OK, who am I trying to kid? First off, there is NOTHING humorous what so ever about vomit, nope, never, not even slightly….especially if I am anywhere in the vicinity of said chunder and particularly if I have to be involved in the clearing up process 😩
Secondly, who in their right (or wrong, very wrong) mind could even think of 50 separate ways to clean up puke (don’t flood me with ideas, I really DON’T want to know) unless you are some weirdo with a peccadillo for emesis (posh word for barf doncha know). If you fall into the latter category and have a predilection for all things vomit relating/inducing, I can’t decide whether you should move in next door to me so I can call on you in times of desperate need or whether I would like you to remove yourself from my blog readers 😉 I’ll ponder this further after a very strong coffee to reconstitute myself after this morning’s endeavours which as you may have succinctly deduced involved clearing up the outpourings of a poorly G Man.
Despite being the mother of 4 children, the oldest of whom is now 17 and started out his life as a prolific refluxer plus various nauseous pets over the years, I am spectacularly bad when it comes to the whole shenanigans associated with dealing with THAT bodily function – see I have to carefully allude to the literally stomach churning matter since even discussing it starts to make me feel more than a little queasy.
I’m not quite an emetophobe but probably not far off it. For example, there are many, many memories accrued over the years that I could recall in technicolour detail that involve vomit which really shouldn’t be the defining high point (or rather low) of the recollection:
The journey to school aged 9 when my brother and youngest cousin were playing some game in the back of the car involving bogies which prompted my brother to be sick all over my cousin, my cousin was then sick all over me and my dear Dad (he of the famed “what goes on in the car stays in the car” quip) instructed yours truly to clean everyone up!! This made me sick which then made Dad sick… you get the picture!!
Then there was the time hubby and I (pre kids/marriage) went on a fabulous trip in the Florida Keys on a glass bottom boat – totally marred by the cutest little girl shouting “mommmeee, mommeee, I blew chunks and look the fishies are eating it!!”..and sure enough the glass-bottomed and partially open viewing platform was no longer such a relaxing mix of cerulean blue and darting fish… cue me having to run on deck and gasp unattractively for air, hand flapping, rocking and muttering oaths. Unbelievably hubby still chose to marry me less than 2 years later…I know right? #whatacatch#
There was the flight home post an amazing sun-baked, cake and booze fuelled relaxing holiday in Eilat with hubby, kids and my parents when my eldest, then aged 10 and Minx, 14 months, were unwell (an understatement!) Poor H perforated an ear drum mid-flight and the pain made him upchuck prolifically, all over yours truly and Minx unable to swallow her saliva, having difficulties with increased secretions and oxygen saturations because of the reduced air supply eventually managed to bring everything up all over me.
That particular trip culminated in being met by an ambulance airside at Luton and being transferred with 2 poorly children to the local hospital clad in linen trousers, wispy thin short-sleeved blouse and flip-flops covered in the UNMENTIONABLE from head to foot. I had managed to grab our passports but no handbag or warm clothing so coming back from 30+ degrees heat to a miserable late night in Blighty in single figures temperature wise was never going to work out well anyway but quite how I persuaded the poor gentleman in the taxi to take us to our hotel once the kids had received appropriate treatment, medications etc, sporting ‘eau de vom remains one of the great mysteries of the world….
Then there was a Christmas Eve morning that still makes me shudder: Martin had been at work on an early shift but was due home mid-morning. Imbued with the festive spirit, (and I don’t mean having drunk it!) I decided to make a Bouche Noel (fancy way of saying chocolate Yule log) as a last-minute dessert.
All 4 kids were occupied, seemingly playing nicely (probably should have foreseen that as a clue!) so when hubby called me to say he had landed and was off to pick up his Mum, did they need to come straight home or could they pop to the shops, I gave a tinkly little laugh and assured him that all was under control. Oh how that would come back to bite me on the bum….
Festive songs on the radio, fridge fit to bursting, I set about with the flour, sugar, eggs & whisk… Shortly after I had prepped the mixture on to grease proof paper ready to pop in the oven, feeling smugly all Nigella, the shrill, panic-stricken tones of G Man yelling “Mummmmmmeeeeeyyyy” shattered my ear drums from 2 floors above.
All parents recognise the particular siren call that indicates real TROUBLE and possibly DANGER so I high-tailed it up the 2 flights of stairs half expecting to find a severed limb or child dangling from the ceiling light and whilst my initial reaction was relief that this wasn’t in fact the case, it very quickly turned to revulsion and then to despair when I realised Martin wouldn’t be home for some time to assist.
A bit of context: Minx being strong-willed had decided in the October of that year, before she was 2, that nappies were a no-no and with an early glimpse of the determination that has gone on to be both a blessing and a curse, set about the valiant efforts of toilet training herself (and with my reluctant support) with remarkable aplomb.
