post-traumatic

Ten Things I Hate About You

Posted on by Bluemama

Before we were introduced, I hadn’t really had any real drama in my life. The biggest thing I had to worry about was what we were going to have for tea, or whether I’d overindulged too much to fit into that dress at the weekend. And then you came along, and everything changed. Everything. And even when we met, i didn’t appreciate the impact you would have on my life, and everyone in it. Because what at first seemed like something that would have an effect on just one of my family, very soon demonstrated that it’s effects were more far-reaching than the immediate victim. Your tentacles reached across to touch all of my dear little family, and slithered into every part of my life. And whilst I try hard not to forget the good that came from meeting you, I refuse to accept that you gave those gifts to me. You did not effect those positive changes – those changes came from the strength that I managed to produce in spite of you, not because of you. And so let me tell you, Kawasaki Disease, all the things I hate about you.

I hate that you stole perfect from me. Because that is what you did. You stole the most perfect joy I had ever felt in my life up to the point that my daughter was born. When I look back now to those blissful weeks with my newborn baby, they are over-shadowed by the unseen threat of you. When I look at the few photographs I have of those precious weeks, I can recall the pure contentment that I felt whilst I drank in every inch of my perfect little girl. But there’s something else now when I look back as I find myself searching for signs of your appearance; how long had you been lurking, waiting to make your presence felt? Days? Weeks? Not months, as you made your entrance when Freya was just 7 weeks old, and took my perfect from me before I had even had the chance to accept that this was my life. I hate you for that.

I hate you for the damage that you caused, to my little girls heart and my own. Your physical attack on my daughters body caused damage that has since repaired to spite you, though we will never know what lies around the corner as you sneer at us from afar. The effects of the emotional and psychological onslaught that you raged upon me went far deeper than any physical impact you created. Far deeper and perhaps more permanent still. Anxiety is one of the gifts you bestowed upon me, and sadly you declined to accept returns.

I hate that you took me away from my family, particularly my son. I hate that your presence resulted in my absence and caused a fissure in relationships that, theee years on, we are still fighting to mend. I hate that you created mistrust in me, from those who trusted me the most, because my attempts to protect them from what you were doing to our little Freya were seen as dishonest and insincere. Because of you my children learned that sometimes parents lie. And you can sugar coat it as a white lie if you want to, but to a boy of 5 who is just adjusting to not being the most important one any more, a lie is a lie. You have no idea how much damage that has done to a vulnerable little boy who trusted his mother the most in the whole wide world. For that, I will always hate you.

I hate that you made me afraid. Afraid of life, afraid of death. Your ego will tell you that you taught me not to take life for granted, and maybe there is some merit in that. But you took away my innocent enjoyment of a life and replaced it with a life where I am constantly looking over my shoulder, wondering when time may run out for me or any member of my family. You can tell yourself that the fear of losing them has made me love them more, and that might be a little true, but mostly that fear has made me edgy and anxious and sad, and those feelings threaten any chance I had at savouring every uncertain second that we have on this Earth. I hate that you gave me that.

I hate that you show up, mess up and leave. The lucky ones manage to avoid any long term damage you try to cause, but there are still so many who are permanently impacted by your arrival. Less lucky ones might face an uncertain future with broken hearts, but at least they get a life.

But worse than that, you are too often allowed to take a life too young to be taken, and for that I hate you. I hate that we don’t know who you are, what you are, where you come from, or how to get rid of you. You are not welcome, and yet you show up anyway. The lives that you rudely interrupt are forever changed by you, but you don’t change. You just move onto your next victim, sending another family into turmoil and uncertainty and fear. I hate that we haven’t stopped you yet.

The World keeps Turning

Posted on by Bluemama

What’s in a date? According to the dictionary, a date is “the day of the month or year as specified by a number.” It’s that simple.  And yet dates mean so much to so many people.  Every day of every year marks something significant in somebody’s life; a birth, a death, a wedding, a break-up, the anniversary of good and bad events that have occurred in a lifetime.

For us, today brings mixed emotions.  It would have been almost impossible not to face today with some sadness at the memories of this day last year when we watched our 7-week old daughter slip away from us with the fear that we may not ever get her back.  It is the day she became critically ill, and marks the beginning of our journey with Kawasaki Disease; Freya’s Story.   It feels somewhat surreal to be sat here today, putting the washing on, clearing up the aftermath of the children’s lunch, normal everyday things that a parent has to get on with.  A year ago today our lives were changed forever.  Changed in so many ways, some bad some good.  How did last year change me for the worse? Well, for one it altered my perspective on this thing we call life.  We all believe we have the right to live our lives how we choose, and rarely stop to consider the consequences of the actions that we take.  Being faced with the possibility that your child might actually die turns your entire belief system on it’s head.  I had never considered my own mortality before then – why would you? You just coast through this life taking it for granted that it is yours for as long as you want it.  But there are much stronger forces at work than any of us are able to prepare ourselves for, or protect ourselves against.  People get sick.  Kids get sick.  This world is full of illnesses and diseases that affect everyone else, and we read stories about them in the News or on Social Media, and think “poor them”, but we rarely stop to consider that the trials we see other people facing from a distance may land themselves on our own doorsteps one day.

