Monday, 23 April 2012

The Elephant in the Room.....

Ok, so I envisaged my next post to be about Rowan's birthday and how wonderful/amazing/miraculous he is, and no doubt in a few days time that is exactly what I will be posting, but I have been sent several requests asking about Rowan's 'medical' side.  Like what half the words I use actually mean, a kind of glossary with pictures or something.  Which I will be working on, for the less 'medicalised' readers, and pictures always help, what is it they say, a picture paints a thousand words?  But something else has been bugging me since I wrote my first blog.  See, I wasn't completely upfront with you all.  There is an elephant in my room.  While merrily writing about the children and the big impact they have on life, I failed to mention another very influential part of my life.  While reluctant to talk about specifics, I feel I should say something.

There is a group, a movement, a revelation if you like.  It's called 'Time to Change'.  I wonder how many of you have seen it?  It's about my Elephant.  Mental Health.  Ok so I'm pretty sure that almost every Mum with a child (or more) with complex needs, has problems with mental health at some point.  But I have had my mental health problem since before I even thought about children.  Before I even knew it was a problem.  In fact, I didn't really realised I had as big a problem as I do, until Cameron was about 6 months old, and I was signed off work for 2 weeks with stress.  I was 20.  Cameron was in and out of hospital, I was desperate not to let my employer down, I loved working, but something had to give.  I had a kind of meltdown.  I was signed off 3 times in a row, and the GP sat me down and told me he recommended I gave up work and looked after myself and my 'sick child' and my 3 year old.  He prescribed me a councillor and some anti depressants.  How many people have been in that situation? A lot!  I don't have statistics, but I guess the chances of you being prescribed anti depressants when you have a complex child like Rowan (and a lot of his little friends) are rather high.

Depression is crippling, crushing, hopeless, it's awful.  And anyone who says otherwise has never really been depressed.  I have 'clinical depression'.  I really know what the difference is, or how they diagnose it, it's just a box that is ticked on a piece of paper (one of many but I will get there).  So I take the anti depressants that are kindly sent my way, tweaked every few months, changed, and I don't feel any different.  I think about suicide all the time.  Now, I really don't want pity, and I don't want a list of reasons why I shouldn't feel like that, or reasons I shouldn't contemplate it, because I've been there, done that, heard it all, and I know.  But I can't change how I feel.  Unfortunately.  Depression is a chemical imbalance.  It is not a choice.  I don't 'choose' to feel this way, it's not an attention seeking behaviour, I don't LIKE being negative, so much so, I will pretend to the world that everything is fine, normal, wonderful even.  I'll pretend to laugh, and cope, enjoy life, but it's all just a mask.  Underneath, well, no one really wants to see underneath.  I don't let many people in, because, no matter how many people tell you 'it's ok' 'people accept it' it's rubbish.  No one wants to hear it, no one wants to spend time with the depressed person sucking the life out of everything and everyone.  And I understand that.

Depression isn't the only thing I suffer with though.  Or have problems with.  And I wouldn't even say it was the biggest thing I struggle with, although the suicidal feelings and thoughts and sometimes actions are quite distressing, I make a choice.  I am fairly in control.  I think the biggest thing I struggle with, is the thing I talk about the least.  It's something that no one understands, not even the 'professionals'.  It's something I have struggled with continuously for the last 5 years at least.  And even as I know I am going to write it down for the world to see, I am worried about the comments it will bring.  I have something, which can only be called by the professionals, as 'psuedo-psychosis'.  Ok that wasn't so bad, mainly because no one will really know what that means.  Basically, I am in a state of psychosis, but not at the same time.  Confused?  Let me try and explain, while you all read in horror and think I am a complete nutcase.  And I'm fine with that, because I also believe I am a nutcase.  I see things and hear things that aren't real.  So, here are people wondering if I am schizophrenic, and the answer is no.  I see people (no not dead people), I see objects, I see written things, animals, I hear people but don't see them, I seem them but don't hear them, and then I have a group of 'people' that I both see and hear and I can have a conversation with.

