a “mistake” it could have been; some people can be unkind. I was too afraid to say anything – for both speaking up, and missing my train, and being late to the hospital.
On the other hand, it’s not just me who wouldn’t say anything; plenty of “Neurotypical” people also wouldn’t like to “cause a fuss” or “be embarrassed” by challenging the person handing you your ticket.
Believe me, it can feel Humiliating enough to be in a Wheelchair, asking for help, always at the mercy of other “Better-Abled” people, having to “be different” or treated “special”. You don’t want to be up there arguing your Rights as well, causing more of a fanfare about your Disability/ies than you already have. Even if it’s for just £2.07 discount per ticket on an Anytime Return to Fazakerley.
It’s the Principleof the Matter that is important. Not the money, though it helps: It can be a financial relief, too, obviously, but what it also does is show respect for your position. It shows understanding. It is significant for more than the financial side of things.
However: To have someone look right at you sitting in your wheelchair, then make you pay full price for your Ticket, is immensely insulting… I’m not sure if anyone not in that situation understands quite how much it really is jaw-droppingly insulting it actually feels.
It’s not even just about Proper Training. It’s just about BeingRespectful. Plain and Simple!
But there IS Following Company Policies. Giving the Correct Fare:
It is surely unthinkable that a walking person would be automatically given the Wheelchair Discount, Right? There would be all kinds of repercussions – as well as it being so Very Obviously Barmy!
Right… So my face exploded – for the second time – with an abscess on a broken tooth. It’s in the middle-ish of my lower left jaw bone. Literally overnight (it wasn’t like this yesterday!), this time, it sprang up and doubled in size; this thing is a Monster that’s already made me look somewhat like the Elephant Man already – and I am not particularly interested in a Second Go.
I already had this issue back in February, and it took over almost my entire face and neck by the time I actually got “Treatment” – and that was via A&E and two different hospitals, AND and overnight stay for emergency IV antibiotics, before it burst. Yes, that’s how long it took. I couldn’t really swallow (barely able to take basic medication), and it was affecting my breathing. It was hell… And then finally, they did something about it.
In the end that one was drained by the second A&E department, after they made me switch hospitals (that time it was also a weekend, and the hospital I went to didn’t have a maxillofacial department out of hours. Naturally…). So, after overnight IV antibiotics, I was transferred the next afternoon over to the other hospital. Where they stuck me with an enormous needle, and drained the stupid thing out. Seconds later, my face felt and looked pretty normal…
And funnily enough, I really didn’t want to go through that again.
CALLING FOR HELP…
So… Like a sensible person, the first call was to Out of Hours. I’m in pain, and my poor Autie (aka Autistic) Brain is all over the place, so my Mam (bless her), is doing the phoning (she’s a nurse, so that’s useful at times like these)…
They said, because it’s Dentristy, it’s “Call NHS Direct for them to tell you where you can go” (thanks COVID-19 for messing something else to do with my health up). Fine. Fair Enough. Just call 111, Right…? …. RIGHT..??
Ohhhhh No… Nope. Nope. Nope!
Not in North Wales…!
Possibly the ONLY place in the UK where CANNOT USE 111 phone number – their FREEPHONE phone number…
WE HAVE TO PAY!!
In North Wales, under Betsi Cadwaledr Health Board, the people of poverty-ridden North Wales (and that’s before COVID-19) MUST CALL AN 0845 number to reach NHS DIRECT!
Nooo, I’m NOT Mad, or Angry… No. I amStunned. Horrified. Fuming. Furious. Disgusted! And My Mother has to put £10 Credit (as opposed to using her normal GiffGaff “Goodybag”) onto her phone to try and call them. Unbelievable!
It takes about 20 Minutes to get hold of them… And then… then they wanted to talk to me… Oh Dear. That is not very Auti-Friendly, but they wanted to talk to me about my symptomology.
I managed it… Just. They told me I needed to phone a specific number, and they would be open between 1pm and 4:30pm today. A free one at least, starting with 0300, and a Code to go with it, as a Reference.
0300 0856 230
She proceeded to give me other gems, like using ice packs or not having things too cold or too hot. Nothing sweet (if that’s the case they really need to re-think how they make Oramorph…!). Just in case I was a complete moron. And That Was That.
And You Know What? That phone call cost £7.76... Nearly £8 for that! It makes me want to throw up and cry all at the same time…
Am I actually being Victimised because I am… Welsh, and in the Northern End?!
