How do you sleep at night… part 2 😡😡

I’m a bit less ranty today but no less passionate so let’s get this done and written before I lose my impetus… never mind the will to live. 

I like to think I’m currently  channeling my inner Taylor Swift and her pals in the Bad Blood music video: 

(*above image may be subject to copy-right) 

But in reality I should be so lucky. I’ve spent far too much of the day with my youngest son on a hospital ward, wallowing, sat on my butt, scrolling social media and eating chocolate. Less Swift, more sloth;  I can feel the helplessness wanting to swallow me up; shut me down again. 

(sorry sloths everywhere who are probably outraged at the comparison) 

I’ve been extremely touched how many people have commented/got in touch or shared my previous post. Thank you. 

I wish what I had written didn’t resonate with so many but I am also grateful for the support and the sense of solidarity. 

I recognise the issues facing my family are far from unique. Judging by support groups I belong to, friends, social media and so forth, this utterly deplorable battle for services to provide and protect those most in need, those who don’t have a voice of their own, those with the least ability and energy to fight are being waged up and down the county. 

Whilst the difficulties faced may be slightly different, they all share a common denominator: the vulnerable, those in crisis, those society should be protecting and empowering. 

Forgive my Whitney Houston moment but our children ARE the future and if we don’t invest in them and secure the best possible pathway, what hope is there for society moving forward? 

I also know the elderly, infirm, mentally unwell and so on deserve their cause being championed in the same way. 

I recognise on a deeper level my attitude is simplistic and that something policy-wise, fiscally, has to give or change dramatically going forward. 

How do we achieve this? I don’t know; I never professed to have the answers as to what this should look like in terms of the bigger picture. 

All I do know is a seismic shift is necessary, society is screaming out for it. How we approach this, how we can achieve it is for somebody/ies far more qualified than I. (Otherwise I probably should be standing for government….🤔) 

The demands of a large, aging population who are living longer, the epidemic of obesity, drugs/alcohol/cigarettes, the advances in medical science meaning those who once would have met their maker because of cancers, heart disease, prematurity of birth and the terrifying increase in the so far unstoppable dementia are well documented. There can be no escaping the fact that expectations and demands for provision will increase year on year. 

All the while the funding for front line services is being reduced or in some cases done away with all together. Departments asked to find millions in cost savings, balance the books and yet still pull it out of the bag, somehow. 

Morale is at an all time low as evidenced by the mass exodus of Doctors, nurses, emergency services and so forth. 

I’m not naive. I know the country is on its knees financially and floundering in uncertain times: Brexit, the future of the NHS and government but the refusal to engage, instead throwing up wall after wall, challenge after challenge means there’s less money in the pot to provide even the most basic of services. 

Is it just me and people like me that can see the irony in money being spent on disputing and denying care instead of the care itself? 

We are informed of cuts to services/benefits/ grants every time we switch on the tv, open a news paper.  The effects of austerity on all aspects of social care, health and education (and of course the ripple effect on our police force, armed forces and such like) have been hiding in plain sight for many, many years

Why is it that the major political parties seem far more invested in scoring points at each other’s expense and plotting a coup to oust their leaders than implementing change and securing services for the greater good? 

I want to believe the bean counters genuinely care, that there is an appetite for change but they have become so blinded in covering their backs, their departments and their funds, (actually the tax payers funds) they have forgotten their original purpose. The other alternative: that they enjoy the power trip, playing god and causing abject misery has to be some dystopian fantasy…. doesn’t it?…

I do know that continuing with this ostrich style approach, riding rough-shod over those of us trying to cope day in, day out and strangling us in a bureaucratic nightmare, (presumably in the hope that parents/Carers will give up) ISN’T helping. 

If as much effort and emphasis was put into providing and fulfilling services, identifying and enabling children, parents and the wider family before they reached crisis point a great deal more would be achieved. 

I can’t help thinking that in fact the overall financial outlay would ultimately be a lot less, nevermind the impact and fallout on the family which ultimately add to the spiralling costs. 

How much do local authorities spend on retaining expensive legal council, defending cases and when challenged by parents on the attack, concede a case with moments to spare? The costs in such situations are not merely financial.

