Smoke & Mirrors…

Busy. Keeping busy. Every waking moment. Planning, doing, moving and shaking; albeit not in the term of “big business” more anxiety and jangling nerves that leave my hands jittering and spilling drinks, dropping bottles (gaviscon off the garage floor anyone?!) and generally causing me frustration and embarrassment.

My mind is never still, nor am I physically. Tick tock tick tock. I have come to the conclusion it is a protective measure: too much time on ones hands to ruminate is dangerous. Thoughts come unbidden.  They still have a tendency to take me by surprise: a mental stock-take of the medicine cupboard; an appraisal of potential “weapons” – it’s amazing what you can do with the most run of the mill household items. The need is still there. Particularly on the bad days.

The house is clean, washing up to date. I have baked, entertained, ironed, meal planned and filed paperwork like a woman possessed. 

I look well. I have make up on, painted nails, hair clean, smelling fragrant. Not only is it my armour, it is an artful misdirection. A new take on the magicians slight of hand. I show what I want you to see. 

Slow down. Take time for yourself they say. Rome wasn’t built in a day. Rest when you can. Why? Will that be the magic fix? 

There are yet even more people involved in our lives now, more meetings, appointments, frustrating phone calls & emails. Everything is happening and yet time stands still. Limbo. At the beck and call of authorities who push deadlines and time frames then move the goal posts at the 11th hour. I no longer want to be reasonable and considered yet moderation is key.

I am raging. I burn with white hot anger. It spills over to my every day life. Fragile children, already clingy, needy, uncertain. They demand, understandably,  so much from me. I am torn in wanting to soothe, appease, console; but I am selfish. I feel conflicted and unsure of my approach with them. They want answers to promises I cannot make. My ferocious, voracious stance is only matched by my impotence and threatens our burgeoning protective bubble. The bubble is as delicate as those blown in childhood from bottles. 

I am told I need to stop with guilt. Ha! It is a laughable suggestion:  I am a mother, a woman & Jewish at that!! We give the Catholics a good run for their money where guilt comes in! If only chicken soup really did cure all ills. I’m sure the NHS would be most grateful though big pharma, maybe not so much?

Do not get me wrong. It is not all black. There are things to enjoy and things to look forward to. Realisations of how much friends and loved ones. mean. I hope they know how appreciated they are – both my virtual, on line support network & the flesh and blood variety. Guilt creeps in when I am too tired to reply or comment. I should be able to support others as they have done me but I cannot find the words, nor sometimes the energy. 

I am in equal parts engaged and yet withdrawn from the real world. I keep waiting for the sense of normality (whatever that is) to resume. Instead I feel I am wavering, teetering. I am reminded of the Stevie Smith poem “Not waving but drowning.”

 

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 ūüí©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? ūü§Ē) 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 …. 

D-Day….Red shoes Part 2…

image.jpegYesterday was D-Day – The Day I spoke at the Rare Diseases UK AGM in front of various learned bods and alliances of support groups etc.

I have had so many wonderful messages, e-mails and texts asking how it went and am truly overwhelmed by the support; it means a lot. Since everyone was still awake by the end of my speech and no one threw anything at me (mind you as my dear Father pointed out, have you seen the price of fruit these days?!) I am counting this one as a win.

Yes, it was nerve wracking and I had sweaty palms (bet you are glad I shared that aren’t you?!) but the main feeling ¬†I came away with was empowerment. So often as a parent we are at the whim of the medical teams and therapists; so often we wait passively for tests, results, follow up consultations and such like that the lack of having control, feeling disempowered, becomes our norm. More disconcertingly, you don’t even realise that’s what you have become used to, until something – ¬†in my case the opportunity to take part in the discussions at the AGM – ¬†makes you feel alive again. I can only describe it as akin to feeling numb to everything most of the time – maybe because we parents have so much invested in our children and the lack of diagnosis over time saps your energy; we become a faded, more jaded and insipid part of ourselves? I can’t say.

What I do know is that having people listen to our experiences as a family, acknowledge the battles we fight and most importantly recognising that things need to change for all families and patients involved with complex care needs was so very important. Not just for me but for the wider community as a whole.

It was most interesting to hear from Larissa Kerecuk, the Rare Disease lead from Birmingham Children’s Hospital and the plans that have been put in place to improve services, including a whole new building block being dedicated to paediatrics department specialising in rare diseases. Inspiring and definitely the way forward! Whilst I certainly wouldn’t wish a rare disease on any one, particularly a child, patients and families utilising their facilities when the project eventually comes to fruition can be assured that they will be treated in a fantastic facility, thought through in minute detail and concern. This can only be a good thing and I will follow their plans with great interest.