The Upshot of this Phone Number thing is that they have amalgamated all kinds of things into that one number. Including Dentistry. And apparently they do not answer their phones, because all it did was ring and ring, then ring off… Over and over and over again.
Just over £2 was all that was left of my Mother’s phone Credit, from that initial £10. She put another £15 on to call NHS Directback about this, to see if there was something we were missing, and obviously didn’t know how long she was going to end up having to wait.
It was indeed another long wait. Only then to be told, by the person who finally answered, that, actually and in fact, that Dentistry Amalgamation phone number wasn’t actually open in the afternoons on weekends, at all, after all… It’s only open on weekends from 9-12pm. And you have to just keep on ringing until some douchbag answers the phone. Maybe. And it’s not like this is even Common Knowledge – or on the Internet. I looked. A lot…
Now, the Second Time We Called — NHS Direct cost £8.66...
A Grand Total of £16.42 basically WASTED… and£25 of Credit Purchased…
It’s not like we have any money to spare or waste, let alone THAT much…
But worse — could you imagine someone with even less means needing to contact them? I mean… They just wouldn’t…(!)
SORRY, NO WE CAN’T HELP…
A little while after all that, NHS Direct Triage calls back. She insists on talking to me… and I don’t like her voice; it’s difficult to concentrate on and I have to listen for intonations, enunciation, tone, etc – or “Vocal Language” (like Body Language), as I call it in my own head…
It didn’t take long for the Sheen (that’s the veil of “Normal, NT” communication that I force on) to fall down, so I handed her back to my Mother when it was clear she didn’t like the way I was talking now. I was scared, overwhelmed, and utterly drained and exhausted – and I did not have enough Spoons to play along with NT voice tone games right then, whatsoever…
The final answer at the end of all this ludicrously ridiculous – and ridiculously expensive(!) – debacle, was — dear Gods help me — to do what we could have figured out for ourselves, if we’d only just realised there was No Other Help out there. To an NHS community hospital (sort of), right next to where my mam works along the prom, where they hold a dental clinic in the very early mornings, with a walk-in centre…
As In — The very place we spent all that time, effort and money, trying to Avoid…(!!)
Now, I have been left with No Choice… And I am forced to do something that is just going to make me all the more ill. Especially with my Fibro, and my Autism.
Tomorrow, I have to be at this community hospital by or before 8:00am, so I can join what will be an ever-expanding queue (Auti part very upset about this bit), for a clinic that doesn’t even start until 9am.
To manage this, I have to be awake All Night — This is because that between my pain, my meds, and the utter exhaustion, I cannot get up until at least 11am, and not entirely lucid until 12 or 1 pm and counting. If I do not sleep, I don’t have that problem, so… No Choice.
I’m Scared. I’m Overwhelmed. I’m Exhausted Beyond Anything and Everything.
And somehow, I now also need to do this. After wasting all that time and money, and effort.
For more than Two Years I have endured my Catheter’s Torment… And I came So Damned Close to escaping it this week… Instead, I get to endure its strange ways for even longer now.
There has been nothing but Blinding, Brain-Exploding, White-Hot, Agonising Pain for Days…
I have had no sleep for three nights straight — awake all night through solely from blinding agony and extraordinarily constant, non-stop, Bladder Spasms.
The pain wouldn’t even allow me the vague comfort lying in bed. It forces me to sit on the floor, shaking and yelling in agony… For hours and hours on end. If there is any reprieve, it means the pain is less (and in no way gone)… But I still cannot move.
I am constantly Blacking Out — completely losing consciousness, from a few moments to several minutes. This is what the agony & the exhaustion of this situation has done to me. I have even suffered with these episodes for several hours before. They’re frightening. These come from the immense and combined effects of having to endure constant blinding pain and the sheer physical exhaustion of dealing with sleep deprivation and enduring insane levels of Agony that hits nowherenear the 10-Score Pain Scale.
