A work in…. progress??

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 …. 

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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)…

The Big Dipper….

“Life is a roller-coaster & you just have to ride it” so the song goes (ear-worm all day now).

When you look at the picture below, what do you see? (No need for rude comments thank you very much!!)

I’m guessing you see one person with more miles on the clock than a company rep car does in a year & 2 smaller (may I also add adorable, no bias at all….well when I say adorable, I should quantify with the word mainly first and also add / mini hell-beasties” as an alternative option) peeps.

Yes we are pulling faces, in fun (no one boffed as far as I know!) playing up to the camera & posing like the loons we are. Clearly having a good time.

So as one lady I met recently told me, pictures show everything, they tell the story, hide nothing & prove everything. And she has a point; we’ve all heard the adage “the camera never lies,”  Except it does.

The social media stage we are all a part of often shows only the good: that friend with the enviable life style, amazing figure, adoring husband, cutest of angelic kids, oodles of money, au pair, designer clothes & all the purported trappings of luxury, do we know what goes on behind the seemingly idyllic snap shots of #soblessed# or #livingthelife# Maybe she’s lonely, crying into her glass of Sauvignon Blanc that’s gone from the occasional one a night, to more & more of the bottle. Maybe her husband’s never home & she’s moody & passive/aggressive. He could be working all the hours to pay for the luxury life style or in a cliched twist he’s having it away with a fellow employee or maybe they just don’t actually like each other much anymore, who knows?

That other friend constantly posing (smug) pics of the organic, free range, fair trade ribbon courgette pasta spirals that she just knocked up in 2 mins because little Bella and Fergus just love mummy’s home cooked delights & wouldn’t know a chicken nugget (or heaven forbid a McD’s happy meal!!) if it bashed them on the head sideways! Yeah perhaps she knicked that instagram pic from Deliciously Ella/Annabel Karmel et al…. or (shush) simply stabbed an M&S ready meal (other supermarkets available) shoved it in the microwave & then lovingly ladled it on to plates, sprinkled a soupecon of seasoning over the top….. meanwhile little Bella & Fergus screamed from the corner & dumped the entire plate across the farrow & ball paint work & travatine floors….

I guess what I’m ramblingly trying to say is, a photo tells one part, the story we are happy to share but not the warts & alls hiding just below the surface.

I spent about 4 hours at home yesterday with hubby, parents & all 4 kids. This was a big step for me and don’t get me wrong in the main, I loved it. But it didn’t stop the paralysing fear when the kids were squabbling over who got to play with me first & for how long. It didn’t stop the shaking, nausea and trembling when Minx had a fit of the hee-bee-jeebies because I played with G-man first and therefore she equates that meant I loved him most. It nearly broke me; sent me rushing back to the dubious safety of my ward. Give up, give in, run away and bury your head.

These are the demons that want to control and dominate my world at the moment.

I’m incapable of making even the most minimal of decisions or choices at the moment: chicken or fish for dinner? Bath or shower? I can’t explain why it’s so hard to make such simple, roll off the tongue answers, I just can’t do it anymore. Maybe my life of late has been so full of choices, decisions, and & weighing options, my brain has gone into some protective shut down mode. Someone far clever-er than me & probably with a Doctorate in front of their name has some fancy word to describe it. All I have is me, myself and I.

And this evil, dastardly anxiety & depression is so sneaky, so cunning and sly; it has robbed me off my self confidence, esteem, self assurance. But I will not let this be a sob story, I will not let it define me or who I am. It may be where/what I am right now but life is a constant state of flux & I’ll ride with the rough & the smooth…. the highs at the top of the roller coaster where you wave your hands in the air like you just don’t care (& scream the adrenaline out) & the plunge at the bottom that whooshes the air out your tummy & leaves you praying half that it’s all over & in equal measure that you get to climb to the peak and sore again….

Returning to the ward is a double pronged approach with the sharpest of forked tongues….it brings a level of safety & the promise of prn meds plus the ever open doors from the nurses & doctors. But the undercurrent of aggression, palpable fear & barely simmering feelings of violence from some very mentally unwell patients is always there.

Every loud bang/shout/slam of a door, every alarm that sounds, has me trembling on edge, not knowing whether to stay put or flee to my ward (which is shared with a grumpy lady who told me off for doing my teeth too loudly at 6:30pm the other night & for putting my clothes away slamming cupboard doors 🤔 I’m torn between being empathic, sympathetic, understanding that she’s facing her own demons & difficulties that I know nothing about her own situation to going all Kevin & Perry Harry Enfield style & sulking & flicking the v’s up at her behind my hospital curtain. (Demonstrating my maturity on so many levels 🙄)

So to summarise, although I loved being at home with the mini’s, the ‘rents, the dog & definitely not forgetting the hubby who should be commended for holding it all together (& then some) offering me a safe haven, letting me blub ridicously all over him, even if I leave Alice Cooper style eyeliner streaks on his shirt shoulders. (He definitely needs nominating for some kind of award!) despite all the happy pics (which I cherish inordinately) yesterday was a hard day…

Back on the ward, I was snotty, and sniffly, and having a little pitty party for one in my pj’s with extra prn & a good old chin wag with the the lovely staff who didn’t offer platitudes but did provide cups of tea, extra meds & reassurance by the truck load

Guess it’s time to get back on the rollercoaster & shout “wheeeeeeee” ear splittingly loudly….