Whilst I cannot go into the ins and outs of our case in detail at the moment (until we receive the decision of the SEND tribunal I don’t want to prejudice any outcome) I can relate some of the damage and the wider implications the delays have caused us so far: 

  • Inability for autistic child to access mainstream education since March 2016 resulting in high levels of anxiety, depression leading to self harm and suicidal idealisations necessitating multiple in patient/out-patient hospital stays
  • Provision of interim specialised education package with 1:1 staff ratio/on occasion 2:1 to provide up to 2 hours study per day (where possible round child’s anxiety) 
  • Child unable to access GCSE subjects/make option choices
  • Involvement of multiple agencies on numerous occasions – police, accident & emergency, CAMHS, children’s social care, Young Carers, autism out reach, fostering team and foster carers
  • Local authority (LA) assessment and review officers to prepare EHCP, take information to specialist information panel on multiple occasions, liaise between relevant parties, issue consultation paperwork to potential schools 
  • Assessment of child by educational psychologist for local authority 
  • School transport (single occupant) with escort to ensure autistic child safely taken to and from school
  • Maternal mental health crisis triggered, medical intervention required,  inpatient psychiatric care for 3 months, multiple medications and therapies
  • Community care package to support maternal mental health, crisis team management, out of hours services 
  • Care package from disabled children’s team to provide direct payments in support of care for medically complex child thus enabling sole breadwinner to continue to work 
  • Emotional support to other children in the family necessitating pastoral support, teachers from 2 separate schools reporting back on children’s well-being and attending looked after children’s (LAC) team  meetings, approximately every 6 weeks
  • All children in family requiring support and intervention by CAMHS  to address trauma and ongoing psychological fall-out
  • Family engaging professional legal team and independent educational psychologist to prepare case for tribunal
  • LA engaging in-house legal advice and support
  • LA acquiring professional legal counsel to present at tribunal
  • Convening of independent tribunal and panel member(s) in official court to hear evidence from family and LA surrounding case 

How much does all of this add up to? This is not an exhaustive list and no doubt  there are things I have unintentionally missed/forgotten but I think it is a fair representation. It’s pretty depressing reading isn’t it?  

Has what I’ve detailed shocked you? We are just one family in a cast of thousands, dare I even say millions. 

Unless you or a loved one need to avail yourself of services, you assume it happens to others; not to people like us. 

We are now the others. 

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Comfortably numb…

Life, at the risk of sounding self indulgent and more than a little self pitying can best be described in the title above. At least for the time being and that’s ok with me. Comfortably numb sits comfortably. 

I have loved this amazing song for many years but, you will forgive me if I defer to the Scissor Sisters version and the soothing warbles of Jake Shears than the sanctimonious, anti-Zionist (read anti-Semitic no matter what he may say) Roger Waters opus. 

It’s a song I have sang along and danced to in the past. Briefly thinking on the lyrics only in so far as much as trying to remember them for appalling, impromptu karaoke. 

But of late, they are strangely soothing and a fitting discourse of this time in our lives.  

Urban Dictionary’s top definition: http://www.urbandictionary.com/define.php?term=Comfortably%20Numb

Doesn’t that describe the perfect “safe” place? Removed from the sharp stabs of real life, set apart from the disappointments, the difficulties, the knocks and the scrapes. And if that is so, then comparibly the edges dulled off the fun, frivolity, light and laughter?

Does this make me melancholy? I do not think so. Does it make me less able to participate, share, enjoy? Perhaps. Nonetheless I will gladly settle for this numbness. There is little that can surprise me or scare me in this half life. It allows me to maintain a sense of glass half full. 

I realised on our journey to hospital this morning that my benchmark for stress, nerves and worry is very different to what it once was. 

Not to take away from any parent/carer watching their loved ones suffer or go through scary, frightening procedures but this is our norm. Different child, different hospital but largely the same. 

Did I appear to the nursing staff cold, unfeeling? The soft “are you alright Mum?” after the anaesthetic had been administered and my not so little boy’s head gently laid back upon the bed, a kiss on his still baby-soft skin , barely registered. I was dry-eyed and calm. I have walked this walk, talked this talk more times than I can recall. Is that admission in itself shameful? Should I know, unbidden, which child, what number anaesthetic? Why? 