These Black Outs are not just “dropping off”, like you might do if you’re a “bit tired”... It’s not like sleeping, not at all… You don’t even know you’re going off; certainly have no clue if you’ve gone. Coming round, though, is an absolutely Horrible experience…
Upon being roused — which usually can also take a while — I always end up struggling greatly with temporary full amnesia anywhere from a moment or two, up to a lot more than several seconds… And when (not ”if”) it takes a really long time for my existence to come back to me, it’s Freaking Terrifying…
Arguably, the really worst part of this problem, is all the Hallucinating. More Vivid… More Real… Than Any Dreams I’ve had… Enough for me to believe they really are real, whilst both experiencing them and even for some time after being roused. It’s one of the biggest reasons I have no idea about any conscious reality when I open my eyes…
I cannot argue any of this is new… In fact, that it isn’t, is the entire point… And that it should no longer be occurring — because I should already have a Suprapubic Catheter by now, meaning…
NONE OF THIS SHOULD BE HAPPENING…
Five Days Ago…I was supposed to FINALLY — Goddamned FINALLY!! — Get my Suprapubic Catheter Installed…
I was SUPPOSED TO Get. My. Goddamned Life. Back.At least a little bit…
However, instead of managing to figure out the First Steps of living with a Suprapubic… I end up in even more Dire Straights than I have been for a while…
Quite Frankly, it is unconscionable… And Being So Goddamned Freaking Close to that Finishing Line… Neither my head nor my heart can truly bear it or Process It… And What makes it worse is that since then, there has been blisteringly blinding white-hot agony from the Bladder Spasms like nobody’s business…
This should have been concluded by last August (2019)..
But!Not because of the Disppointment — Iwish it was, quite frankly!… It’s because that just at that specific time (ha! The time I truly needed that goddamned Suprapubic to be in…!!!😳🤬😤), two things turned up that really really would have gone SoMuch Better if I’d had the surgery before having to deal with those two things…
I’m SO exhausted and in So Much Fucking Pain, that I am Severely Blacking Out again — as I have been all day…
I am looking at having to suffer through a Third Sleepless Night In A Row… And I just can’t get my head around it. This obviously shouldn’t be happening — this should have already been All Over With By Now…
The Utterly, Utterly brain-exploding Blinding White Agony has been tormenting me all day… Like last night. And yesterday. And the night before that. And the day before that…
Immensely Agonising, Unrelenting, Cruel, Exhsusting… These Spasms have kept me awake for two entire nights, consecutively… Never ending. Needing to sit through immensely intense, unbearable, bladder spasms.
Screaming and writhing for even more days after that stupid thing should have been removed and Replaced…
My head is Spinning… I literally cannot see straight — my eyesight wavers and twitches rapidly, blanks out, cannot focus… And all I want to do is to go to Sleep…
I have been Blacking Out All Goddamned Day… It’s been horrible. So stressful. So Anxiety-Inducing… I am Vibrating from the Physical & Emotional Stress — and unable do to much of anything except have to endure the Agony Ripping through my body, every time a Spasm explodes inside…
My lower back is in Horrendous Pain; most of this is stemming from the fact I need to go Make… And. I. Just. Cannot. Go…!!!! Even trying, it could only just come right out wo…
I can’t lie down — or even sit up — in bed, because of the Spasms… One wrong breath and the damned Catheter will Shove itself the fuck out.
Getting annihilated by wanting to do something good for myself…. How utterly cruel can you get…?
As long as I am doing something, something that involves some physical challenges involving some effort — like building a squares cupboard, and having to rearrange your bedroom to re-rig your computer — then I am playing with Fire. Brilliant-White Mind-Exploding Agonising was Fire.
So… The Rest Of The World Finally Has To Find Out How It Feels To Be Unemployed, Housebound & Helpless…
In the blink of an eye, overnight, without warning… Your. Entire. Life. As. You. Know. It. Has.
Completely. Vanished. Without Warning.
Covid-19 — CoronaVirus — is forcing people to face what it feels like to have your life dissolved, taken away from you, without you getting a single goddamned say in it…
One moment everything was perfectly normal, and you had nothing to worry about but normal life stuff… Then — Snap! It’s all so very suddenly just Gone…
Perhaps, now, at least, we might get a little more Empathy & Understanding when it comes with our own circumstances, given those of us who have no choice, will not be walking away when their Three Months‘ Quarantine is done.
For the last Six and a Half Years — and especially for the last three years I’ve not been able to walk at all — I’ve believed that Life has become way too surreal…
Somehow…Now… That experience and sensation has actually been surpassed even more, by the latest turn of events with the CoronaVirus Lockdown.
I think I suspect that I’m shutting down on talking, discussing, messaging, writing, blogging, right now, because I simply do not wish to acknowledge or remember what it’s like to… Exist… right now..