Ok so it sounds weird, and I'll admit, it's weird.  But, this is what I live with.  This is the reason I won't always answer you when you talk to me, or why I don't really like social situations.  It's the reason I won't talk to strangers, because how do I know if they are real or part of my 'illness'.  I have made a few mistakes, ok more than a few, where I will talk to something who's not 'real' much to the amusement of the general public, and I leave quickly mortified.  The things some of these people say, are negative, degrading, nasty, scary, threatening.  They are not positive people at all.  Ok so I guess this is where I give an example, while trying to preserve some kind of.....Ok I lost that already.  I have applied to do an OU course.  Am I crazy?  Yes, and I have the papers to prove it.  Anyway aside from that, my mental health worker phoned the OU for me to find out about financial discounts, and more information etc.  Why did they phone and I didn't phone myself?  Well, I don't like making phone calls.  So my worker phoned for me, and they said I needed to register that day, my heart skipped a beat.  I don't like making phone calls, and to have to make the phone call while someone else is watching, intently for the signs that I am certifiably crazy, makes it even harder.  Bear in mind all this woman wanted was my name, date of birth, address, what course I wanted to do, and what my 'qualifying benefit' was so that she could give me my PI number.  Simple yes?  No.  To start with there is just me and my mental health worker in the room, isn't there? Nope.  There are an 'extra' 4 people in the room.  With that 'whatever, why bother' look.  I get handed the phone.  And this is what I hear, 'I don't know why you're bother, no one will want to associate with you' 'You'll never be able to do it, you can't even manage a phonecall' 'Just hang up the phone, you'll be dead before you complete it anyway' 'That woman is only talking to you because she feels sorry you need a mental health worker to phone for you' 'You'll never amount to anything, remember, you ruined your life, and you still are'.  I guess you get the picture.  I don't know how the 'general public' will react, ever. 

Someone once asked me what it felt like.  Ok, so that was just one phone call but it happens 24/7.  You know how sometimes you think you hear the phone ringing, but it wasn't? Or how in town you look around because you thought you head someone call your name? It's a little bit like that, but constant, with no break, and it's been going on so long that sometimes it's hard to tell what's real and what's not.  If you want to know how it feels, sort of, try this.  Put some music on headphones, quite loud, but not so loud you can't hear anything or anyone else, but loud enough that's it's not easy.  Then put the TV on, but turn the sound off.  Do not look away from the TV.  Then try and have a conversation with a friend.  That's sort of how I live my life.  How do I do it, is a question I get asked, and the answer is, well, I have to.  I can filter some of it now, I can ignore it to an extent, I don't always win though. In fact I probably lose more often than I will admit.

The pressure is immense.  Then throw into that a complicated child who needs IVs, and meds.  Concentrating to draw up meds, or connect the TPN, is exhausting, but I can do it.  Those people who need to know what I struggle with, do, and I have 'back up' plans for a 'bad day'.  And infact, the person who needed to know most, was the person I dreaded telling most, but has been the most open minded person about it all.  It's not a lifestyle choice after all.  I'm sure someone is wondering, if the medications they use for schizophrenia would work to eradicate the 'psuedo-psychosis'.  The answer is yes, but no.  I do take anti-psychotic medication.  I have been on it for years.  I have tried a couple of different types, but one of the biggest side effects is sedation.  I can not be sedated with Rowan's needs.  So I take an anti psychotic that does not sedate, at the maximum dose that I can take in the community.  And it takes the edge off.  I seem to have a huge resistance to medications.

From Pseudo-Psychosis, to Anxiety.  So it's fairly obvious that with all that going on, and clinical depression, that anxiety was bound to make an appearance too.  I have a fear of going out.  I have a fear of new places, new people (see above).  I have a fear of underpasses (subways).  I have a fear of noisy or busy places.  And this manifests itself in panic attacks.  Now, if you've never had a panic attack, it feels like you are dying.  You can't breathe, you feel like you're being crushed, you can't move, you can't do anything.  You are rendered useless, so you are completely vulnerable to whatever you are scared of.  It's debilitating.  I am fairly in control of this now.  And situations that I know I just can't deal with, I either take someone with me (which helps, as distraction) or I dose up on Diazepam.  I hugely struggle with trips to GOSH for Rowan.  On the train, to London, it's busy, it's noisy, it's restricted, and all the anxiety around Rowan and his TPN and feeds on the train etc, it's a recipe for disaster.  Now, most people will avoid whatever causes the panic attack.  I don't have that option.  I can not avoid a GOSH appointment.  I have to go.  So I take diazepam.  I have all the breathing techniques, all the distraction stuff, and it helps, sometimes, but there is always a situation I struggle with, or in.