So on this fateful Christmas Eve, G-Man being ever helpful and adoring of his little sister had ‘helpfully’ brought her Peppa Pig potty in to his bedroom on the top floor of the house where they were playing with Lego.
Whilst I’m sure most of us would agree that our own poop doesn’t exactly smell of roses, it should be noted that Minx was taking numerous medications, several of which meant she emitted an especially noxious odour in matters of toileting.
Thus it was, eyes watering, ears ringing and nose almost bleeding, I greeted a truly horrific scene: Minx still astride her throne, 4 pieces x 2 squares of toilet paper that G had thoughtfully laid out in front of her. G sitting atop his cabin bed, Lego scattered far and wide… and copious amounts of vomitus. But to add to the awfulness, G having retched at the potty odour from on high had proceeded to be sick all down the side of his cabin bed, on the Lego… and worse still, atop Amelia’s head!! 😫😫 She then & I guess understandably in the circumstances, had also let loose.
By this point, the combination of aromas in that room were making ME gag. I threw open the velux windows as wide as they could possibly go & screeched at the elder 2 to avail me of plastic bags, buckets, disinfectant, paper towels and baby wipes STAT!!
When they arrived duly laden, they also began to heave. Major flaw in my plan so yelling afresh, I got them to leave the immediate vicinity
of hell and set to work cleaning up.
If you’ve never experienced the heinous task of gathering up vast amounts of sharp, multi-coloured pieces of plastic of varying sizes and shapes covered in vomitis (and why would you?!) let me be the first to tell you it proposes a logistical nightmare. How to scoop, run and get to sink without creating further devastation??
If I didn’t have the littlies to bear witness, I would have
cheerfully disposed of the lot in bin bags, nary a thought of the cost of those pesky bricks (and to be honest after 4 kids we had enough Lego between them to construct our very own Lego land anyway!!) but their beady eyes were following my every move and frankly I couldn’t face the thought of adding crying and snotty tears to the already over crowded bodily fluids in that room so I (ahem) sucked it up (not literally!!) and used a bath towel to traverse back and forth to the bathroom until the vile task was done.
Of course it wasn’t over then because I still had kids, floor, bedding etc to clear up. And so it was that Martin returned home some hour or so later to find me lying on the floor alternately sobbing and swinging from the cooking sherry, muttering dementedly. Even 6 years on, that has to be up there as one of the nastiest events of my life!
So without further ado, let me share with you some if not exactly cunning and mind-blowing tips, useful pointers I have gleaned over the years:
Make yourself reeeeeallly reeeeallyy bad at clearing up vom – but only if you have some (sort of) willing partner/friend
sworn enemy around to take over the clean up, in the hope that you will botch it all so badly, they will tsk tsk at you through clenched teeth and insist you GET OUT OF THE WAY AS YOU ARE JUST MAKING MATTERS WORSE stylee….. *whistles nonchalantly*
Pay someone else to deal with it. Extravagant? Undoubtedly but worth every penny if you are phobic.
Napalm – if in doubt and with no willing helper/employee annihilate the fall out zone… NB best to evacuate anyone nearby, (even if you don’t get on with the neighbours) check your home insurance policy wording first and see what your mortgage lenders T’s & C’s are if you have one.
Haz-mat suit – chemical showers and self-contained oxygen supply …. for obvious reasons… although difficult to come by…
Sell your house immediately and if news reports are to be believed, do it quick before we all end up in negative equity (be prepared to take less than market value anyway unless the buyers have a cast iron constitution on viewing the vomity areas)
Give your house away/to charity.…less likely to be fussy/complain and more willing to clean up.
IGNORE, DENY EXISTENCE, CLOSE DOOR, ACT SURPRISED, upon discovery with a n other present then revert to point 1….
Drink yourself into oblivion – preferably alcohol rather than any old household products, then tackle the task… NB careful judgement needs to be used to ensure you are the right side of not giving a hoot and merrily tipsy rather than blind drunk which potentially may see you adding to the mess…
If all else fails and you really have to do the clean up, arm yourself with gloves (plastic/rubber/latex NOT woolly!) plastic bags, kitchen towel, baby wipes, antibacterial spray, pet soiling clean up spray (it breaks down the enzymes and gets rid of that lingering sick smell that’s so difficult to get rid of) and mentholated vapour rub (e.g. Vicks/Karvol or similar) and smear liberally under your nose, septum and philtrum (medical jargon for the bit between your nose and top lip!) I decided to try that little tip after reading a book about how bad dead bodies that have been in water smell and the pragmatist of the story attending a post mortem using Anyway, I digress… Throw windows open as wide as you can for added ventilation (assuming there are windows) and leave the top off the mentholated vapour rub for emergency sniffing if it all gets a bit much. If you happen to have a room spray of some description, give the room a good blasting – even LYNX does the trick although I’m not sure that’s what the manufacturer intended it for 🤔 Once you have removed the worst of the offensive matter, carpet cleaner, preferably in the form of a dedicated machine rather than something you spray or sprinkle on is your friend.