And I wish that was because of a stupid CoronaVirus… That’s the least interesting thing at the moment to me… If anything, the rules are everything I’ve ever wanted or dreamed of, especially as a confused child and teenager… I mean, seriously… Where the hell was this thing when I was younger?!! NO going outside! NO being around people! NO going to the shops! NO Visitors! NO Gatherings! NO Travelling! NO CROWDS! NO TOUCHING!! NO SCHOOL!!! SOCIAL DISTANCING!!
Crikey…I’d have been freaking Bouncing…!
Guess I might be one of the few Auties who’s actually Not having their lives disrupted and destroyed at the moment…? Am I one of the few people in general where life pretty much just goes on as normal…?
If I was living my life as I had been, I’d have been utterly, utterly distraught and destroyed… And I know that, because I already went through it Six and a Half Years Ago, when all this and more was taken from me, forcedupon me, and annihilated life as I knew it…
It’s taken me this long to even start thinking about the possibility of Acceptance for it… And the Frustration, Resentment, Anger, Fear; they’re all still raw, alive and well…
Clearly, I’m going to get a PhD in this Isolation and Social Distancing after all the years of practice I’ve had here…! I’ve been trapped in my room, in this house, for over Five Years…
Seriously, parts of me thinks it is darkly, ironically Hilarious how people are panicking and Stockpiling (toilet roll…??! Really, crazy people?!!) at the thought of having to be isolated at home for a period of time, as of its the Apocalypse or 28 Days Later… I mean, come on, it really isn’t worth so much Drama!
It’s just 12 WEEKS people! Three MONTHS! … I’ve been doing this for 6 YEARS… And I’ve survived. Ish… And, suddenly, I’m the one looking at others with pity and distain for freaking out about doing something I just do every day…
Come and live in Our World, People…! Here, this is All. Normal…! (So just get on with it, like we do..? Like you all Expect, us to...?)
Seeing people bemoaning the fact they’re in self-isolation online, that they’re forced to not see people, forced to not work, forced to only see family over Video Call, even forced out of work because you cannot leave the house… Well… This is how I live… and I never have received any sympathies, extended support, or outreach because of it, and have clearly been expected just to… suck it up…
So… Shouldn’t. Everybody. Else. Now…?
Well, of course the answer to that is No… It wasn’t right to expect me to, and not right to expect everyone else to… But, my point is the hypocritical attitudes of people… When it was “just me”, I was ignored or pitied… Left to my own devices to just do it. It was a “Sad and Unfortunate” situation. — “Oh, dear, you poor thing… Now let me just get on with my life…”
But now it is they who are also so suddenly forced into the same situation…?
Well, now it’s suddenly up unimaginable to people that they have to so suddenly live this way… So… WHY is it only NOW all this is so TERRIBLE? It wasn’t so terrible to them when it was all forced onto me… and plenty of others who are also in the same situation.
Oh, and you know what else all us housebound and ill people didn’t do….?
“Normal” people, “Able” people, “Healthy” people… They Are All Hating This. Others are pouring and heaping their sympathies on them, wishing them well, offering support, being kind…Where they hell was all that when I was suddenly permanentlyhousebound? Where the hell was the sympathies and kindness and understanding from people when there was no more going out or being normal ever again when I could no longer leave?
It wasn’t there, because people didn’t want to think about it, or be associated with it, or acknowledged.
Where was the extra support when my already fragile mental health was Destroyed by being room-bound, helpless, imprisoned, isolated, and really ill…? Over the YEARS…?
It wasn’t there, because they didn’t want to know. Or didn’t understand. Or if frightened them too much to think about it, or to be faced with it. Now, of course, those very people will expect (or at least hope for) the very same sympathy and support they refused to give others, when devastating illness or conditions controlled, broke, and confined those people, when they became too ill or controlled to do anything anymore...
I’m not the only one by far with lifelong or long-term chronic illness or condition that’s had scowly-faces, derogatory remarks, heavy exasperation, being told to (effectively), “buck up, it’s not that bad having to be home all day”, or people dropping out of your life because you don’t do anything or go anywhere any more..?
Now… Everybody gets to understand just what this is like — Being imprisoned within a small building. With other people. Unable to leave, unless it’s exceptional circumstances. Forced into it, because if you don’t you’re going to pay, or you’ll affect others negatively, or you’ll have to suffer the consequences by being very, very poorly…
Literally nothing about my life has changed. This is my life. Now everyone else gets to see what it’s like.
