The Trigger…..(Pull it)

Recently for reasons that as yet I cannot divulge (I promise there is a blog post coming on this as soon as I am able; apologies for the cloak and dagger tactics. I’m not one of those “u ok hun?” PM/In box me” type people honestly!!) I have recently had to write an explanation of what led me to my break down almost 2 years ago. The account needed to be factual and pragmatic; the irony of trying to keep my feelings out of it when dealing with something so fundamentally, emotionally driven as a suicide attempt was not lost on me.

Although I will (if asked) talk to close friends and family about what led to my attempts and breakdown in mental health honestly and forthrightly, it doesn’t mean there isn’t shame; that there isn’t guilt and that there aren’t things that I (still) hide. There are somethings that are so deeply personal (buried?) that I don’t think I’ve even allowed myself to explore them.

In writing down the what’s, why’s and wherefore’s, its dug up a lot of suppressed memories, pain and feelings of helplessness, at a situation that was not of my own making. That’s not to say that I want to palm what happened off on someone/something else. I accept responsibility for want of a better word for the actions I undertook. However I reached that point where checking out seemed the only option to change what was going on around me.

It occurred to me as I typed the details up that it was triggering a lot of emotions even though I wanted to be concise and almost 3rd person in my approach. And I as thought about that word “trigger,” I realised that summed up my entire experience of a mental health breakdown. Seems obvious I suppose. I don’t know – I can only speak from my personal situation.

Suicidality  springs from a myriad of wide and varied causes;  I am no expert. For some it may be a single one-off event that causes the person to experience a sudden mental health breakdown (personal/financial/status loss spring to mind) for others something that happened in their past (abuse, specific traumatic one off/repetitive  event) which cannot be overcome.

For me, it came about insidiously, through a relentlessly relentless piling on of pressures and this too is of course acknowledged as a common cause. I guess for me the idiom “at the end of my rope” has more connotations than just being at the end of one’s patience. Apparently the original source of this expression relates to tethering an animal to prevent it moving and wondering off beyond a certain distance.  Personally, (in a somewhat grimly, ironic humour) I thought it meant at the end of the hanging noose knot….

My first suicidal ideation was triggered by the repeated use of the word COPE. An innocuous little word that is used to describe so many situations. As a parent carer of children with special needs, it’s not uncommon for others to utter “I don’t know how you cope!” This is something that I know many of my fellow parent carers  or carers in general will be nodding along with.

Carers are often seen as saintly like figure. A cross between Florence Nightingale and Mary Poppins perhaps? Truth is, very few of us chose this life. The role chose us by circumstance or default.  I know there are some utterly inspiring carers out there who did actually choose to foster or adopt children with special needs (and thank goodness for them) to prevent little lives being institutionalised without families of their own.

There are also those courageous individuals who when embarking on their journey of parenthood were given horrifying, frightening, diagnosis for their unborn child and yet chose to bring life into the world knowing they were doing so against the odds; that they  would do their utmost to love and cherish their child, no matter what. Other parents have had to face a child being diagnosed with cancer, degenerative or congenital conditions out of the blue or as a result of an accident or injury.

Of course later in life more and more of us are facing the hideous reality of dementia in family members. Those with grandparents and harder still, their own parents or siblings who they see deteriorating in their day-to-day abilities; losing their independence and all too often a decline in mood, personality and recognition of their own nearest and dearest. Very cruel.

Whichever way it comes to be, caring for someone isn’t something you get a medal for. There isn’t a huge amount of reward  – certainly not monetarily. If you can show that you provide care for someone receiving  specific incapacity benefits for over 35 hours per week and you earn under £123p/w (as of April 2019) from other sources of income, you can enjoy the princely sum of £66.15p/w (also April 2019) for the ‘privilege’ of being a carer. Even based on 35 hours per week(and the majority of carers I know ‘work’ substantially longer hours than that; 24/7 for many)  that equates to just £1.89 per hour. Wow. Best not get me started on that. A ranty blog post for another day no doubt.

Anyway I digress. The point I’m taking a long time to get to is many carers ‘cope’ because there really isn’t any other alternative. And those of you who say you couldn’t? Well you would. If you had to. At least for a period of time.

There are (too) many days I feel like sitting in a corner and rocking. Many days I wonder how I’m going to make it through the endless medications, physiotherapy, appointments, hospital visits and dealing with the practicalities and physicalities of caring for children with extra needs. Don’t get me started on the relentless laundry pile that never seems to go down, the food shopping and meal preparation that are just part and parcel of every day life in a busy family and I know I’m far from alone.

But the point is I do – cope – I mean, generally speaking. It isn’t a life I chose but equally my children didn’t ask to come into the world with neurological,  medical and/or physical difficulties either. So I get up, I keep going, usually with a grin (maybe a grimace) and somehow it all vaguely fits together, we get to the end of each day with perhaps only a modicum of sanity and no clean school shirts for the next day (Febreeze anyone?!) because it’s the only way we carers know how too.

There isn’t any one else out there to pick up the slack. Unless you are in the fortunate (and probably) unlikely position to be independently wealthy, the majority of carers get on with their role because they have to keep on keeping on. No one else is going to be there to pick up the pieces (or socks) if they don’t. No white knight (or even vaguely grimy one) will rush in where others fear to tred.

So back to that pesky trigger of mine. What’s more frightening than ever is it’s not just carers that struggle to COPE. Unless you have been hiding under a rock, you can’t have failed to notice the inadequacies in the health and social care system caused by austerity, lack of (meaningful) investment, candidates and poor morale. The system itself has reached breaking point.

The working conditions are sending droves of medical professionals overseas where they will have a better work-life balance and better remuneration. Fewer than ever medical students want to take on the role of General Practice and more GP’s than ever are planning to retire early. Figures released in July 2018 showed 1 in every 6 GP positions were unfilled leaving almost every surgery across England at least one Doctor short.