Just in case you are wondering if that is it, no.  I have flashbacks too.  These are triggered, they are not generally normal.  Basically, for a few seconds, I literally go 'back' to an event that I would rather forget and 'relive' it.  I know a lot of my triggers, so try to avoid it (obviously!) but a few times a week (on a good week, a few times a day on a bad week) it happens, and leaves me exhausted, and emotional, generally a wreck.  I will lash out, shout about stupid things, I just react badly.  Sometimes very badly.  These 'events' are very negative events.  And I'm not prepared to talk about what some of those 'events' are, that's a little too much information, but if I wasn't feeling suicidal before, I definitely am afterwards.

I have bad 'coping' strategies.  But I get from one day to the next, one way or another.  My kids are looked after, the are fed, and clean, and all their medical needs are met.  And to be honest, most people don't even realise I have things other than the kids to worry about.  That is what I want.  I don't want pity, or praise, or admiration, or recognition, this is the way my life is.  So what do I want?  Why have I written this for the world to see?  What has made me look a complete nutcase to the whole world?  Well, I just want a little bit of understanding.  When you talk to me and I ignore you, I don't mean to be rude.  When I swing from seeming 'happy' to 'distant, withdrawn, negative' don't take it personally.  My mask just slipped a little.  I do the best I can, but even superman has a flaw.

The other reason I decided to speak up about it, is because, because of my mental health, we have been through a child protection conference.  Because of my mental health, someone decided my children were at risk.  What happened was, I overdosed.  For the first time in my life, I told someone what I'd done.  I went to hospital, got checked out everything was OK.  Came home.  I went to respite the next day (where I go, on my own, 1 night every 4-5 weeks, for me to recharge my batteries, press the reset button).  Everything seemed fine, I expected a fall out, but heard nothing.  I went to respite and said to the workers that although I felt an idiot for what I'd done, I felt happier that I could tell someone, and my world doesn't fall apart like I thought.  WRONG.  On the Monday morning, a random group of people entered my house, and told us we were going through a child protection conference, because of my actions.  No one could really explain how me overdosing was putting my children at risk.  Lee was here, another adult in the house.  My children were safe.  This was not enough for this one particular person.  We went through the horrific process of Child Protection.  We got through it (although it took 5 weeks, not the 10 days the government says it needs to take!) and it was determined that the children are not at risk.  The risk is to me.  Not the children, and that risk is something my mental health workers carry and manage.  But the damage the process has done, is irreversible.  If I struggled to talk about my mental health before, it's practically impossible since.  I am never honest, which is why I have to pretend everything is ok.  At least that way the only person it really affects is me.

So this is the Elephant in my room.......mental health.  It affects every single thing I do in my life.

Thursday, 19 April 2012


So, after much deliberation, I have decided to give this blogging thing a go, for several different reasons.  I have had a lot of problems posting updates on the children, specifically Rowan, people liking a one up man ship type game.  Personally I left those kinds of games in the playground a long time ago, but unfortunately amongst all cliques of people there is always a competition about one thing or another.  Unfortunately what I have experienced has been who's child is 'sicker', who's child needs more care, who's child has been in hospital most.  I am not prepared to enter into this world, frankly I do not have enough time or energy to deal with all that nonsense.  So, if I put it on a blog, those who actually are interested in what is happening in our crazy lives, can find it here!

I also hope that maybe one day, someone will come across this blog, and find a little bit of understanding, a little bit of information.  We go through this journey pretty much on our own, lots of people dip in and out of our lives, we are thrown into situations we are not equipped to deal with, with people we would never normally associate, and all of a sudden, we find ourselves in an alternative dimension.  There are only a few people who live in this dimension.  It has no name.  It has no rules.  And there is one thing that connects us all.......unanswered questions.  Lots of them.

So, for those who don't know us, or what on earth I am talking about, let me do a little introduction to the subjects of my blog.  One by one.