I find myself waiting, pausing for a beat, attuned for updates. News of medical tests, results, tribunals, social care, and so forth; the envelopes received with post-marks from various hospitals, the no caller ID flashing up on my mobile, the ping of an email: I am both strangely alert – a cat on hot bricks and yet not really surprised by the lack of information.  I’m a bit bored of it all. Blanketed by ennui. 

So for now I will embrace the numbness, float along. The bumps are smoothed out. Temperate but equally obdurate. 

Smoke & Mirrors…

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.”

 

Calcification 

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 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:

  1. Upper limb arthrogryposis
  2. Lower limb hypermobility
  3. Blood sugar instability
  4. Possible growth issues
  5. Gastro esophogeal reflux disease
  6. Dysmotility of the entire gut/colon/bowel
  7. Low heart rate when sleeping
  8. Pain (in the gut & bowel
  9. Chronic constipation requiring stoma use to manage
  10. Congenital myopathy
  11. Neurogenic issues
  12. Severe feeding difficulties necessitating gastrostomy feeding tube to give specialised milk during the day & overnight
  13. Swallowing difficulties
  14. Muscle weakness and fatigue
  15. 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 😘

Melancholia….

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. 

So back to the bath….  some time last week, you may recall I posted a pic of the demented bath taps in this place 

(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)…

Shiny happy people….

I’ve noticed a theme in many of my blog posts – the titles often spring to mind based around music. 

Although I’m not quite sharing the lyrical prose, more precisely the sentiment behind Shakespear’s line: “if music be the food of love, play on!” I think it’s apt that music evokes so many thoughts, memories, emotions (good & bad) nostalgia for the past, excitement for the future (nothing better than THE song of the summer fueling the count down to an epic, sun-drenched, sun tan lotion coconut wafting, possibly cocktail inspiring yearning). 

For those of you who are mere whipper snappers, Shiny Happy People was brought to us by R.E.M. (Have a google, promise it’s worth it) Apparently released in 1991 (now I feel REALLY old) the video even now brings back memories & the halcyon days of having learned to drive, gaining the first tastes of freedom as my parents allowed me to stay out at parties providing they knew where it was, if there was a responsible adult there etc) & the realision that I was on the cusp of adulthood, (although A-levels were less fun)  In my present frame of mind how over-rated THAT adult bit turned out to be…. but it would be wrong to be all doom & gloom & as a rule of thumb, I think those who know me fairly well would have, up until this recent blip (understatement extraordinaire) have considered me generally an optimistic, enthusiastic, life embracing & vibrant (not necessarily alcohol induced on the last part – stop rolling your eyes at me! 🙄) person.

Since I entered the hospital (spa) i’ve many time been asked about the Lisa of old by staff and inmates. What was I like before I crumbled? What did I do with time & to describe my qualities good and bad.

I think the person I used to be tried her best, be that whipping up cakes, volunteering for various jobs/school activities/charity work, getting Minx’s request for 10 different shades of nail polish on each set of hands/feet PERFECT, trying to interject exactly the right amount of enthusiasm & salient nodding to G-man’s newly created mind craft world number attempt 24598645 and basically, feeding/clothing & generally keeping on top of things as  best I could on the home/medications/therapies & ENDLESS meetings and appointments front. Any day we made it through with minimal maiming/moaning and a modicum of decorum, applied equally to kids, spouse or the fur babies was a day to be if not exactly celebrated, vaunted as a win won.

Most of all, I’d like to think I was a friend to many. One that could be confided in, counted upon; secret keeper, confidant, being around through the highs & the lows – proffering the cake & prosecco as needed.

I hope I have been a decent enough mother/wife/daughter/sister/auntie etc & been there for those in need be that family or friend.

I recall the old Lisa being terribly nervous but honoured to stand up & speak to a roomful of strangers at the Rare disease conference https://definitelynotthewaltons.com/2016/01/15/put-on-your-red-shoes/ and   https://definitelynotthewaltons.com/2016/01/20/d-day-red-shoes-part-2/to a room full of geneticists, high powered medical bods & patients & families about my family experience of raising an undiagnosed child.  