Mental health services have also suffered hugely and in real terms, whilst there were expansive (and expensive!) promises given that funding would increase broadly in this area (£2 billion was pledged by Phillip Hammond in October 2018) in reality the fall in in-patient beds has led to those in crisis being sent hundreds of miles from home, away from their nearest and dearest which can, at least in my experience, only create more hardship. The inability to access timely, regional in-patient care is not just inadequate but dangerous. The focus on out-patient/community based care is of course welcome but it is not a replacement for those battling psychosis, severe depression, eating disorders and such like, especially when either the beds aren’t in familiar environments or worse still, available at all.

Locally Harrogate Hospital plan to close the adult mental health in-patient unit at some as yet unspecified date in the future (rumoured to be later this year) and I for one will mourn this loss. Whilst I hope never to need in-patient services again, I made and have retained a very special  friendship with a fellow MH warrior. We often share some  deeply inappropriate, darkly humourous moments that unless you have experienced a mental health crisis, just wouldn’t be appreciated by  nearest and dearest.

I am forever changed by my own break down experience both in good and bad ways. I have learned my tolerances are much lower than before so whilst I’m in an *ok* place much of the time, it doesn’t take much to alter that kilter and send me spiralling to darker places. But I have also learned I am stronger than I thought it was ever possible to be, that I can ‘cope’ with most of what life throws at me and that will do… for now

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The sky’s the limit…

I make no apologies but I am going to be *that mother* – you know the one that clogs up FB (& therefore anyone else who reads her posts, unless you have set me to silent or similar!) with proud, perfect first born posts & rambles to anyone who will listen how talented/amazing/Einstein’s veritable protege etc her child(ren) is/are.

Bare with me on this one though ‘cos I really do think I deserve (well not really me as such but I’ll get on to that bit in a minute!) to have at least 5 minutes of proud glory hunting on H’s behalf.

There are so many reasons I can wax lyrical about H’s virtues: the love and support he gives to all his siblings, (and us of course) the practical care he has voluntarily been trained in to provide for Minx so he can give medications via her gastrostomy, set up her pump feeds (and now G’s too) and aid and assist with various other aspects of personal care; his verve for life, his 100% commitment to anything he puts his mind too, his enthusiasm to embrace every day no matter what it throws at him, volunteering for the local Young Carers; you get the picture: I could go on ad nauseum.

However, the last 2 weeks give me even more reason than normal to shout from the rooftops: H started his private pilots flight training on Monday 23rd July 2018.

On Thursday 26th July 2018 he did his very first air-flight – SOLO!!! Given that he’s only ever had a trial lesson aged 13 prior to this, I think that’s pretty bloody impressive!!! So shout it from the roof tops I will 😊

Just call me Maverick! No first day nerves – Well H didn’t but I did!

From a very early age, H demonstrated a love for all things plane related.

Not necessarily surprising given his Dad’s job (airline pilot for those who may not know) and watching him hero-worship his Daddy flying his little die-cast planes through the sky at death-defying angles, accompanied by lots of engine nnnnnneeeeewwwwaaaahhh type noises (apologies for very poor sound description!) was very sweet.

By aged 3 he could identify most aircraft in the sky or at an airport with spectacular accuracy and had a vast collection of little plastic aircraft models on display stands from various different fleets. Very fragile, a nightmare to dust around and definitely not compatible with younger siblings clumsy hands!

He could fly the simulator on our home computer and his idea of a top day out was sitting in Jersey Aero Club watching planes coming in and out of the Island for hours at a time.

Stealing Daddy’s safety tabard for doing aircraft walk round!
Captain Beaton & First Officer La-La at the helm

Since the age of 4, he’s talked about being a pilot. Initially we responded with a laugh; how many of us said things when we were pint-sized about future occupations and how many of us actually do those particular jobs? As far as I can tell the world isn’t overrun with spacemen, nurses, ice-cream taste testers et al (Incidentally Mr DNTW’s wanted to be a dustbin lorry driver or the night porter on a sleeper train!) Over the years however, H’s convictions only grew stronger and 3 or 4 years ago, recognising that he was serious, we began scrabbling down the back of the sofa for the purported thousands that Brits are supposed to have scattered in loose change (I suspect this is collectively as I only found about 2p, a chewed piece of gum no doubt stashed by one of the offspring for safe-keeping 🤮 and a partially eaten nerf bullet)

The sofa search having proved fruitless, I went to investigate the mystical money tree that lives at the bottom of the garden. Alas, there’s a straggly looking bush and a peeling- paint-bit of fence but nowt else.

We started looking at flight schools more closely and after I had scraped my jaw off the floor cognisant of the fact that it’s very unlikely we have a spare £100,000 + just waiting to be spent, H and hubby had more serious discussions and investigations as to how H could realise his end goal of becoming an airline pilot.

The plan is for H to train just like his Dad did: get a job in the real world to pay for exams, flight training, hour building etc over the next 2-3 years. It’s not the easiest route but it’s a considerable saving on dedicated flight schools and his sense of achievement ultimately will be enormous.

H has also been extremely fortunate that due to the generosity of grandparents he’s able to do a ‘crash course’ (definitely not a good choice of words but can’t think of a better one!) and do his private licence over a month this summer. He’s taken 8 of the 9 ground school exams, passing a number with 100%.

Given that between revising for a-level exams he read through the 9 tomes of aviation law, navigation, radios, meteorology etc for ‘fun’ and relaxation, he’s already showing dedication and determination beyond his tender years. (NB, have made a note to talk to him about his understanding of the word fun!)

Already in the face of adversity, H has had to overcome some hard times. Last September when undergoing his very important application for a Class 1 Aviation medical, he very unexpectedly hit a huge brick wall: despite being merely 17, seemingly fit as the proverbial butcher’s dog – he cycles regularly, goes walking for fun(!) and hikes in the Dales, tests showed an issue with his heart.

Initially he believed it was an error on the machines part (youthful exuberance) but further investigations revealed a progressive heart condition. He was devastated as were we.