I had never felt so much anxiety about the brevity and uncertainty of life before the events of last year.  Now I find myself living a confused life, where on the one hand I wish to grasp it with everything I have whilst I have it – make memories, move mountains – and on the other hand I face it with a fear of the unknown, and a desire to stop time so that we might be able to let go of that fear, just for one day.  Wherever I walk I see beauty in everything, magnified like I’m seeing through the wondrous eyes of a child, but out of the corner of my eye I can always see a shadow lurking and I imagine that the Grim Reaper is sharing every moment with us.  I am reminded of that movie, Final Destination; you can’t cheat death, can you?

But, the 31st May is just a date.  It doesn’t really matter what the date was, Freya got sick.  It doesn’t matter what date we got our diagnosis, Freya had Kawasaki Disease.  It doesn’t matter what date they told us her heart was damaged, Freya’s heart suffered.  Even so, it is hard not to see these dates as milestones, those first hurdles you have to get over after any loss.  And I know I should be grateful that we didn’t have to suffer true loss, but this is still part of a grieving process, and I do grieve for the loss of that perfectly healthy, normal little girl that I was holding in my arms on the 30th May 2015 and all of the 50 days before it.  Some would say I am ungrateful, that I should get over it already.  I don’t blame them if they haven’t been through something like this.  And it isn’t like I don’t want to let it go.  Of course I do – that’s why I see a counsellor every week to help me with the trauma of the last year (as well as a few other troublesome things).  If anyone thinks that I want to be stuck in this perpetual limbo between sadness and joy, that I get any gratification from feeling tears prick at my eyes every time my youngest daughter shows me just how special she is, is mistaken.  I want to be able to move forward, forget the last year, make plans for the wonderful future that I promised myself for my family.  But KD doesn’t let you do that.  It doesn’t just leave, like a cold, or a sore throat; KD leaves permanent scars, physically and metaphorically.

I will allow myself to feel what I feel on these dates, these first milestones.  The day of her diagnosis (12th June) is likely to bring up a lot of the same emotions.  Hopefully I will be better prepared and can plan to do something that will change the memory of that day.  I had hoped to do something today that would give me a new memory of the 31st May, but the awful weather and the restrictions I place upon Freya’s indoor activities (I don’t want her in an indoor play area, during half term, in chicken pox season!) put a stop to that notion. So instead I have tried to distract myself with the children and the chores.  But I sat for a moment and watched the raindrops run down the window, an image that my eyes immediately chose to mimic, and it has left me feeling wretched.  Out there new memories are being made and new anniversaries created and the world just keeps on turning.  And I keep breathing in and out, and whispering to my heart, “It will get better one day.”

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A Recipe for Disaster

Posted on by Bluemama

So it seems I am suffering with post-traumatic stress disorder with a nice deep filling of depression, topped with a scattering of anxiety sprinkles.  If I were a cake, I’d be a fruitcake.

I was thinking this morning, after I left my second Cognitive Behavioural Therapy session, about what mental illness looks like.  What does someone suffering with mental illness look like?   I guess they look haggard and worn, frayed around the edges.  Scruffy, definitely; they wouldn’t have washed in weeks.  Tired, with dark purple circles under those sad eyes.  Hair scraped back in a ponytail in an attempt to disguise the oil slick it has become from days of neglect.  Shoulders drooping, head hanging down, slow lumbering gait where others confidently tread.  Yes, I reckon that’s about right.  Except it’s rare that you would get a real close look at one, because they’ll be under a duvet, or rocking in a corner; the lesser spotted hermit…

Sometimes, mental illness looks like this…

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“Nooo!” I hear you exclaim.  “She can’t be depressed! Look at her, she’s smiling.  And I know she isn’t depressed, because she lives in that nice house with those three gorgeous kids.  Anyhow, I saw her in the Wine Bar last week and she looked like she was having a great time!”