Busy. Keeping busy. Every waking moment. Planning, doing, moving and shaking; albeit not in the term of “big business” more anxiety and jangling nerves that leave my hands jittering and spilling drinks, dropping bottles (gaviscon off the garage floor anyone?!) and generally causing me frustration and embarrassment.
My mind is never still, nor am I physically. Tick tock tick tock. I have come to the conclusion it is a protective measure: too much time on ones hands to ruminate is dangerous. Thoughts come unbidden. They still have a tendency to take me by surprise: a mental stock-take of the medicine cupboard; an appraisal of potential “weapons” – it’s amazing what you can do with the most run of the mill household items. The need is still there. Particularly on the bad days.
The house is clean, washing up to date. I have baked, entertained, ironed, meal planned and filed paperwork like a woman possessed.
I look well. I have make up on, painted nails, hair clean, smelling fragrant. Not only is it my armour, it is an artful misdirection. A new take on the magicians slight of hand. I show what I want you to see.
Slow down. Take time for yourself they say. Rome wasn’t built in a day. Rest when you can. Why? Will that be the magic fix?
There are yet even more people involved in our lives now, more meetings, appointments, frustrating phone calls & emails. Everything is happening and yet time stands still. Limbo. At the beck and call of authorities who push deadlines and time frames then move the goal posts at the 11th hour. I no longer want to be reasonable and considered yet moderation is key.
I am raging. I burn with white hot anger. It spills over to my every day life. Fragile children, already clingy, needy, uncertain. They demand, understandably, so much from me. I am torn in wanting to soothe, appease, console; but I am selfish. I feel conflicted and unsure of my approach with them. They want answers to promises I cannot make. My ferocious, voracious stance is only matched by my impotence and threatens our burgeoning protective bubble. The bubble is as delicate as those blown in childhood from bottles.
I am told I need to stop with guilt. Ha! It is a laughable suggestion: I am a mother, a woman & Jewish at that!! We give the Catholics a good run for their money where guilt comes in! If only chicken soup really did cure all ills. I’m sure the NHS would be most grateful though big pharma, maybe not so much?
Do not get me wrong. It is not all black. There are things to enjoy and things to look forward to. Realisations of how much friends and loved ones. mean. I hope they know how appreciated they are – both my virtual, on line support network & the flesh and blood variety. Guilt creeps in when I am too tired to reply or comment. I should be able to support others as they have done me but I cannot find the words, nor sometimes the energy.
I am in equal parts engaged and yet withdrawn from the real world. I keep waiting for the sense of normality (whatever that is) to resume. Instead I feel I am wavering, teetering. I am reminded of the Stevie Smith poem “Not waving but drowning.”
I’ve been truly over-whelmed and grateful for all the messages, emails, texts, visits and all round offers of support in the last few weeks.
If ever I needed a kick in the backside and a reminder why I am actually privileged beyond all doubt, the last 9 weeks have galvanised that thought process entirely.
In the most utterly dark, dismal and scary places I’ve inhabited over the last few months (both literally and figueratively) there have been sharply crystallised rays of light, a beacon if you want lighting the way and guiding me in the darkness. Cliched? Maybe. True? Certainly, at least for me.
It is well documented that the very worst of times can bring out the very best of people (I refuse entirely to dwell on the paradox that you may also see the utter waste of inhumanity and degradation) and from those that have stepped in at short notice to ferry the kids about, entertain them, help hubby in anyway possible, iron, wash, cook, clean, shop; family, friends, acquaintances newly made (rapidly turning into firm friendships)and friends of old both in the wider world and closer to home in Yorkshire, I am humbled and grateful.
There is so much I want to say about our “bigger picture,” what led me to the depths but for legal reasons I can’t. I’m sorry if that sounds a bit obtuse (I hate those annoying fb posts where people say something really leading, enough to pique your interest and then leave you dangling – probably because I’m nosy!!) but at this point in time, I do not wish to jeopardise our issues going forward (again, note the optimism; I cannot entertain the thought that things could crumble and leave us wading and wallowing in the 💩again….) Hopefully in due course I will be able to elaborate further and end with “and they all lived happy ever after” type scenario.
For now, and because frankly I’ve been a bit rubbish in the last few weeks at replying to people, I thought I’d try and sum things up a little – I guess this is the blog equivalent of either the (depending on your perspective!!) loved or loathed round-robin Christmas letter.
I think I mentioned a few blog posts ago that I was struggling to answer how I was feeling. I wanted to say what people wanted to hear. I know that with the best of intentions those closest wanted to hear “I’m fine” and see a steely grin of grit and determination. In truth, I was more of a soggy mess and I haven’t dared wear mascara in a very long time (way before my admittance) as even waterproof would have given in to the torrents of tears.