No amount of consoling that at least this had been detected early could reassure him. For H, it potentially meant the end of his dreams in pursuing a career in aviation

As a mother, all I could think was how, why and what happens now?? Your heart is a *fairly* important bit of kit….

The cardiologist we consulted was excellent and there followed a round of extensive medical testing to find out how serious things were (are). Sleepless nights for me at least whilst we waited for results.

The good news is that whilst the condition is progressive in nature, he should have years ahead of him, symptom free.

He will be regularly monitored and scanned and eventually medication will control the symptoms. Based on present medical knowledge he will at some point need surgical intervention but we are talking far in the future and with medical knowledge, procedures and equipment evolving at lightning speeds, who can say what the future will bring.

Nonetheless, H was rejected for a Class 1 medical and caveats issued alongside this meant he couldn’t even pursue a private pilots licence. H has always been a positive person but this knocked the stuffing out of him.

After taking time to let the news sink in, we decided not to take this as a fait acclompi. H and Mr DNTW’s consorted with aviation medical and legal experts.

I’ll spare you the ins & outs but it became apparent that if this hadn’t been H’s initial medical licence application, he could have been issued a licence with restrictions (no flying with anyone over 65 or a fellow pilot with medical restrictions) so effectively, the refusal to issue his licence was penalising him for something that hadn’t happened and was/is unlikely to be an issue for many years to come!

As ‘luck’ would have it, another would be pilot had been declined his medical for a different condition for issues that are unlikely to be problematic potentially ever. He was in the process of pursuing his case at the court of human rights.

The Civil Aviation authority agreed to concede before it got to that level and thus opened the floodgates for others in similar situations. H was advised to appeal the decision and after a nail-biting few months he was issued a licence with restrictions.

He is under no illusions that this does complicate matters a little but if air travel and the airline industry continues to expand as predicted, there will be a shortage of airline pilots in the years ahead. (Brexit of course is an unknown, unquantifiable potential source of concern – & not just to the Government! 😏)

So H has made the decision to pursue a flying career and if all goes as it should will have achieved his private pilots licence in the next 2 weeks!! Eek.

As I type, H is preparing for his last exam, another day of navigational flight planning and cross country flying. He’s earned his first set of ‘stripes’ – epaulettes – and is proving that he’s a force to be reckoned with!

First ‘stripes’ … a while to go yet before the airline version First Officer, then Captain someday?

I have no doubts that H will achieve his goals professionally and personally in the years to come because of his hard work, determination & drive to always do his best. Now if only that could also be applied to ironing his uniform…..❣️

Comfort food or food to comfort?

Today has been a bit 💩 I’m not going to lie……
We had to be Chez Hotel NHS Harrogate bright and early this morning for a date with radiology following G-Man’s “discussion” with a fire extinguisher on the last day of term. For the avoidance of doubt the fire extinguisher won & once again G and the NJ parted company. 😫
Given that it happened late on a Friday and from past experience of the difficulties this causes, I didn’t bother to contact anyone medical until yesterday. But I got sneaky this time and bypassed the ward, going direct to G’s pediatrician.
Recent visits to replace the NJ tube have been traumatic and getting more so each time. G has borne this bravely but enough is enough. The last experience left us all traumatised.
I don’t use that word lightly but given the radiologist said we were going to have to abandon the placement due to the levels of distress and G effectively withdrawing consent, I knew we needed an alternative approach.
I have asked in the past about some kind of amnesic inducing drug or light sedation and been berated for wanting to “drug” my child. However, the medical bods eschewing this approach only see a snap shot of my child for about an hour and usually aren’t in the room when the procedure is being carried out.
Nor do they deal with the longer term fall out, the increasing hysterical approach to anything medical, the begging, pleading and promises he will be good, eat more, try harder; listening to this I defy anyone without a heart of stone not to be affected and I feel huge guilt. How do I reinforce this isn’t his fault?!
At CAMHS appointments I listen as my child pours out his feelings of helplessness in the face of such procedures, his loss of rights over his own body and the feelings that he is not being listened to or even heard. And I question if it is right that he is put through this but we are left with little choice until a long-term solution is found.
The radiology department are giving me increasing (well-intentioned) grief about the risks of his repeated exposures to radiation. I am told that each time they have to replace the tube in this manner it is the equivalent of undergoing a CAT scan in radiological terms. I have lost count of how many times the tube has had to be passed since it first went in in May and with no end game in sight, I am mindful we are potentially creating a different set of problems.
So I threw myself on the mercy of our wonderful pediatrician, pleaded our case and to my immense relief, he immediately agreed and to save me having to battle and negotiate, liaised with the ward directly so that all we had to do was show up in the right place at the right time.
There was the occasional raised eye-brow from a clinician TRIPLE CHECKING I definitely wanted to ‘DRUG’ my child but I think the steely stare and unwavering gaze assured her I wasn’t going to be persuaded otherwise and from there on out, G was treated with the utmost care and consideration and after the usual shenanigans of weighing, measuring, a gazillion questions, signing of consent forms, he was popped on a monitor, given the maximum dose of meds and was soon off his face, happily rambling utter nonsense.
Truth told it was quite entertaining listening to his diatribe; apparently he was flying himself down the corridor, nothing to do with the trolley, porter, myself or the F1 accompanying! If it hadn’t been for his reaction to the taste of the medication, (lots of spitting and cries of DISGUSTING) I might have tried a cheeky request for some myself.
I’ll spare you the ins and outs but it was so much easier and kinder to have the tube passed this time round.
There is only one specific radiologist who can carry out the procedure and we are on first name terms now due to G’s frequent flier status! I know the names of his children, that he was born and grew up in Jersey just like me and that he’s off on holiday shortly so it was particularly hilarious listening to G shouting “Dude, stop that, why’s he shoving things up my nose Mum?! Dude seriously stop doing that, don’t look at me. NONE of you, face the wall! Why are you laughing?!”
The best way I can describe the procedure is like watching someone rod the drains. My apologies to all medical people and specifically the radiologist concerned who no doubt trained and worked exceptionally hard for many years. To compare his skill and expertise to dyno-rod seems rather unfair and very dismissive!! But there is a lot of see-sawing of flexible tubes and guide wires, pushing, prodding, twisting and turning till eventually the sucker ends up in the right place!
One hour later procedure complete, G still high as a kite, we were able to go back to the ward and let him sleep it off! He rambled and raved like a caricature of a Hollywood movie ‘drunk tank’ extra but he was funny and (mainly) charming and most importantly didn’t remember a thing when he eventually came round and found his tube safely back in situ. I count that as a definite win!
Of course it would have been nice to be able to contact loved ones and let them know all was well but my phone and internet seemed to be playing up. I had received a mysterious text telling me I needed to make a payment to our phone provider and reacted with dismissal knowing that Mr DNTW’s has every thing set up on a brilliant contract where we get oodles of data, texts, unlimited calls etc. I assumed it was just my phone (or me!) playing silly beggars.
But when eldest son contacted me on messenger saying he couldn’t call or text and could only use the internet when on wi-fi, I knew there was more to it. Still I assumed the network was probably down.
Several hours later, when his nibs was back in Blighty, he messaged me to ask if there was a problem with my phone and that’s when began to wonder if there might be a little more to it….
Child number 2, J, has been home for the last week. He’s our fabulously witty, dead-pan humoured, technology wiz with a knack for circumventing every manner of parental security and or block we have ever put in place. He has what was called aspergers but now changed to high functioning autism (don’t get me started). I tentatively mentioned the issues we were having and his face changed….
£448 worth of bill later, we know what the problem was/is!!! Suffice to say J was mortified and Mr DNTW’s after a few ‘effs and jeffs” spoke to our mobile provider, explained what had happened and we are extremely grateful to their management team who were so understanding and agreed to refund the excess charges. Big up EE!
So despite having left the house by 8am, not getting back till 3:45pm and feeling pretty drained all round, I felt the need for comfort food. Despite the fact that current air temp even “oop north” is on a par with the surface of the sun, I decided we needed a family roast with all the trimmings. A large portion of roast potatoes, chicken, lashings of gravy, Yorkshire puddings and veggies later my sense of equanimity is restored!
It is only with a slight sense of irony that I reflect we have 2 tube fed children and one with food-sensory issues but nonetheless by small miracles, everyone ate at least something of what was put in front of them; apart from yours truly: I ATE all of it and then some…possibly double helpings……sssh! Don’t tell….. x
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Relentlessly Relentless….