To listen to Jo Goode’s experience of having a very rare condition (dermatomyositis) and the battles she has faced (and still faces) over the years to get her diagnosis, even now to access appropriate treatments was both insightful and familiar in spite of the differences in her needs and those of our daughter. In fact, there was much nodding of heads all round the ¬†room from those who have obviously fought similar battles and could relate in ways that only a patient or carer can.

Although I thought when I first stepped up to the podium that I might regurgitate my spinach and egg muffin over the first few rows, ¬†I came away uplifted and empowered (& probably not just because I’d had a night in a sumptuous hotel room away from a beeping feed pump and the clamouring of my children, although I am sure that helped!) ¬†I really felt that I had contributed something useful and that those involved were striving for the best possible outcome for all affected by rare diseases in one way or another.

Whilst it was lovely to get home and see the family,  the irony of returning to my small folk who completely ignore everything I do, say and suggest after such lofty heights of the morning was not lost on me.

So, would I do it again? Hell yes! Watch out SWAN UK and Rare Diseases UK, you may have just created a monster!!

 

 

 

The Good, The Bad….& the ugly….

I threw my toys out the pram a few weeks ago….figueratively you understand although I must admit I did feel like throwing things literally as well…..sadly, I am (allegedly) a grown up and this sort of behaviour is frowned upon…unless you are at a Greek wedding, or so I’m told.

What was the reason for my strop? Multiple appointments from different specialities at Great Ormond Street (GOSH) on different days and different weeks. Dramatic moi?

Well maybe, but over a 6 week period, GOSH had managed to send me 6 separate appointments necessitating 6 individual trips and at cost of + or minus £100 a pop, not to mention the disruption to schooling and trying to sort out childcare and cover for our other children as well, I reached the point of giving up any pretence that it was doable. I am not superwoman and much as admitting defeat is not in my vocabulary, something had to give.

The irony of having set up 3 appointments in the same week 6 months previously so that we could avoid multiple trips was not lost on me. None the less, only one of those appointments had been left as originally planned and everything else juggled about plus some others added in for good measure.

Now don’t get me wrong. I do not expect the NHS to kow-tow to me and my every whim but it would be nice if the individual teams concerned AT THE SAME HOSPITAL liaised with one another (especially as ALL the Minx’s issues are interconnected) and a bit of forethought and planning went in to the mix so that we could see people in one specific time frame, over several days in the same week – ¬†which was the point of the original plan.

In fact I think this perfectly illustrates why an undiagnosed children’s nurse is so very necessary. Did you know that GOSH will be the first hospital in the UK to employ someone in this role and it is believed to be the first such position in the world? ¬†The idea behind this is that there will be a dedicated specialist nurse who will help families and children like mine and act as point of liaison between services to oversee all aspects ¬†of care. ¬†Interviews for this noteworthy and ground breaking role have started but there won’t be a dedicated person until 2016.

Nonetheless, it will be very welcome when that person does seize the rains and if all goes to plan, I believe it is the intention to have 50 such roles throughout major hospitals in the UK. Yey;  parents such as myself will be breathing large sighs of relief all round! (Note if you know someone who would be perfect for this role, and really we are talking Mary Poppins on steroids to fill such an important position, have a google at the        Roald Dahl Charity      info for more details, position is still open  as date of writing )

Anyway, my good humour having been throughly displaced, I fired off polite but firm e-mails outlining why 6 separate trips were not possible and asking what should/could be re-arranged.

One of the appointments in particular had me scratching my head (& no it wasn’t nits!) We had received an MRI but it didn’t say what for and just told me I needed to allow an hour and a half for the scan. I assumed it was to look at the Minx’s spine in more detail since the scopes of her stomach and bowel plus a procedure called manometry that had been done back in October 2015, had indicated a potential spinal anomaly.

Having phoned the department to check if this was the case, I was informed “computer says no;” it was to scan her fore-arms….this perplexed me quite a bit and a sneaky gut feeling had me wondering if someone had (inserting technical term) “ballsed up.”

Not wishing to waste my time and money but more specifically the NHS’s too, since scans like MRI’s can cost hundreds and hundreds of pounds, not to mention that a more needy child could miss a valuable slot, I attempted to pin down someone, anyone in fact from the various teams involved.

I think there was probably more success in looking for Shergar than getting anyone on board with this. No one wanted to accept responsibility, ‘fess up that they had booked the scan for what, if any particular purpose or stick their head above the parapet as to just how necessary or otherwise the scan might be. Each different department seemed to suggest that someone else could help.

Whilst it has often been mentioned in the past that a scan of the Minx’s arms needs doing at some point, (because of her upper limb arthrogryposis) there has been no urgency and it was suggested as one of those at some unknown dates in the future to coincide with other things scenarios rather than a specific request, especially as it won’t change the management aspect of this part of her care.