Fast forward to present day, I am testing out a proper reply to the question of “how are you?” During some points of some days I could honestly answer that question with “I’m fine, good even!” And I wouldn’t be lying. Other days, other moments it would be a more honest answer of “not so good” and you may end up with a wet shoulder if you proffer it for me to cry on.
I haven’t started ‘proper’ therapy in here as my team believe that the best place for that is once I’m home. So for now, I guess the best answer is I’m a work in progress. But an evolving one, striving to move forward and embrace myself imposed motto: if the glass is half empty, there’s always more room for wine!
Of course I’ve barely had a drop since I started on this road! Obviously you can’t on the ward but even on the occasions I’ve been out for meals or gone home for a night or two, I’ve only had a small glass, mindful that alcohol is both a depressant and doesn’t go well with hard core medication. (NB – I’ve checked with staff and I can have a little glass if I want!!)
I’ve not had huge epiphanies whilst I’ve been an in-mate but I have had moments of clarity and realisation. I’ve absorbed some of the comments from the psych team; turned & twisted them, then embraced them even though they do not always sit comfortably with me. Prickly truths and all that.
I’ve been shocked at times how devious my thought process has become in the months that I hit my all time low. Moments where I feel almost as if I’m an observer of myself. Distanced and looking on at the crazy woman who pontificates how she could sneak tablets and other items to harm myself back into the hospital, avoiding the inevitable bag searches (FYI, I haven’t, mainly because I’m more worried about other patients who may be even more fragile than I and the potential dangers I could put them in if they went through my stuff) when I return to the ward. Then appalled as my mouth seems to disconnect from my brain and share these thoughts with the psych team. The brain is screaming “shut your mouth!!!!”at full volume whilst the gob goes spouting on and I tell them the numerous and awful ways I could do various things. For obvious reasons I won’t elaborate on those. I’m told however by the team that the fact I’ve been honest with them is a good sign so I’ll hold on that as a win. Lisa 1…. depression/anxiety,/deviousness well if not exactly a 0, at least not wholly defining me.
I know I have a long way to go. I’m not naive enough to think that once I go home everything will be magically sorted and I can bounce back, go straight into full on mode as I had been doing for so many years. I am a realist. And I’m aware that being back at home will bring the stresses and strains of the real world and I may have blips. But that’s ok. With appropriate support, therapy and remembering not to run before I can walk (I’ve never been a running fan anyway unless it involved shoe sales or last orders) I’ve begun to accept that I can regroup, rebuild and restablish myself.
I know inevitably there will be days I can’t listen to the salient, sage advice – be that by necessity of stuff HAVING to be done (& there is a definite difference in what HAS to be done and what I would LIKE to accomplish in an ideal world) for with a medically complex child and one with autism there are always needs that are imperative and have to be addressed. But I also will acknowledge that if I don’t unload the dishwasher there and then, it’s unlikely to be a deal breaker, the world will not stop turning and the biggest issue I might face as a result is no clean tea spoons (where do they all go? Along with Tupperware lids and single socks that I know went into the machine in pairs!)
I’m a do-er by nature. It doesn’t sit easy with me to kick back, leave things to others (control issues? 🤔) and not organise, create, or be involved.
Guilt even now is a constant companion. Guilt knowing that Martin is (awesomely) juggling a stressful job, home, kids etc; guilt that those around me are having to pick up the slack; guilt that my loved ones are worried about me, my frame of mind and whether I can cope; guilt when Minx cries after a lovely weekend spent together but I have to return to the hospital. Guilt that I can’t read bed time stories or provide in person encouragement to our son doing A-levels. Enormous, crushing, at times all encompassing, over powering guilt that I can’t wave a wand and enable our autistic child to access not just what he deserves but needs in order to meet his potential. Even guilt that the poor dog is on his own for large parts of the day if no one is able to be at home with him.
However, guilt is not my friend and it is self destructive. So instead I choose to remember that I have made it out and about, home at times, walked the dog, (even if it’s been late in the day) cuddled my children, kissed tears, sore knees and sent messages, spoken words of support and suggestions of help and for now that is enough.
I am after all a work in progress ….
49 days – 7 weeks x 7 days. Counting down like a child to their birthday, Christmas or a holiday. But I am no child (despite numerous agencies doing their best to make me feel that way) nor am I counting down. Up I go – the number of days I have spent in crisis borne of exhaustion and lack of support. The ennui is heavy, a tiresome burden.
It seems to matter little which authority or agency is “in charge,” whether I’m sat in a boardroom with senior managers, in a tiny office, the quiet room, somewhere, anywhere on the ward; the words & noises wash over me like the droning buzz of bees; and each service offers up essentially the same platitude differing slightly by tone or word but there is no concrete solution offered. Sometimes pills to take off the edge.