blog picture June 2018 final draft 3

Who cares for the carers?

There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore.

As a rule, I am not a woe is me kind of a gal but there are limits and even for the Queen of “the glass is half empty, therefore there’s always more room for wine” claimant, sometimes I just don’t want to play anymore.

So why today? It’s been a busy week – nothing new there. Multiple appointments – again lather, rinse, repeat. Certain “dark forces” (bear with me, having to be slightly obtuse so it’s not too outing; a story for another day!) have done their level best to floor us as family and put up barriers; as my Dad would say: “same sh*t different day.”  Nothing especially jumps out as being out of our ‘norm.’

Actually, the straw that broke the camels back today is really rather ridiculous –  especially since I’m a grown (loosely termed since I barely scrape 5ft 3″) woman.

I don’t know about you but for me, it’s often the little things that tip me over the edge and today was no exception: there were NO apricot danishes left in a certain food establishment that prides itself on offering not just any old danish…. and boy did I have my heart set on that danish.*

You could in fact say I had built that particular danish up to be the highlight of my week (I know I know, I need to get out more!) and I was relishing scarfing it down with my mid-morning latte whilst staring daggers at my ever-increasing piles of paperwork that needs to be set light to dealt with and some of it rather urgently (anyone thinking I might be procrastinating by writing a blog post instead of dealing with said paperwork, that’s an affirmative!) particularly if I intend to throw my own kind of shade back at the dark forces. They might be putting up barriers but I’m packing TNT, a demolition ball and an AK47 to pulverize them. Ok perhaps I should STEP AWAY from the caffeine….my over active imagination, key-board-warrior-esque approach and twitchy eye suggest that caffeine, my drug of choice, has been consumed in too vast a quantity.

Whether it was the *slightly* murderous deranged look in my eyes or the muttering  sotto voce of curses questioning the parentage of all food halls connected with this particular establishment that caught the attention of the lovely man on the bakery counter, I can’t be sure but clearly sensing something was amiss from the plethora of delicacies in front of me, he tentatively asked if everything was all right.

Resisting the urge to scream out in the style of Ross from Friends a la “My Sandwich” sketch (you young things aren’t likely to be familiar with that gem so let me share it here https://www.youtube.com/watch?v=6tqmXTYa3Xw) and without resorting to tears either (the struggle was real people!) I managed to convey my deep disappointment that there were no danishes of the apricot variety to be seen.

And then, as if by divine intervention (ok, I’m waxing faaaaaaarr too literally, all that caffeine has really done for me today!) the dear, dear bakery man, (alas I did not find out your name in the ensuing rush of emotions that came over me!) uttered those most blessed of words: “not to worry, I’m just about to put some out!”  Yes! Fist bump, air horns and angels singing the hallelujah chorus; the gods and goddesses and the high priestess of bakeries had smiled righteously upon me.

I must confess it felt like there was something in my eye. I’m thinking that as my salivary glands went into over-drive, some sort of neurological spill over occurred to cause watering?

But the thing is, I’m a firm believer in taking your pleasures where you find them (erm just to caveat, legal ones, I’m definitely not advocating lawlessness or reckless criminality!) because being a parent is at times bloody hard work.

Being a parent carer is even bloody harder, thankless work and as far as I can find, there’s no resignation clause and as for the pay? Well if you are “lucky” enough to qualify (there are certain criteria and the person you are caring for has to have significant needs taking up significant amounts of time) for carer’s allowance, do the maths –  you don’t even get minimum wage for the hours you put in. Oh and no matter how many people you provide care for, you only get a single carer’s allowance.