Such a scan didn’t seem helpful in the context of possible spinal issues bearing in mind that she has also had other upper skeletal scans, the last being May 2015 and it made even less sense ¬†when I received yet another appointment for the spinal MRI – naturally of course they couldn’t schedule the 2 at the same time….Sigh….

So fast forward through a bit of passive/aggressive key board warrior-ing on my part with GOSH, I eventually got a phone call from the neuromuscular department that went something like this:

“Hello, are you Minx’s mother?”….yes….”well the thing is the forearms scan could be useful but then again maybe not so ultimately, you need to decide whether or not your daughter should go ahead and have it…..”

It’s not often that I’m lost for words but I did open and close my mouth like a guppy for a few seconds whilst collecting my thoughts, much to the amusement of my taxi driver. ¬†As it happened I was actually on my way to GOSH for one of the other myriad meetings at this point.

Eventually, I did manage to reply “Well, I’m so glad I went to medical school for all those years and am now sufficiently qualified to make that decision…oh no, wait a minute that wasn’t me, that was YOU and YOUR Colleagues…!!” Que embarrassed silence.

On the basis that we have managed so many years to date without the scan of her forearms and reasonably assured that since Minx’s most problematic issues relate to gut/bowel function I declined the scan. However, although apparently from a neuromuscular standpoint, as a parent I have enough qualifications to decide on the medical necessity of the scans validity, according to the ¬†MRI department, this was not the case.

Having phoned to ask them to cancel the scan (curiously enough not trusting that the message would be passed on despite promises to the contrary) I was asked when I wanted to reschedule for. Shocked silence followed when I declined and explained why – maybe they were making guppy faces like I had? I was then told I was not allowed to make that decision and they would have to refer back to whoever had arranged the scan originally and get back to me. Good luck ¬†with that I chortled and funnily enough I have not heard from them again….

So fast forwarding through various appointments, despite my best efforts, to combine where possible and some co-operation from a few departments, it has still been necessary to undertake 4 trips in as many weeks.

Cutting out the boring bits, we were relieved to learn that spinal MRI was clear and normal. Whilst this is essentially good news, it does not give us any clearer answers as to what is going on and why the Minx is struggling so much sensation-wise  with both bladder and bowel issues.

One of the other tests showed that her colon was absolutely jam packed (and I am afraid there is no delicate way to put this) with poop and she has very slow transit -essentially the time it takes for the stomach and bowel to move food along and expel it. It probably does go at least some way to explaining some of her pain issues. We do know that both the function of the nerves and muscles throughout the gut/bowel are ineffectual at best and at times, cease to work in entirety.

Having discussed matters in detail with both the Surgeon and Gastroenterology, various plans are afoot to help her with this but unfortunately we have already worked our way through Plans A & B and plan C, a surgical option, is looking ever more likely next year. More about that another time.

One piece of very good news that we had is that GOSH asked us to participate in the 100,000 genome project. This is fabulous news and something that we have been hoping for for quite some time.

Essentially, this is the largest genetic study currently accessible in the United Kingdom and will provide a date base for the NHS to help families like ours, both now and in the future. It may give us the best opportunity to obtain a unifying diagnosis for all the Minx’s (& for that matter, our youngest son’s ) difficulties. Potentially, it will allow for better management of her care and give us an idea of what the future holds for her. It is both terrifying and inspiring all at the same time.

Although we have undergone some genetic testing in the past, this was far more specific to presumed conditions (all of which have come back as negative to date) and so has not been helpful in the overall clinical picture.

Myself, hubby and the Minx have now had our bloods drawn for the study and signed the consent forms so it’s quite strange to think that somewhere right now, ¬†boffins are cross referencing ¬†our medical history and looking in detail at the Minx’s specific issues to decide how initial testing should be best commenced and that our blood samples will be whizzed across to a laboratory and analysed.

We have been told that result could take up to approximately 18 months or paradoxically that we STILL might not get answers but genetics is such a fast moving field with incredible new discoveries on a regular basis that this too could change and no answers for now, doesn’t always mean that we will never get one. So all in all, we are definitely a step closer than we were. As the saying goes, you have to be in it to win it.

Do I want to know? Are we ready? After 7 years in the dark (Minx had a birthday last week) I always thought the answer would be an unequivocal yes but I am reminded of Pandora’s box – after all, once the lid is off, it cannot be merely re-closed without consequences.

So yes, *I think* I am ready to know once and for all and once the novelty of having just been accepted on to the study wares off, I guess some sense of normality (whatever that is in this house) will resume and I will forget about it until maybe a phone call or a letter drops on the mat…. out of the blue….