Katrina is the eldest and the only girl.  She is very bright, and very sensitive.  She is your typical know-it-all 9 year old girl.  She loves reading and writing, she goes to Brownies, and has a very active social life, between Brownies, and Young Carer's she has a better social life than I have!  She loves her Kindle and answering her texts from her friends.  Your typical pre-teen really (yes at 9) While all this is going on, she also has a few other problems.  Due to the situation we have been thrown into with her brothers, she does not have the routine and consistency that most children her age have and inevitably this causes a few problems that manifests itself in the form of meltdowns, and screaming tantrums.  Mix this with the fact that she may also be having hormonal changes, it's a recipe for disaster.  But we, just as the rest of the world, muddle our way through, hoping at some point we will have enough to turn her into a productive member of society.  Many people tell me that if we are going through this now, the teenage years may be a little easier on us.  I am not convinced this is the case, but I haven't given up on her yet, it's difficult living in our house!  I am often amazed by Katrina's ability to cope in a crisis, she has been through a lot in her 9 years, more than most children her age.

Cameron is almost 7, and is the sensitive one of the children.  He is a Mummy's boy through and through.  He gets upset at the smallest thing, while dealing very well with the larger issues in our household.  He is generally shy and quiet, very caring and calm.  We rarely have to tell Cameron off, or ask him twice to do anything.  He has a wicked sense of humour and everyday we see a little more of his personality.  Cameron is exactly like any other almost 7 year old, liking Phineas and Ferb, and Moshi Monsters, playing on his laptop, and loving his cats.  We jokingly ask him if he talks to the cats in some special language as we just don't understand the bond he has with Koko and Pops.  Undoubtedly they are Cameron's cats.  All my children amaze me, all in different ways.  Cameron has a lot of medical labels.  He has a deletion of chromosome 16p11.2.  To be honest, no one knows a lot about this deletion, and as far as we can tell, all it has done for Cameron is affect his speech and language, and his learning at school, and maybe his height (or lack of) although there is always more to learn.  Cameron also has a rare form of Coeliacs Disease, and he can not eat wheat, gluten, dairy, soya, or eggs, or anything contaminated by these allergens.  To the average person it sounds horrific.  And I won't lie, the day we were told we had to eliminate practically everything he ate, I thought my whole world has ended.  But we adapted, and Cameron went from an underweight child to a chubby, full of energy little boy, who began to thrive.  He also has reflex anoxic seizures, he has roughly one a month, and although commonly children outgrow these by the time they begin school, Cameron hasn't, in fact he had one yesterday.  Cameron also has a microtia.  We have never met anyone else with a microtia

From our shy, quiet, child, onto Ayden.  Who couldn't be more different from Cameron if he tried!  Ayden is our little tornado, you know it's coming, and there is nothing you can do to preserve the destruction it causes.  Ayden is loud, and boisterous, and clumsy, and did I mention LOUD!  He may only be 4, but is definitely the biggest personality in our house.  Lots of people see a disruptive, loud, screaming and demanding child.  Which he is.  But, what people don't see, is the caring side to Ayden, the imagination he has is like nothing I have seen in any of my other children.  He will pretend play for hours.  He LOVES Thomas the Tank Engine and the Ipad.  He loves nursery, and has a lot of friends.  He has a sense of humour that only a 4 year old can get away with.  He loves toilet humour.  He is your typical 4 year old boy.  There is more to Ayden though.  He had a rough start in life, although to look at him now, you'd never know.  We discovered that he too has the rare Coeliacs Disease that Cameron has!  He needed tube feeding and high calorie formula, for a while before he started to pick up.  The poor child went from severely underweight, to overweight.  He couldn't win.  No one seemed bothered, until Rowan (who I will get to in a minute) was diagnosed with Growth Hormone Deficiency.  Then a local doctor decided that maybe actually Ayden had the same.  He quite literally is too short for his weight.  He is a classic Growth Hormone Deficient child.  So each night he has an injection to replace the missing hormone, in the hopes that he will grow.  So far his weight gain has slowed considerably, which is good for him in so many ways.  He also had glue ear and a sleeping problem which seems to have been resolved (almost) since his Adenoidectomy and Grommet Insertion surgery a couple of weeks ago.  As Ayden has got older, and we have discovered more about Rowan, we also have discovered Ayden has a few similar problems.  Ayden is hypermobile, and has difficulty walking far, he now has orthotics in his shoes and these have certainly helped his clumsiness subside.  He also appears to have problems maintain his blood sugar levels and this is still being investigated.  The poor boy may also have astigmatism (like Katrina has) and in the next month or so may be sporting a pair of glasses, just like Katrina (although hopefully not purple!).  Ayden is the child I expect to be most affected later on, with living in the chaotic household he is living in.  For almost half of Ayden's life he hasn't has his Mummy or his brother at home.  At just 14 months old his whole world was turned upside down, but so far he has come out with it roaring (literally).  He is slowly beginning to show me unprompted affection, like the other day he stood on the stairs and called me.  He was about 4 stairs up.  I approached the stairs, where my little man was stood with his arms outstretched.  I asked him what he wanted (assuming he wanted to jump off the stairs while I catch him) and he said 'come here' so I moved closer and he gave me a really big cuddle, a proper squeeze.  Cynical mother that I am said 'what do you want?' to which he replied 'I just wanted to give you a big cuddle'.  Since then, every now and again he will come and sit on my lap and want to watch a film, or play a game.  Our bond may have been affected by our circumstances, but we will mend it one day at a time.