When you multiply caring for 3 children and an 18-year-old who all have varying medical/social-emotional needs and complexities, there really aren’t enough hours in the day. I go to bed every night with a to-do-list that grows ever longer. For every 2 things I manage to tick off during the course of the day, I seem to have added at least another 5.

It plays on my mind that I have dropped the ball somewhere; have I requested everyone’s medications from the GP and arranged for them to be sent to the pharmacy? Do we have enough feed/containers/giving sets/dressings/lotions and potions in hand to get to the end of the month? Have I transposed all of the appointments that crop up into my phone calendar so I can plan everything round them in the weeks ahead? And woe betide if any of those appointments were only given to me over the phone and I don’t have an actual letter to cross reference and double-check with –  will I get the right child to the right hospital/clinic/specialist on the right day and time?!

I’m not ashamed to say I take a concoction of various medications every day to help me manage one way or another; be that for my severe depression, anxiety and inability to sleep or for the acid reflux that plagues me and the dodgy back/neck/shoulders and most   recently, excruciatingly painful sciatica (so many carers suffer with joint/muscle pain and problems as result of the physical demands of caring for a loved one with mobility difficulties) I’m acutely aware that these are a crutch for want of a better word. In an ideal world, it would be far better to tackle the sources of the problems permanently. Even better in some far off utopia, it would be to put provisions in place to be proactive instead of reactive. To prevent the aches and pains and feelings of isolation, despair and all the affiliated emotions and physicality’s that go along with being a carer.

I learned to my cost (and that of my families, not to mention the NHS etc) that if we carers don’t put protective measures in to fortify ourselves it all comes crashing down.

I am not unique. As a member of support groups such as SWAN UK –  http://www.undiagnosed.org.uk I read far too many comments from parent-carers who face battles similar or even harder than my own.

On other forums I’m a part of in relation to education, health and social care there is a generalised resignation to the fact that accessing support, working WITH organisations or professionals instead of the THEM and US facade is a constantly uphill battle; at best a ‘sorry there’s no money in the system’ approach to outright horrific accounts of utterly despicable, underhand tactics designed to deprive the most vulnerable members of society from the most basic, fundamental human rights and discrediting, even slandering or making false allegations against those who have to pick up the mantle and strive on their loved ones behalf. Probably best I don’t get started. I can feel the vitriol rising and that won’t help the acid reflux!!

Next week from 11th June to 18th June inclusive is Carers Week in the UK.  You can learn more here:  https://www.carersweek.org  It is estimated that in the UK there are 6.5 million carers and that figure is only certain to rise as we face an ageing population who are living longer, an NHS that is under resourced, over stretched and a welfare system that has been not so much stripped back as hacked to death and lord only knows what, if anything will be around in future times to help and support those most in need.

But for now anyway, I have taken care of myself by refuelling with a double shot, fully caffeinated (you don’t say?!) latte and a belly full of apricot danishso I’m bouncing off the walls all fired up to tackle the paperwork and smite those dark forces with a mother’s wrath.

*If anyone suddenly feels the need to shower me in delicious pastries of the apricot kind, you know, I’ll happily take one for the team 😉 Or tell me your own personal sanity savers and maybe I’ll see what else I can try!

A picture paints a 1000 words?

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When you look a this picture, what do you see?

A smiling girl (admittedly that’s probably stretching the use of the word ‘girl’) and her dog? A woman who looks tired, definitely in need of a bit of slap (literally and figuratively?!) and probably some air brushing?

This picture is so bittersweet in so many ways that I *almost* can’t bear to even share it.  My beautiful dog Buddy is in it and he’s no longer with us, departed over the rainbow bridge to be with other furry friends. It makes my heart ache all over again but he still brings warm thoughts and a semi smile to my face nonetheless. The power of canine love.

But what this picture represents is so much more than the image at face value.

Just over one year ago this picture was taken in the reception area of a psychiatric hospital. I was suicidal and had been admitted two days previously having reached crisis point and having made the decision to end my life.

Even trying to write that phrase feels unreal and melodramatic.  Like a bad soap opera or overly prosaic novel.   This stuff doesn’t happen in the ‘real’ world. Except it does.

I don’t know if it was a surprise when I eventually confided in some of my closest friends about what I had done and what at times, it feels like I still intend to do. In some ways reaching that point was a huge shock, even for me.

If there is such a thing as a poster girl for depression, I’m not certain mine would have been the picture used (hopefully not this one anyway…it’s not my best side!) I was and still am (usually) a glass half full type person – I’ve said it before and I’ll say it again – a glass half full means there’s still plenty of room for more wine!

See, I crack jokes, talk a lot, especially when nervous, I smile, put make up on, clean clothes, prepare meals, answer phone calls etc etc so how can I be depressed? And therein I think lies the crux of it: what does a depressed person look like? What image does someone who has reached the end of their coping skills project?

I wouldn’t dream of speaking for others who have gone through and continue to battle their own demons. But in my experience, depression is such an insidious thing. So even if you seem to be the life and soul of the party, the one that is strong and capable, dependable and reliable, it doesn’t mean you can’t experience the gnawing, dragging, emptiness. The feeling that it’s all too much, no way out, nowhere else to run to.

Too much effort, too much expectation, everything from getting up, dressed, one foot in front of the other a herculean effort. But it doesn’t mean you don’t keep DOING all those things. Sometimes the doing of all those very things is one of the ways you keep some kind of a handle on it, albeit a wonky one.

So it doesn’t in any way seem surprising to me when I read accounts of how someone has gone about their day-to-day life, seemingly taking it on the chin, even appearing to have a great time attending events, get togethers, nights out….and then they end it all.

The shock and grief to their nearest and dearest must be bitter, unpalatable and shrouded in disbelief.  There must be soul-searching. What did they miss? What clues didn’t they pick up on? How could they let their friend/partner/family member down so unreservedly? Why couldn’t they be stopped from choosing this final absolution?