Don’t get me wrong, there are plenty of people suffering with a mental illness who meet the description above.  I’ve been there myself, duvet pulled up over my head, praying for it to be bedtime again.  But this time, it’s not like that.  Mostly I look like the woman in the picture.  Sometimes that face has to be painted on, that smile fixed in place with staples invisible to the naked eye.  Other times it’s real, and I feel real joy.  Sometimes, behind closed doors, when nobody is watching, I lay curled up in the corner of the sofa and cry.  I could cry right up to 3pm, then paint that face on and pass pleasantries with you in the school playground at pick up time.  Being a great actress comes with the territory.

I don’t want you to think that I am fake.  I’m possibly one of the least fake people you will meet.  It might be an effort to put on that smile sometimes, but I am generally a very sociable person and if I didn’t feel like smiling before we started talking, it’s very likely that I will be genuinely smiling by the time we part company.  I’m like that; people lift me.

And suffering with depression, either long-term or temporary, doesn’t mean that I am miserable all of the time.  In some ways, whilst this illness can be debilitating, I think I am one of the lucky ones.  I am very tuned in to my thoughts and emotions.  When I suffered with post-natal depression after my first daughter was born (nearly 12 years ago now), it was different.  I was severely depressed.  I believed that my husband’s family wanted to get me sectioned so they could have my daughter all to themselves.  I considered leaving, and telling nobody where I was going; figured I’d go live in some little hut by a lake in the Outer Hebrides or somewhere.  I thought everyone would be better off without me, and I would be better off without them.  On my worst days, I did not recognise myself in photographs.   And on worse days than that, I actually contemplated how much easier life would be if my daughter could just be gone…

I’ve always been a sensitive, thoughtful soul.  I guess I was predisposed to this kind of malady.  In my teens, my old bedroom at home was painted black and I wrote a lot of poetry.  I’ve never found it hard to cry.  I think I’ve cried an ocean in my years on this Earth.  I don’t believe I had ever been depressed before my experience with PND.  A bit of low self-esteem maybe, but not depressed.  But PND altered me; it’s like a part of me was broken that could never be repaired, and was the catalyst for years of on-and-off suffering with various mental health issues.  The last 12 years have been on the whole great, though peppered with periods of counselling, cognitive therapy and anti-depressants.  The last time I was prescribed anti-depressants was when I was pregnant with my youngest daughter.  The only thing that stopped me taking them was the risk of congenital heart defects for my baby; those of you that follow Freya’s Story will appreciate the irony in that.

Mental illness covers a whole spectrum of serious disorders in a person’s behaviour or thinking, with over 200 different conditions to choose from. Now, that was a bad choice of words; this isn’t something anyone chooses.  But you get my drift.  And although many people will suffer, with or without a diagnosis, with the same conditions all over the globe, the degree to which they suffer will vary with every individual. What I am going through this time is very different to anything I have suffered with before.  Firstly, the post-traumatic element is new; I hadn’t faced any real trauma before my daughter was diagnosed with a life-threatening illness last year, so that’s a first for me.  The treatment I am receiving is specifically designed to expel the flashbacks and help my brain to process the memories that have got a little lodged on their way to my long-term memory.  The depression isn’t new, however it has been nicely disguised, hiding in the shadows of the PTSD, waiting for the right moment to strike.  It felt now was a good time.  And then there’s the anxiety, and oh boy ain’t that a treasure!

So, just how much fun is it to live with me these days?  I guess you could ask my husband or my kids, but like I said, I’m pretty in tune with my thoughts, emotions and behaviour to give you a pretty honest view of that.

I’ve talked about PTSD before.  I’ve shared some of the flashbacks and intrusive memories that I have suffered since my daughter was diagnosed with Kawasaki Disease last June.  I’ve told you that sometimes, when I look at Freya for long enough, her face morphs into the sad, scared, sick little baby that pleaded with me with her eyes from a hospital cot.  I was embarrassed by the diagnosis.  You associate it with war veterans.  But, it does happen to people who have suffered a critical illness, or in my case watched a child suffer.  There’s a big difference between a flashback and a bad memory.  We all have bad memories from time to time; a smell that reminds us of our first love, a song that can recall memories of a lost loved one, events that remind you of the time you were badly beaten up at school by that one girl in your GCSE year (https://bluemama.co.uk/2014/12/01/one-girl-one-day/).  Bad memories I can deal with.  They are long-term memories, and as such when recalled the emotion doesn’t hit you with the same intensity that it did at the time.