When they’re forced to stay indoors and not leave their home.
Imprisoned because “they’re in a vulnerable condition” & Forced to rely on others who aren’t.
Forced into being separated from Family & Friends
Forcibly prevented from going out to places, meeting up with friends or family.
Forced into living on the Internet for all forms of actions, reaching out and even communicating with friends and family.
Forced into No Travelling.
Forced into knowing that if they left, they’re making themselves prone to being really ill or even dying.
Today, I got a call from Urology stating that the Suprapubic Surgery I have been waiting Two Years For has been Cancelled — Four Days Before it was due (20th March 2020). Due To The Coronavirus Pandemonium.
This was after waiting One Year to see the consultant — on 14th February 2019 — then having to be forced through THREE Pre-Operative Appointments (the first being in May 2019)and a further consultation with Haematology10 days before the surgery.
This procedure should have been completed by August 2019, when the first Pre-Op ran out. Instead, I had to wait an ENTRE YEAR just to get that Surgical Appointment. Which they have now just taken from me mere days before it was due to go ahead.
Now, I face untold amount of further waiting. And therefore, untold amount of further Catheter Expulsions, more agonising pain, more bladder spasms, more of my energy being drained and depleted even further than they already have been, further stresses and anxieties related to this, and no ability to basically go anywhere, lest it falls out whilst I am outside. If I had the actual energy to go. Or the lack of spasms and pain to go. Or, frankly, do much of anything, either.
First of all, the Catheter in and of itself is painful to have inside my bladder. Bladder spasms are Constant, extremely agonising, and are throughout the day, every day. During each spasm, the pain is so intense, I cannot breathe, and I cannot move. I have to try and calm my physical self down, otherwise any movement at all will result in immediateexpulsion of the Balloon. They can last from seconds, to a few minutes, to half an hour or more. It entirely depends on what it feels like. And with this, comes the obvious bypassing. And eventually, (or extremely rapidly!), the Balloon with inevitably get shoved out by all those spasms I am getting.
Whilst the Catheter is in, I have extreme difficulty moving my bowels. If I manage to go and move my bowels, and more often it’s when I do not, I also have to spend a long time in the bathroom – and almost always over an hour, each and every time – fighting with my body’s reaction to the Catheter, so as to ensure that it does not expel itself. Too often, I lose this battle, but every time I have to try.
More often than not, I cannot go and move my bowel for days on end — and it has nothing to do with the state of my bowel, and nor am I constipated. Instead, I cannot let myself pass stool on most days, because any stool that is extracted will take that Catheter right out with it. In fact, that happens so often now, it’s a 50-50 chance as to whether it’s a bowel movement or a bladder spasm that pushes them out. In So Many Cases… It’s the two of them Together, in Unison.
There’s also the problem that spasms meant for Peristalsis ends up being sent to my bladder and trigging spasms in there, causing the catheter to immediately be expelled if I don’t take immediate action. This has been going on since before I went to hospital for Sepsis – they were so bad then I literally would scream my lungs out. Now, it’s not quite that bad, but it’s still extremely painful now, regardless.
This issue with the strange interaction with my bowel creates its own [secondary] issues, obviously. Since the stool is technically capable of leaving, could be excreted, it seems ridiculous that I shouldn’t be able to manage it — but I am not willing to have my catheter expelled along with it. The upshot of that, of course, is a lot of bowel issues, because I cannot afford to secrete it if it’s going to also shove the Catheter out along with it.
The thing with that also is that I end up going 2 or maybe 3 times to the bathroom in a day, and often in the early hours of the morning – for instance, this morning I was back in from 3:30am until about 4:15am. I often pass out whilst I am there, usually from Exhaustion, and Pain. It’s a difficult, painful, draining trip for me to make, from my room to the bathroom, trying to crawl or drag myself there, then pull myself up onto the toilet using the bars set up for me, which takes a good lot of strength and effort to manage, because I have to hoist my entire body up there and place myself on the toilet, and come back off again, using just my arms.
The implications of the Catheter expelling is horrendous. It’s not straightforward. It’s not simple. It’s not easy. It comes out with the Balloon intact, each and every time. It triggers even more spasms, which are even more intense. Causes Retention. Becomes nothing less than Blinding Agony. It Requires Treatment in the shortest Possible Time, or it spasms shut.