And anger, only natural too. Rage at their selfishness; that they left everyone in this mess, they stopped trying. Took the ‘easy’ way out.

All these things run through my mind regularly, over and over, like a fuzzy old-fashioned film negative.

I feel burdened by the weight of other people’s expectations of me and the damage that would ricochet through our family unit if I achieve my objective. I once had a crisis mental health worker give me the statistics of how many young people go on to take their own lives in the event that a parent ‘chooses’ to commit suicide. Harsh and horrifying and heaping on the guilt. Crafty, effective move that was.

Perhaps because so often my every day life involves meetings with professionals in relation to the needs of our 4 children, it is so important (to me) that my armour is in place. Keeping up appearances, stopping them from defining me as *that* mother, that weak, special snow flake.

The vast majority of professionals we deal with have been nothing but supportive and helpful, even sympathetic but there are always a few, (ironically the ones who in my view have most failed our wider family), who would like to define our ASD child’s difficulties by my ‘shortcomings.’

The fact of course that respite care was proffered but never organised, dangled like a mesmerising carrot for so long, just out of reach; the fact that our child required appropriate specialist schooling and wrap around care, the inevitable self harm, suicidal idealisations, violence against myself and our other children, the regular police involvement, ambulance call outs, CAMHS care and so forth, all accumulated into some persistent, momentous ball of hell unravelling at lightning speed had nothing to do with my break down at all. I’m *just* that sad and pathetic and attention seeking……

Mental health is still, despite the (much-needed) increase in awareness and highlighting by people like the Duke and Duchess of Cambridge, Prince Harry and high-profile celebrities, radio presenters and such like, a taboo, a dirty little secret.

Admitting that you have mental health difficulties, at least to me, feels a bit like shouting out the word VAGINA (or other awkward word of your choosing that doesn’t tend to come up in day-to-day conversation!) on a megaphone, naked on stage to a silently packed out Wembley arena, being globally transmitted by multiple satellites……

I can only speak for myself but having chatted to other friends going through similar concerns, I know they too feel a sense of shame, being perceived as somehow weak and feeble, lessened.

One of the most crucifying  experiences I had in the latter months of last year related to the ill-health of our youngest son. Due to severe gastrointestinal difficulties culminating in losing 5 Kilos in a 4 month period, an extended hospital stay and the insertion of a naso-gastric feeding tube, the lead paediatrician (also our regular consultant for both G-Man and Minx) called a multi-disciplinary meeting to discuss both children’s health concerns (they share many similar aspects) and a plan going forward.

Present at the meeting (in addition to the consultant) were an Occupational Therapist, Physiotherapist, Dietician, Speech and Language Therapist, Community Nurse, Student nurse, Ward Sister, Disability Children’s Team Social Worker, Paediatrician, myself and Mr DNTW’s and a few others I can’t recall. I think the only person who wasn’t there was Uncle Tom Cobley*

The consultant outlined the various medical difficulties, asked professionals for observations and then having brief knowledge of our background family situation asked for us parents to outline relevant events over the year.

It’s trite but during that account, it did feel like time stopped. There seemed to be a palpable and  collective withholding of breath as I relayed the events of significance. I did my best to remain factual, honest, hiding nothing but not (at least I don’t think) boring them to slumber and derailing the topic with a pity party for one.

I couldn’t make eye contact. I didn’t dare look up. My attempt to be detached failed. I cried; big, fat, salty tears of shame. And of course that always brings on the snot. So as I crumpled tissues and wiped and snorted my way through this hideousness, it brought with it crippling anxiety; the awareness that I had laid myself especially vulnerable to the people I need to work with for my children’s sake on a regular basis and I was in their eyes, at least to my thinking, diminished, fallible.

I must take pains to clarify that not for one moment do I think the consultant was doing this to be unkind or humiliate me. His request came from a genuine place: to what impact psychologically were (are) G-Man’s difficulties related to what is going on in his life and how as a collective could we address this for the best patient care.

It’s an ongoing situation. G doesn’t have an eating disorder; his medical ‘foibles’ are complex and require further investigation (even as I type a referral to Minx’s gastro team at GOSH is on its way), interwoven with understandable anxiety around food , the pain it causes and the bigger picture. He’s also under CAMHS.

That there has been a fall out from my ‘situation’ on all the children, there can be no doubt. Even now, if I am unwell physically or seem low the children are hypersensitive to me, like little meerkats on guard.  It will take time for that to subside and what I am beginning to realise, it may never go away entirely.

I’m still recovering if that’s the right word to use. I feel frustrated with myself and angry. There are too many should’s/would’s/could’s (which my mental health team would rap me over the wrists for) – unhelpful words those – and I suppose like the layers of an onion, or perhaps the facets of a diamond, (definitely preferable to root vegetables in my eyes!) are to be evolved and discovered in time.

Therefore, just as the 4 c’s in diamond terms are all important – cut, colour, clarity, carat weight –  we know there is no such thing as a flawless diamond; technically speaking even those given a flawless classification have the tiniest of blemishes or imperfections – (bet you will sleep better knowing that hey 😉)  Having a love of all things sparkly and glittery, I’ll happily compare myself to a flawed diamond (less of the rough diamond please).

Perfectly imperfect. Needing a bit of a spit and polish.

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  • Uncle Tom Cobley origin:
    “Uncle Tom Cobley and all” is a well used British expression to define (in slight derision) a lot of people. It’s akin to the expression “the world and its wife” and  comes from from a Devon folk ballad (Widdicombe Fair in case you are really interested!)  Uncle Tom Cobley (and all) is named as the last of a long (long!) list of men with a chorus ending Bill Brewer, Jan Stewer, Peter Gurney, Peter Davy, Dan’l Whiddon, Harry Hawke, Old Uncle Tom Cobley and all.

Same but different….rare as Unicorn 💩???

Rare disease G&A Photo 2018This year 28th February 2018 is the worldwide celebration of Rare Disease Day. 

The very first ever Rare Disease Day was held in 2008 –  a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate.