I am calcifying. Feeling my bones beneath me fossilising and yet melting at the same time but there is no release.
Small comfort in tiny things – the dog, always happy to see me, the children, hubby, close friends and family texting/e-mailing/messaging for a progress report. It is a kindness but I no longer know what to say. What do they want to hear? I think carefully. I should not forget the shoes I suppose.
I await instruction – get up, medications, get washed & dressed. Plaster on the smile & the make up. This is my armour but the smallest of fissures show beneath the veneer. Eat, sleep, repeat.
Don’t look closely. It is a death mask. There is a coldness, a distancing. Who is the person staring back at me in the mirror? It surely is not I. That woman looks so “normal” Ha! Appearances are deceptive.
I am a chameleon but I do not change my colours for others, for protection. I am beige, blending in, don’t stand out. Does anyone even see me or just what they expect to see?
What to do? It has not been successful so far – attempts: 2 – Lisa nil. My mind is jabbed sharply, pointedly by my protective measures – my husband, children; I am aware of the statistics of those who do succeed and the increased risk it burdens on my own flesh and blood. Yet I cannot be, cannot exist as is. It is not survival. Purgatory I think.
Perhaps if I contine to calcify, fossilise, blend, I will be re-absorbed; a form of osmosis?
” There are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don’t know we don’t know. ”
Credit: Secretary of Defence Feb 2002 – Donald Rumsfeld
Why the above quip which I’ve shortened to meet my own needs? Well as a very different Donald (to the tangoed-recently US elected one) said it so well…. I’ll explain further down…. hopefully I’ve peaked your intrigue and you will keep reading!
Friday 28th April 2017 is a day to celebrate for Undiagnosed Children in association with SWAN UK who fall under the umbrella group of the Genetic Alliance.
Not only is this a fabulous day to celebrate all things unknown, rare, unique and downright puzzling, (with our children, not all the wonders of the world!!) it’s a day to raise awareness amongst friends, family, professionals in any area of the medical field and wider still.
Most importantly: our big ambition this year – to raise awareness, provide support and a place to feel at home for all those parents/Carers who are bringing up a child without a medical diagnosis.
To quote directly from SWAN UK:
Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. We want it recognised that being ‘undiagnosed’ is not always a temporary stage; the genetic cause of some conditions may never be known. We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support both in hospital and at home.
Surprisingly and sadly, there are still families out there who aren’t aware of the invaluable work and support that SWAN UK can offer them.
In some cases, SWAN UK has literally thrown out a lifeline to desparately tired, lonely, scared and isolated people who feel they have nowhere else to turn. And of note, SWAN UK is the only support group in the UK dedicated to families raising children without a diagnosis – we can offer 24 hour support (give or take) since whilst all our SWAN children have varying difficulties and concerns, a large majority seem to share the view that sleep is the work of the devil so you can often find a parent on line offering or asking for support or just catching up on info they haven’t had time to digest during the day!
Of course, raising funds to support the emmense work load of SWAN UK is also really important but I’ll get on to that in a bit.
Those of you who have followed my blog for a while will probably be able to quote back many of the statistics I’m about to blurt out; & yes I may have banged on about this one way or another every year for the past few in connection with celebrating Undiagnosed Day (and often times between) but you dear reader, even if you are personally unaffected will likely know a family with an undiagnosed child or will come across one (or more!) in the future.
Just maybe you can be the one to offer someone out there light in the darkness and point them in the right direction to access the crucial support and signposting they need and deserve, particularly in the early days of their journey be that before birth when pre-natal scans pick up on possible genetic issues, those early days post birth when it becomes obvious that something is not quite right with their much longed for, hugely anticipated tiny baby or as in other cases when a seemingly typically developing child begins to fall behind their peers or shows regressive behaviour.
From personal experience I know how tumultuous those feelings can be; how overwhelming. Just like the (approximately) 6000 children born in the U.K. each year, our daughter has a Syndrome Without A Name.
My little Minx (not so little now, a whole 8 years old!) was born almost at term and despite a complicated pregnancy, seemed utterly perfect to us in every way. She passed her paediatric discharge – if awards were given, hers would have been gold (proudly boasting mother) but she really was the cherry on top of our cake.
A little girl after our amazing 3 boys (not one of which we would have changed at all; we were never “trying” for a girl and personally, unless there is a very good genetic reason for sex selection, it’s a step too far for me) but it was so exciting to experience, even from the very first day, the differences of having a bundle of the female persuasion – nappy changing = no peeing in the eye moments as my dear boys got me so many times over the years for a start… although cleaning poop out the girly bits was…. daunting…. I’ll stop there rather than make anyone think too vividly.