And it’s (almost literally) happened too many timesto count over the past Two Years — in some cases I have had more Catheters within a single month than almost everybody else has In One Year.
The problem is that as soon as the Catheter comes out, everythinggoes into a locked-in spasm around my pelvis — my Gluteus, the top of my legs, and my bladder — and it is Agonising. The Bladder Spasms then almost do not stop at all. If there is any amount of what is basically leakage from the bladder, it feels like acid, then I cannot breathe or move, like with all the other bladder spasms I get..
I have found out (to my detriment, and over many instances) that If The Catheter Is Out For More than Three Hours, it is almost impossible to get another one in. It requires high doses of extra Oramorph. To say this is Highly Stressful and Distressing is a damned understatement and a half. I hate it. A lot.
This becomes a big problem if a certain someone answers the phone there (and by that, I mean I literally don’t know who they are, but it’s always the same person doing it).. When my mother calls up the district nurses during the day (or even if I somehow manage to), and a certain person answers the phone at the District Nurse’s office, I am lucky if I see anyone that day, frankly. I do not know who this person is, since she has never given her name to me — but she is… Surly. Dismissive. Rude. Downright Actively Refuses To Listen. Doesn’t Take My Situation Seriously Whatsoever. One time, I was in tears because of her — I was Desperate for someone to reinsert the Catheter ASAP, but instead, I was very rudely told that I was fine and there was nothing wrong, despite my telling her several times I was in great pain and in Retention! If she is one of the nurses, I hope she never comes to see me. She is awful, insensitive, cruel and rude.
On that day [that I cried], I was pushed back in the queue so far down, and I was in Desperate Agony and RetentionLong before anyone came. Despite first calling in at around 3pm with a Catheter Expulsion, she put me on the back-burner over and over, until I was on the Out of Hours List, and only seen to around SEVEN HOURS LATER.
It then took 20-30 minutes to get a Catheter back in, including requiring a total of 10ml (20mg) Extra of Oramorph to settle the Massive Spasms & Retention my body had gone into during that time.
The more the Catheter comes out, the more drained and exhausted, and non-functional from it, I become. This last time it came out, it was On. My. Birthday… at around 5am… I was seen to around 8:30am by Out Of Hours. The rest of the day involved anything but celebrating. Instead, on my 39th Birthday, I was upstairs in my room, crippled with the severe spasms and immense pain that comes with every new catheter, frankly wishing that I was dead. That is no way to spend anybody’sday, let alone birthday. And yet, that is my Every Day.
The knock-on effect of all this is Life-Changing. In a Very Bad Way. The Frank Truth is that I am Very Miserably, Permanently Housebound.All day, Every day. To Go Outside Now— it’s a minefield of balancing and battling a multitude of issues, other Conditions, medication, extra pain relief, Catheter Go-Bags, Extra Pads, and going only in reasonable reach of a functional 24hr A&E.
My Mental Health hasn’t just been affected — it has been Damaged Immeasurably… Or destroyed… My Confidence Just Vanished. Shame& Self-Loathing Runs Rampant. Utterly Depleted Exhaustion is a way of life. My Autism is permanently on a knife’s Edge of TMI Sensory Overloads and constant threats of Meltdowns, driven by the unknown, by chaos, by fear, by pain, by tumultuous things and never endingExtreme Stress. My Agoraphobia, BPD, and other Anxieties have flared severely and with a vengeance. My Depression is fully alive and well, along with despairandhopelessness. Once again, I struggle with my will to live… It’s too, too, too Exhausting to manage or even think about it.
The reason it quite often lasts more than a few days these days, is literally that I Do Not Move, or Gonywhere. Ever… Because I Just I Can’t. The result is that the lack of movement means the muscles around the catheter balloon are less likely to activate. It’s a double-edged sword…
And I shouldn’t be faced with either of those sides. Just trying to do anything, results in more expulsions, so I am forced to be as sedentary as possible, which I hate! The thing is, that if I ever need to do anything that involves a lot of effort, or moving around on the floor, it will not stay in. Not only that, but beforehand the pain and intensity of the spasms become immensely agonising.
It traps me inside a body that is already severely limited. Disabled my more than anything else does. Dictates Everything about me, my life, my family’s life… I am becoming Damaged and Traumatised by this, beyond repair. And yet, now, despite fighting So Goddamned Hard and being being So Goddamned Close… we have no ideaIf or When they might get round to doing this again for me…
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