Every year since, countries across the world have united to raise awareness of all things rare in terms of disease.

Last year 94 countries highlighted their commitment and support to raising rare awareness which is a pretty fantastic achievement.  In fact that’s an increase in ‘productivity’  of 422.2222% for want of a better way of describing it!!! (I had to ask my eldest son taking A-level maths to work that out so if the stats are not right, don’t blame me!!)  So it isn’t surprising that highlighting all things rare is close to the hearts and minds of those who live with a rare disease or have family members affected by a rare disease.

What does ‘rare’ mean to you? I googled the word rare in the Oxford English Dictionary and the top definition that came up as an adjective was this-  “RARE:  – of an event, situation, or condition not occurring very often. ‘a rare genetic disorder’,”

After that it went on to talk about rare steaks, uncommon birds and such like. Interesting I thought however that the very first sentence used to define ‘rare’ was in the context of genetic disorders!

Actually I think the use of the word ‘rare’ in the context of rare diseases is a bit of a misnomer. Why? Because at any given point 1 in 17 of us will be affected by a rare disease! Surprised? Think about this number in terms of the day to day and see how it relates to your experiences.

If you used public transport today (probably a bad example since much of the country seems to be under snow!) was it crowded? More than 17 of you on board? Probably. Bought a coffee in one of the many high street chains? Hopefully not 17 of you in the queue at any one time but probably more on the premises tucking into a hot drink or waiting anxiously for their turn.

17 is lucky in some countries, unlucky in Italy. 17 is the number of muscles it takes to form a smile, 17 syllables in a haiku poem. 17 is the least random number in a study conducted by MIT asking people to choose a number between 1 and 20. So again, not that rare.

A rare disease/condition in Europe is classified as affecting 1 in 2000; in the US fewer than 1 in 200,000. 80% of rare diseases are genetic in origin whilst others are as a result of infections (bacterial or viral) allergies, environmental factors, degenerative or  known as proliferative eg cancers.

Of those diagnosed with a rare disorder a staggering 75% will be children.  In fact, many of these children are a whole new breed of rare. So rare that their medical/physical and or cognitive difficulties don’t actually have a name!

Presently we know that there are approximately 6000 children born each year in the UK  alone who have an UNDIAGNOSED condition. Of those, only 50% undergoing genetic testing on the NHS will ever get a diagnosis. And this is something very close to my heart because 2 of my children are undiagnosed.

Whilst we can indeed be enormously thankful that medical science is evolving and improving so rapidly –  approximately 5 new rare diseases per week are described in medical literature  – organisations like https://www.raredisease.org.uk provide essential support and a voice for those affected by a rare condition.

For those of us still in unknown murky waters, studies such as  DDD – Deciphering Developmental Disorder  https://www.ddduk.org  or the 100,000 genomes project /https://www.genomicsengland.co.uk/the-100000-genomes-project/  offer families like mine the best chance of getting an answer as to why our children experience various difficulties and potentially the best way to manage their conditions, obtain treatment or assistance and potentially connect with families in a similar situation.

Families such as mine with children who are undiagnosed and/or ultra rare can often feel alone. SWAN UK http://www.undiagnosed.org.uk provide the only dedicated support network for families of undiagnosed children and young adults affected by a genetic condition. Hand on heart I can say that the support I have received by being a member (and now a volunteer parent rep) has been a veritable life-line.

Although my youngest 2 children have a myriad of medical terms/symptoms and diagnoses, to date we have no unifying “umbrella” that explains why they are affected. Their medical notes are vast. Between them they have confounded some of the brightest and most well respected specialists across the country. If I had a £ for every time I had heard the words ‘rare’ ‘atypical’  ‘uncommon’, ‘complex (the list could go on for a while, you get my gist) I would be a very rich woman.

If a part of the human body or a specific organ is supposed to work a particular way, you can pretty much guarantee with my kids that it won’t. If unusual presentations or the extraordinary were olympic sports, my kids would be gold medalists. Several times over.

So over the years, being able to talk to those who understand what we are going through, who have felt left out, different or isolated has been incredibly important and helpful.

If one in 17 of us will be affected by a rare disease in some way, IT COULD BE YOU

Please click on some of the links above to find out more and if you can, please consider fundraising or donating: https://www.raredisease.org.uk/donate/      https://www.undiagnosed.org.uk/donate/

 

 

 

 

Tonight Matthew I’m going to be……

An adult!

Strictly speaking I ‘adult’ every day, albeit some days more successfully than others.

Yesterday however, I ‘adulted’ myself to the nines.

So that you can feel comfortable continuing to read and for the avoidance of any misunderstandings, I should reassure you that this post is perfectly respectable and I won’t be revealing anything x-rated or of a delicate nature. You can all breathe a sigh of relief and resist the notion of poking out your own eye-balls/resorting to mind bleach for fear of dodgy pictures and such like!

I don’t know about you dear reader but the majority of the time I don’t feel old enough, responsible enough or even qualified enough to do the “adulting” parts of life. Certainly not with success and authenticity in any event.

Apparently however, being married having children, dog ownership (he might dispute that as pretty sure Milo thinks he owns me) a mortgage and all the other infinitesimal accoutrements of life plus being over a certain age means I automatically qualify as an adult… and there’s no resignation option (well unless you ‘check out’ entirely but that’s generally speaking a bit drastic)

Over the last year particularly, “adulting” has been a part of my life I’d quite like to have run away from.

Somehow wherever I hide, no matter how precisely I have chosen the deepest, darkest recess or how carefully I stick my fingers in my ears and shout la-la-la, the necessity for “adulting” always has a way of finding me….darn it.

And even before last years ‘annus horribilis’ I must confess that I had very often felt like a player in that game “Hedbandz” rather than a real adult.

For the uninitiated, the game compromises of a plastic head band device with a slot in which you stick a card in which states the object/word/profession and the wearer has to ask a series of questions to try & work out what or who they are.