Our first few weeks in amongst the haze of feeding, washing, attempting to sleep when the baby slept – (i.e. never) and generally fight our way through the sea of all things pink that friends & family far and wide sent to us (yes I know it’s a stereotype and girls, for that matter boys, can wear any colour but did you really think with Minx being the first great/gran/daughter after 3 boys she wasn’t going to be in dresses and frills and shades of pale pink, lilac and basically looking like an explosion in a pink workshop?!)
However, as a 4th time Mum I had a serious case of “the niggles” even in the very early days of the Minx having been brought home….she cried virtually constantly (but not like a collicy baby, I’d had 2 of those) she started feeding well but would then cough, choke, delatch and occasionally snort milk out of her nose (very different to her greedy brothers who had trouble latching initially but would soon settle into rhythmical suckling until they had refuelled) and she held her head/neck/arms so awkwardly.
I’ll spare you the VERY long story that brought me to this part of our journey as best I can (if you would like to, you can read some of my earlier blog posts and discover more about our journey to date).
Suffice to say mother’s intuition is a powerful thing and over the years we have collected a myriad of teams, specialists, equipment and partial labels to encapture Minx’s difficulties but like that dastardly elusive last piece of the jigsaw puzzle, we don’t have the complete picture. In fact as it stands at the moment we don’t even have the picture on the box – frustrating & like working in the dark.
I can give you some examples of her varying issues:
- Upper limb arthrogryposis
- Lower limb hypermobility
- Blood sugar instability
- Possible growth issues
- Gastro esophogeal reflux disease
- Dysmotility of the entire gut/colon/bowel
- Low heart rate when sleeping
- Pain (in the gut & bowel
- Chronic constipation requiring stoma use to manage
- Congenital myopathy
- Neurogenic issues
- Severe feeding difficulties necessitating gastrostomy feeding tube to give specialised milk during the day & overnight
- Swallowing difficulties
- Muscle weakness and fatigue
- Food allergies….
Have I forgotten anything? More than likely! We see that many specialists and consultants in 3 different hospitals and use multiple pieces of medical equipment, aides, pharmaceuticals and so on; sometimes it’s hard to keep track!
Minx has a wheelchair, a stair lift and bath lift for when she’s too tired/unable to get in/up/out or mobilise for herself. And who could forget the amazing self-cleaning toilet with padded seat and washer/dryer function, complete with arm rests, feet support and a medical pillow for comfort whilst “performing”. Honestly, it truly is a marvel to behold… and I’m told in Japan, it’s particularly de rigeur to own a similar commode, albeit not usually for medical purposes.
So back to Donald Rumsfeld’s now infamous quote, which yes, I’ll admit I have chopped up a bit to suit my own purposes, there are lots of things we know about the Minx but there are equally lots of things that we know we don’t know. The unknown unknowns if you will.
So many of her issues fit neatly together and others frustratingly don’t. As has been much muttered by her neuromuscular consult (complete with wringing of hands) “but we just don’t SEE this presentation of neurogenic and myopathic symptoms and difficulties”
Except of course you do, because Minx presents with them. So it’s back to the drawing board, tearing up the medical text books and much head scratching – although these days it’s a bit more technical than that and there are some fantastic genetic studies that we have been invited to take part in. Largely, down to information provided by SWAN UK, I knew which ones might help us get some answers and who to approach to see if we could get on to them too. If you want, you can learn more here: https://www.ddduk.org
Also: the 100,000 genome project https://www.genomicsengland.co.uk/the-100000-genomes-project/
Minx has been tested over the years for various myasthenia genes, myopathies and so on but the above 2 studies give us our best shot of learning what Minx’s overall condition is.
To some extent, it’s unlikely that having a formal diagnosis will change much in terms of treating Amelia and her difficulties. Unless it’s something that a very specific medication or therapy can improve, then it’s extremely unlikely that what she has is curable – in our life time and maybe even hers. But it does give hope for the future, for gene therapy, for others following our pathway and for siblings to make informed choices in deciding whether they want to know if they are carriers or affected by the particular genetic fault. It offers hope, choices, plans and preparation. Maybe far off for now but gaining ground every day.
It should be noted that our family wouldn’t change a thing about our feisty little Minx (except maybe her stealing my MAC lip gloss & suede boots) Whilst we all wish she didn’t have pain, surgeries, physical weakness and so on, some of those exact difficulties have helped shape the amazing, bright, sparky and self assured young lady she is becoming, not to mention the dab hand she is becoming on using technology to help her in every day life – I-pads, tablets, lap tops and PC’s are increasingly being utilised to assist her at school and in daily life.
Maybe my point about not changing her sounds odd? Most assuredly, I wish she and many of her SWAN UK comrades didn’t have to go through the dark, trying, and in too many cases, tragic outcomes I have witnessed over the years.