A demain…. 😘

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…. 

Lisa in the sky with diamonds…..

A play on words shamelessly stolen from the frankly legendary Beatles song “Lucy in the sky with diamonds” (tuuuunnnnee!) & as rumour would have it famously refers to LSD, a popular hallucinogenic drug back in the day (illegal FYI) & for all I know, possibly prevalent in the same/similar format today.

I’m still on the goooooddd legal drugs several times a day whilst my doses are being adjusted to appropriate levels and I’m still in the hospital (or spa package extraordinaire as one fiend/friend would have it) & have been overwhelmed and humbled by the lovely & vast load of cards, flowers, texts etc that you fab lot have thrust upon me. And herein I hate to confess lies part of the problem: I feel undeserving of your generosity, selfish in the extreme & basically pretty weak and pathetic – I guess that’s what severe depression, exhaustion & anxiety leaves you with.

It’s not even a question of not being good enough. It’s the feeling of being good for nothing, entirely worthless & lacking. I hate this feeble person I have become. Please believe me when I tell you this post is not about me fishing for compliments or hoping you will reply with praise in abundance – I am not self sacrificing/promoting; just trying to give a little insight into how debilitating and all consuming mental health issues can be & how they take over your life.

I’m allowed out of the hospital for brief periods on accompanied leave – either with a staff member if there is someone spare or released to Martin or a friend’s care as my “responsible adult” (ha!!!)

Although I have enjoyed popping into Harrogate for an hour or so just for a change of scenery (and to potentially find an acceptable substitute for the Dune shoes I’m still lusting after… total mission fail 🙄)  it’s a real sucker punch when the anxiety comes roaring in & all you want to do is be invisible, unnoticeable & back in the sanctity of the hospital. The return cannot come quick enough & often I need PRN (from the Latin pro re nata meaning as the circumstances arise) medication to bring me back to some semblance of serenity & normality (whatever that is) just to function.  I’ve also (unknowingly & unintentionally) begun ripping the skin on my arms to shreds; not as a form of self harm but apparently a well documented side effect of severe anxiety. It’s not pretty & I don’t want my children to see it & worry but can’t seem to stop myself unless whomever I’m with points out what I’m doing.

People’s (on the outside world)  well meaning comments can be hard to handle to: “you look so much better” “you seem so lively” or “it’s been 3 weeks so you MUST be feeling back on the road to good health now!”

Truly I understand these are all said with the best intentions and meanings (none of us really want to be told we look like crap particularly no matter what the circumstances) but myself and fellow inmates are learning to take things hour by hour or even minute by minute during the really terrifying, utterly disabling anxiety moments. Being told we look so much better or similar puts us under huge pressure to be that person for you, to live up to your expectations. Of course we are all terribly British with our stiff upper lips & brightly repeated “I’m fine!” even if we have a limb partially hanging off so to admit that your mental health, self worth, esteem etc is in your boots goes against every fibre of our being and it’s not even as if you can especially see something is actually wrong with us so we feel even more fraudulent. I realise I may be generalising too much here but certainly this is representative of the majority of my fellow (spa) residents from chatting it over.

The last few days have been particularly hard as I have had by necessity of deadlines & time frames had to put a formal letter of complaint together against both the education department, children’s social care & the emergency duty team to follow up the complaints I put in by email.

This has dragged up a huge amount of unpleasant emotions, memories, the feelings of overwhelming fear and desperation and exacerbated my exhaustion but needs must and as I may have mentioned once or twice when it comes to my children, I am lion-hearted. I also hope to set precedent so that no other families will have to experience what we have been through over the past 18 months or so.

So am I getting better? Honestly I don’t know. There are certainly some chinks of light at the end of the very long, dark tunnel. But the thought of what happens when I eventually have to face the various professionals when I leave here,  the meetings I will have attend, my lapse in mental health being held up  in judgement as to my failure to parent, not to mention the tribunal, caring for the kids & running the household again absolutely terrifies me. Paralysing, crippling self doubt abounds & in discussing my risk assessment & care plan with the staff recently, my level of risk (to self not others) remains the same.

In the meantime if it’s not time for the gooood drugs or I can’t have any more PRN, I have found a fairly helpful interim substitute:


Thanking you all 😍