For added ‘fun’ you can do a timed session so they have to guess in a specific time period or a specific number of questions. Adding alcohol into the equation for the ‘Adulty’ version I’m sure can only enhance the fun 🙄 But never in a million years would any card ever depict me as an adult; in fact I think I’m possibly only marginally up from a lemming….

Anyway, what I mean by my ramblings above is, in theory I suppose I should know I’m an adult but the actuality is very different and frankly I really don’t feel I’m quite mature enough to make life or death (somewhat over dramatic!) decisions on a day to day basis when I can barely decide what to cook for dinner!

So now I’ve long-windedly explained that, I’ll get to why I ‘adulted’ properly yesterday.

For those of you who have followed my blog for a while or who know me in the ‘real world’ you are probably familiar with my involvement in SWAN UK.

SWAN stands for syndromes without a name and it is the only specialist support network in the UK dedicated to families of children and young people affected by a syndrome without a name.

Having 2 children who are classified as SWANS – they are both medically complex and although they have multiple diagnosed difficulties/needs, we don’t have an over-arching diagnosis that draws everything together – getting support from SWAN UK over 5 years ago made a huge difference to myself and the whole family. In fact, if we had not joined SWAN UK (its free!) we would have had no idea where to even begin to think of living when we moved to the UK some 4 years ago.

Mr Def Not The W’s was allocated Leeds as a base when he joined his new airline but we knew nothing about the area, about hospitals, schools, housing and services and so it was to my trusty network of online friends that I turned to to seek advice and guidance in helping us formulate a plan.

Of course SWAN UK’s services go far beyond the things I mention above. You can read more about the vital support they provide here: http://www.undiagnosed.org.uk/

Over the years, the advice, reassurance, sense of belonging and community not to mention the family days out, coffee mornings and get togethers have been a huge source of comfort, support and a wealth of experience for me.

Back in 2013 it became apparent that holding down a job, even working from home as I had done since 2008, in a role that I could fit around my children, was no longer viable.

I eventually found that in order to keep on top of work I was in a seemingly endless cycle of being up very early, going to bed very late and working all the hours in between that weren’t occupied with the needs of the family including weekends. Something had to give. It was *almost* my sanity.

Although I don’t miss the crazy relentlessness of those days and we are fortunate in that we can (just about) manage for me not to work (and are hugely grateful at times to our parents for stepping in when an unexpected bill/costs rears their ugly head) I do miss that feeling of achievement and accomplishment.

So in September 2015 I decided I would like to try and do something useful with my life and if possible, give a little something back.

I recognised that combining this with (at the time) 3 children with extra needs was going to potentially be problematic. (Turns out we now have 4 children with additional needs, although our eldest is almost 18 and would revolt against the use of the word child!)

I decided to volunteer to be a SWAN UK parent representative for North Yorkshire…. if they would have me! And they did.

In fact, this was absolutely perfect because recognising that caring for medically/physically and or cognitively complicated children can mean life doesn’t follow the best, most carefully laid plans, SWAN UK are happy for parent representatives to volunteer as much or as little of our time as we are able to give. They also understand that sometimes we have to drop everything with little to no notice and have always made it clear that the needs/demands of our children, wider family and ourselves are paramount.

Over the years of being a SWAN UK parent representative, I have spoken at a Rare Disease conference about my experience of being a parent of undiagnosed children; I have contacted my MP about being part of an APPG (all party parliamentary group) to discuss and raise awareness of being undiagnosed and the implications that has on families as a whole, not just the affected individual. I have visited Parliament and spoken to a wide variety of professionals about the difficulties of living with the unknown and unexpected as well as assisted in organising days out to celebrate Undiagnosed Children’s Day (last Friday in every April) arranged coffee mornings and fund-raising events.

I don’t want to come across as holier than thou but aside from (hopefully) raising awareness and sign posting SWAN UK, it did make me feel useful and purposeful again.

It gave me an opportunity to step outside the role of parenting my own children’s medical management and hopefully gave a voice to others in a similar situation.

Anyway back to the reason behind the recent adulting: after something of a hiatus in 2017, I attended a professionals meeting at our local hospital.

Having contacted the Harrogate and District Hospital administrative team (via FB messenger no less!) I pretty much threw myself on their mercy. They kindly directed me to the Head of Paediatric Nursing and The Head of Paediatrics and we set up an appointment Gulp.😳

The fact that the head of paediatrics is also my children’s consultant was not lost on me and was more than slightly daunting.

Somehow, seeing me in a different role to G Man or Minx’s Mum felt strangely discombobulating; at least in the run up to the meeting itself and I was plagued with disconcerting dreams that I would somehow disgrace both myself and SWAN UK.

Nonetheless, I asked SWAN HQ to send me some literature and armed with this, my trusty, very bright pink SWAN UK bag, business cards (get me! I’m posh!!) and a lanyard, I put my big girl pants on (erm figuratively you understand, I haven’t gone totally Bridget Jones yet) and my “grown up” clothes on.

Being only 5ft almost 3 inches, adulting clothes usually involve heels for me. Fretting that I didn’t want to look like I was trying too hard or heading out for a slap up meal, I opted for heeled boots, a patterned skirt & top, with a bit of jewellery and a swish of eyeliner & lippy.

On the inside I may have felt about 5 and was quaking like a jelly but externally I *hopefully* projected confidant, knowledgeable and approachable….

Obviously I couldn’t really ask those present at the meeting if I had successfully captured that but my audience were enthusiastic and receptive. They were keen to read and then display the literature I provided and told me that they would be disseminating the information to fellow colleagues, the Paediatric ward, Child Development Centre, Parents Room and Paediatric clinics. I also got agreement to have a stand in the foyer of the hospital to coincide with Undiagnosed Children’s Day in April. So all in all, I think it went well.

I came away feeling positive and uplifted and like a real-life proper grown up for the first time in a very long time. I’m pretty sure I didn’t have my skirt tucked into my knickers at any point or commit any other embarrassing epic social faux pas’s so all in all winner winner… I hope…. 😊