There is something fundamentally, inherently wrong about a parent out living their child. It is not the natural order or design of this world and is beyond cruel to far too many of my contemporaries, friends, people I have formed and shared extra special bonds with over the years. Some I have only ever had the pleasure of meeting virtually through our SWAN UK on line community, others at the plethora of events that SWAN UK hold every year to give a glow to our special needs kids, their oft neglected siblings and exhausted but exultant parents who meet for regular coffees or stay and play type events. https://m.facebook.com/SWANchildrenUK/
Please do go and have a look at our website for more info about the group and what we can offer https://www.undiagnosed.org.uk/about-us/
So what can you personally do you may wander? Well, you could share this blog post on various forms of social media, change your profile picture like I have done to raise awareness of SWAN UK and Undiagnosed Children’s Day – I’m happy for my profile picture to be shared but please check with other people before sharing their stories or pics. Get tweeting far and wide – celebs, politicians, the rich and famous to raise awareness (and maybe even ask them ever so cheekily for some cold hard cash!)
Get Undiagnosed Day trending (I’ll pretend I vaguely understand all these terms in connection with social media) because I know that one is important on twitter but I’m not too hot on all things tech. To those of you who are, I salute you – help this Luddite out and get sharing far and wide.
As well as raising awareness, WE WANT YOUR MONEY!!
For more info, ways to donate etc go to the SWAN UK page or public face book page. You can donate via text/post/online or even fund raise for us directly!
If you would like to make a one off donation you can also do this via Just Giving or Virgin Money Giving or text SWAN11 plus the amount (up to £10) to 70070
Online Donations You can donate through our page on Virgin Giving or Just Giving. If you are a UK tax payer don’t forget to tick ‘Gift Aid’ as this scheme allows us to claim tax back on your donation, making every £1 you donate worth £1.25.
Little heroes can fulfill big dreams and ambitions with your support!
Thank you 😘
I’m pretty sure that’s not the most inspiring name for a blog post, nor one that makes you think “oooh, this will be a rip-roaring laugh which I must sit down and digest with lashings of ginger beer & a cream tea (a touch of the Enid Blyton’s has come over me this morning; I blame the meds!)
Since I seem to have set many a precedent with my blog posts using song titles and this rang a vague bell (again could be the meds/bleeps on the ward, my imaginary friends, who knows quite frankly?) I thought I’d better google in case I needed to credit anyone specifically. Turns out somewhere along the way all “dat wonga my main mans (parents) what spent on ma h’education over dem years” did somehow pay off.
Not only is it music related but classically so no less! Something to do with Wagner’s Tristan and Isolde…. but regrettably that’s about as far as my musical knowledge goes (sorry Dad, I did try).
Anyway, as so often happens when I start blogging I’ve gone far off track of what this (puff) piece is supposed to be about…. & despite the dreary title. I hope it will make you laugh if you can muster the energy to read on further.
The last few days have been hard work; assessements by various Dr’s, psychiatrists, psychologists, nurses – even when you think they are not watching you, they are; (not in a nasty, obsessive way, just part of their job to observe your mood & interaction) plus there are cameras in every communal area so it really is a lot like “The Big Brother House” (only the peeps in here are far more entertaining & definitely not doing it for the publicity.) There are some horribly sad, tragic situations and others that are too comical for words, and I really mean that with the kindest of intentions. I would not be so disrespectful as to target those with mental health issues as it’s a very low path which I can safely say from experience.
The last 4 days in particular have been very rough, difficult and involved copious amounts of crying (me not them) tissues and snot (me again, v attractive obviously) restraint (on my part not to physically bash one of the Doctors who tried to tell me I didn’t know my own mind 🙄) and quite a lot of drugs. Legal ones for clarification.
Over the last few days I got put back on 15 minute observations and 10 minute obs when I was in the bathroom – I honestly had no intention of drowning myself in the u-bend of the loo but knowing you have someone hovering nearby shouting “are you ok” v loudly and as if you don’t speak English (you know that thing we do to foreigners where we speak loudly & slowly at them in our own mother tongue because that helps them understand sooo much better 😳🤔- yeah, like that) well it’s not very conducive to “performing” on the loo, be that a tinkle or otherwise & I find myself saying sorry to the environment for running the taps on full to drown out any noise I might make to help me “go”.
Anyhoo, during this rather unhappy period, I decided to have a bath at 10pm, just before I take enough meds to knock out a 50 stone gorilla – see proof I’m thinking sensibly, risk aware etc…. no point having the bath AFTER taking the knock out stuff – if I do intend to “off” myself I have no desire to be dragged, in the buff out of the bath whilst some overworked, underpaid chronically tired Doc attaches chest paddles/suction (whatever, far too much Casualty/ 24 hours in A&E watching!) to bring me back, whilst the rest of the crew attempt to help, keep away the gawkers… and frankly the NHS staff have enough paperwork & forms to fill in anyway so I’m trying to be considerate on many levels.
(A refresher – quite literally!!)