And so to our final child.  I feel he will be the one who steals the limelight of the blog.  If it weren't for him, I probably wouldn't have even considered writing a blog.  Rowan is undoubtedly a miracle (sometimes we have other names for him, but I don't want to alienate the younger readers).  Rowan will be 3 next week.  He is a cheeky, lively, happy little boy, who wants to be just like all the other boys and girls.  In a great many ways he is like every other 3 year old, he bites, he scratches, he sticks money in the PlayStation, he annoys his brothers and sisters, he has tantrums, and his favourite word is 'why'.  But in so many ways he is different.  He is a medical mystery.  I have a few friends, who have children with 'unknown syndrome' as their 'diagnosis'.  Rowan has a huge medical history, that literally, written on paper, weighs more than him.  Rowan is a HUGE Mickey Mouse/Donald Duck fan.  I mean HUGE.  I believe a lot of time in hospital, often results in a strong obsession with something.  Rowan may be 3 in a few days time, but he is the size of a 9-12 month old.  He weighs roughly 10kg (on a good day).  Why is he so small?  Well the simple answer is because he is.  He has a confirmed 'calorie handling problem' and a 'high calorie requirement' but other than that, we have no idea what's going on.  Rowan's 'labels' far....consist of.....hypoglycaemia, hypothyroidism, hypothermia, hypermobility, joint pain, reflux, stomach distention, growth hormone deficiency, food allergies, tpn dependant (which is nutrition fed directly into a line (called a Hickman line) which goes into his chest, very close to his heart), he is fed jejunally (into his small bowel) and has another tube into his stomach to drain off the excess gas/fluid to make him more comfortable.  Rowan has quite high care requirements.  He has good days and bad days.  He is just starting to walk independently but will use his Kaye walker, to which the general public find of great interest.  Rowan's biggest 'problem' is his calorie handling.  He requires 4500 calories a day.  The average adult (as I'm sure you know) has 2000-2500 calories a day.  This is a shocking statistic.  But this is part of Rowan.  Rowan has spent 2 years of his life in a hospital.  Flitting between our local hospital and Great Ormond Street Hospital.  Without the open mindedness and speciality of the doctors at GOSH, we wouldn't have Rowan today.  At 18 months old he was just 9lb 12oz, and not in a very good state at all.  I will not go into the ins and outs, as I am sure they will come up as we go along, but this is what has thrown our life into chaos.  Unexpected hospital stays and midnight dashes with suspected line infections (a big risk of having a hickman line), hospital appointments, and therapies.  I can not imagine Rowan without his medical needs, he just wouldn't be Rowan. 

So these are our 4 very different children, living in the madhouse!

As I write, we are waiting for lots of different things to happen.  Rowan is waiting to go to GOSH again for an emergency admission as he's had some problems with his blood sugars recently.  He is also waiting to go to King's College Hospital for a liver biopsy and a skin and muscle biopsy.  We are waiting for referrals to a whole host of doctors, just trying to find a suitable treatment plan for Rowan and see if we can improve his quality of life.  I am waiting to receive my first lot of Open University materials, and we are waiting to hear if Ayden got a place at the same school as Cameron and Katrina.  As always there are lots of things to be 'waiting' for.

I will post again soon, with more updates and more stories!!