I attended workshops, coffee mornings, presentations & felt confidant enough in a subject that I was passionate about to make my voice be heard and counted. 

But that Lisa isn’t me, at least not now & doesn’t feel like it ever will be again. (Don’t you just love a pessimist?! 😳) 

Group workshops and therapy have tried to convince me she’s still somewhere there, buried under some rubble, a bit dusty, rumpled & crumpled but nothing that a quick febreeze and a dollop of self belief won’t sort out; however at this very moment, the disconnected, discombobulated partial person I am seems far removed from the one of old.

So that leads me on to my next party piece favourite, with a slight play on words; “if you’re happy and you know it…. take your meds.” Meds are my friend right now. I *may* have alluded to this once or twice (ahem) in the last 2 blog posts and I am quite certain there will be many readers out there shuddering at my cavalier attitude to essentially keeping the pharmaceutical industry in filthy lucre. But a valuable lesson I have learned in these darker days is that whatever gets you through is whatever you must do.  

The Doctors and nursing staff keep a careful and watchful eye on what you take as stated by the consultant and what is written up for PRN (as needed) and if you start getting a bit trigger happy on the prn front, they are not going to dish them out like smarties and are very keen that you try distraction therapies, chatting things over with your designated care-coordinator or even something as simple as a hot drink, walk in the gardens before willingly handing over the gooood drugs.

It is fair to say they leave you a little floaty, present but not quite there, comprehending of your surroundings & those of your fellow inmates but all the edges are softened, flattened & much less likely to leave me blubbering pathetically and hoping I’ve rammed enough tissues in my pockets before having to resort to wiping my nose surreptitiously on my sleeve (eewww). 

Today has necessitated plenty of tissues, prn & if I could pull it off pop star sun glasses worn at ALL times inside and out plus multiple avoidance, floor gazing & a pretense I’ve gone slightly deaf. 

Unbelievably, my 28 day (spa) hospital stay is coming to an end this Wednesday and despite feeling far from ready, able or even slightly like I can cope, the health insurance have not agreed to continue paying for care. 

Apparently after 28 days, I’ve had my lot & should be back to my usual, sparkly self. (Must make a note of that, can be my new daily personal mantra) 

My consultant did her level best to persuade them I am far from ready, she argued for day patient therapy & that was met with a resounding no. They even tried to secure me on-going therapy as an out patient since this should be covered under a separate claim area but apparently “the computer says no.” 

Since costs in a facility like this are in excess of £3000 per week, we are not in a position to stump up the moola for a continuing stay. 

Apparently the kids still need all their vital organs & my liver/kidneys will be more likely preserved in a prosecco/formalyhyde combo – pre admission obvs… haven’t touched a drop in here & even for the few days prior to admission – in fact still not entirely convinced that my significant jitter/tremor commented on during early sessions wasn’t down to prosecco withdrawal symptoms…. NB – entirely joking; despite my reputation as the lush of FB, I’m generally a one glass a night type girl and for clarification purposes, I mean a small, glass not one that can fit an entire bottle!! So purely on a practical front I can’t ebay anything off…

So what now? Well the consultant has asked for the crisis team from the NHS local team to review me urgently tomorrow & try & find me a bed in the local NHS hospital. 

The thought of having to go through this all again with new staff, therapists, teams etc is exhausting beyond belief & I’d be lying if I said I wasn’t terrified. But my bigger fear is that there won’t be local bed space & I will be shipped off to Scarborough or such like; being this is more than an hour away from the family home & the logistics of trying to retain & build up some kind of relationship with my kids, puppy, not to mention hubby, this is untenable as an option to me. So I will be left with the only option to return to the family home. 

Do I feel ready? Hell no. Do I feel I can “cope?” Not even slightly. Do I still have as my end game the “plan” that put me in here in the first place as my intention? Without a shadow of a doubt. So back to the selfish, weak, feeble, ridiculousness  & all the other things I loath about myself it is then…

Meanwhile tonight I will cuddle G/man’s teddy that he gave me for support that bit harder & hope the combo of anti anxiety/depression & sleep meds I took will kick in asap….