Those of you who have stuck with me & followed my blog posts for a while will know that I have an (un) enviable reputation when it comes to matters of personal hygiene in hospitals far & wide across the country.
From flashing a junior Dr & several other staff with the flannel sized bath towel running down a corridor several years back, to a surgeon quite literally knocking on my bathroom door to chat as the mini window of opportunity I had chosen to attend to personal hygiene had been thwarted by someone else being in the bath & by the time I got in, dunked to the shoulders, the surgeon was back telling me things (for once) had gone much better & easier than expected & could I please step out the bathroom for a catch up 😫
Plus there are the times I have outed my lack of clean knickers on the Great Ormond street fb page by accidentally having location services switched on to my instagram post showing a pile of dirty laundry, a mini bottle of prosecco & a pile of brand new snazzy pants ( 3 for £10 in New Look = saving money) for all and sundry to giggle over… my incompetence on the bathroom/laundry debacle is legendary & comedic on equal measure to most (unless you happen to be me or the aforementioned poor professionals, again I’m sorry!!!)
Determined as I was to wash the stink of hospital off me & relax with a Lush bath bomb, despite the intrinsic 10 minute door knocking & calls of “all ok in there” I hadn’t factored in the Machiavellian taps… and rooky error to boot, had left the bath unattended whilst I went in search of towels (snaggled 4, no intention of scaring anyone with the boobs or lady bits issues this time)
I gathered my clean pj’s, make up remover, cleanser & flannel feeling fairly smug – Beaton, you’ve got this covered – until I sauntered back to the unmanned bathroom… at which point the words “holy f*#k” may have been uttered…
You see although the bath itself only contained about an inch of water, the rest of the bathroom was knee height as the spiggoting (not a swear word!) tap had done its damndest to flood the place!! By this point, water was creeping under the door, over my clothes & slippers left on the floor, the clean, previously dry towels & rising by the second over the sanitary bin (🤢)..
If you’ve ever watched the film Titanic with Kate Winslet & LeonardoDe Caprio, you may recall that image of all the poor people in steerage up to their necks in water being locked behind a gate. It felt like one of those moments….
In my head the theme tune to the Old Spice advert (Carmina Burana) complete with the crashing waves was playing at epic volume https://youtu.be/6rbZr7YoqK0 just in case you need a reminder. (Courteousy you-tube)
By this point, uttering a lot of very rude words as quietly as I could to avoid alerting staff, my only objective was to turn off the sodding ba$+arding tap as quickly as I could and to shove a towel at the doorway to absorb as much water as possible before it leaked into the hallways causing the medics to call a code red (or something) I can tell you this was NOT doing much for my already out of control anxiety & I suspect if anyone had taken my blood pressure, I would have been lying on a crash trolley somewhere.
So at this point, all 4 of my lovely, pristine-still-basically-handkerchief sized bath towels were wringing wet, there was a water mark on the walls & then the ever present “all ok?” was gently wafted from the other side of the door.
At this point the temptation to wail noooooo, gibber and rock quietly in the corner seemed like a good call – after all they’d seen me at my lowest ebbs, it was just a case that they were going to have to view a different kind of lower ebb since I had no dry towels or clothes to preserve the very little dignity I have left….
But somehow my inner Wonder Woman” (well really in my current modus operendi, I’m more like the sad, bald, partially limbed Barbie that the nasty boy in the original Toy Story feeds to his dog but I digress) trilled out with a light & breezy, “all fine, nothing to worry about!
Knowing I had a 10 minute window of opportunity to sort out this shambles, I started winging out towels, throwing them back on the floor in the vain hope they might absorb a teeny bit more. Then I turned to the loo roll and paper towels which had not long been refilled and basically, desperate times call for desparate measures so I did what I had to do…. think the domestics were most surprised to find pretty much the entire bathroom supplies that had only been restocked at 6:30 the previous evening were almost gone by 7am but it’s not been mentioned.
After the exhausting clean up process, frankly the last thing I wanted was a bath in an inch of water… but I was more than a bit stinky and damned if that inch was going to waste (ahem!!) Nor was I taking any further chances of running more water.
So when I had to shuffle out of the bathroom a few minutes later in wet pj’s and scurry (slopping noises down the corridor) to my cubicle, I changed as quickly as I could.
The trilling Geordie voice from the other side of my cubicle curtain “oooh I bet that was a nice one pet, you were in there for ageeeeesss!!!” was met by a faint moan on my part & in hindsight, I probably didn’t need the knock out meds prescribed of a night time… but I figured a nice dreamless sleep might fix things-somewhat…. although I did have very vivid dreams involving the film Point Break…. can’t think why…..
(Nb reconstruction for dramatic purposes only – no towels, clothes, doors or bathroom floors were harmed in this remake….although a few paper towels willingly sacrificed themselves)
So I might still be as mad as a box of frogs… but at least I can laugh at myself(ish)…