A flashback puts you right back in the original situation, and all the components of that memory – the emotions, the sounds, the smells, the physical surroundings – are replicated with all the intensity of the event itself.  Apparently when these happen, I have to tell my inner child, the victim, that it is ok for them to remember, but that I will help them through it.  I know, right?!  But joking aside, the tips I have been given have worked, and I haven’t had what I would call a ‘real’ flashback for a little while now.  Removing the spare cot from our room was a stellar move and my brain no longer keeps me up until the wee hours to avoid going to bed.  Cognitive Behavioural Therapy that specifically focusses on trauma, exercises ‘mindfulness’ to overcome that trauma by training your brain to accept the thought, but to prevent it from lingering by focussing your attention on how the thoughts made you feel, rather than the memory itself.  I’m sure I’ve just understated the treatment completely, but that’s it in layman’s terms.  And it actually seems to be working.  We haven’t yet worked through the key reason for my condition (Freya’s illness), instead we are working through three other life events which evoke a particularly poignant memory (good or bad).  The idea being that you practice the techniques on some more dormant memories, so that by the time you reach the biggie, you’re ready for a fight.  Today we practised the technique on the memory of the death of my grandfather.  I’ve been told not to reflect on that outside of the sessions, so I shall leave that there.

The depression is different again, and kind of fills in the spaces between the PTSD symptoms.  It’s a general feeling of low mood, varying in intensity depending on the day, the hour, the situation.  I can’t describe it any better than it being like a dark cloud permanently looming above my head, casting a shadow over me.  The good thing about clouds, is that sometimes they shift a little in the breeze.  A strong wind can brush them off completely for a time.  And the sun sometimes manages to break through and cast a beacon of light upon my path.  In some ways, I have learned to control the weather.  In the PND years, I couldn’t have done that.  But as I have said, I am more self-aware now.  I know that even if all I want to do it bury my head under that duvet, I have to choose another way.  Having kids kind of forces my hand.  With my firstborn, I didn’t have to be anywhere, so it was far too easy to stay in my pyjamas all day and wallow in sorrow.  I know some victims of mental illness find themselves in that place, regardless of their personal circumstances.  Luckily, this hasn’t taken all of me, and I do function on a pretty normal level most of the time.

How does depression affect me?  Well, I go a bit into myself sometimes.  I think a lot.  I cry a lot, not always for any reason.  I question my capabilities as a mother, as a wife, as a person generally.  I lose sight of my self-worth.  I retreat from people when I feel hard done to, and the depression makes sure that the further I retreat, the higher the wall becomes.  I have automatic negative thoughts (‘Ant’ – you might have met her in previous blogs.  She looks a little bit like me, but a lot like that girl that beat me up in my GCSE year.  Pretty girl, likes to stick the boot in now and again).  My thoughts tend towards the catastrophic.  And I get a bit hung up on signs.  Numbers, magpies, white feathers, a necklace breaking; all signs of impending doom for me or my relationships.  On a good day, it doesn’t affect me at all.  No more than a grey cloud hovering above, threatening rain, but not quite managing to defeat the sunshine.  I’m stronger than I think I am.

For a more insightful description of how depression feels, I don’t think there is anyone that has done it better than The Black Dog Institute when they put out this video on You Tube (https://www.youtube.com/watch?v=XiCrniLQGY).

And lastly there’s that little treasure, anxiety.  That’s a whole new ball game.  Aside from the nasty flashbacks, I have found the anxiety the most debilitating and damaging of all.  The Mind website provides a pretty comprehensive list of the symptoms of anxiety, so I thought sharing that was as good as any list I could provide (http://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/#.VsTInsexrjI)

Physical sensations: Psychological sensations:
  • nausea (feeling sick)
  • tense muscles and headaches
  • pins and needles
  • feeling light headed or dizzy
  • faster breathing
  • sweating or hot flushes
  • a fast, thumping or irregular heart beat
  • raised blood pressure
  • difficulty sleeping
  • needing the toilet more frequently, or less frequently
  • churning in the pit of your stomach
  • experiencing panic attacks
  • feeling tense, nervous and on edge
  • having a sense of dread, or fearing the worst
  • feeling like the world is speeding up or slowing down
  • feeling like other people can see you’re anxious and are looking at you
  • feeling your mind is really busy with thoughts
  • dwelling on negative experiences, or thinking over a situation again and again (this is called rumination)
  • feeling restless and not being able to concentrate
  • feeling numb

That’s how I feel a lot of the time.  Add to that the fact that I have developed a hypersensitivity to certain sounds, which make me want to explode (want to? You do Jo!) and I’m pretty much a coiled spring of anxious tension from dawn ’til dusk.  You can imagine how fun it must be for my husband these days!

But.  And it’s a big but. It’s not all bad.  I am that girl in the photograph.  I do smile, and quite often that smile manages to reach all the way up to my eyes.  I want to do things, see people, have fun.  I like to escape the confines of my daily life sometimes.  I want to be happy.  I don’t want to cry, or shout, or feel inadequate.    I want my family to love me, not to worry about me or look at me with judgement when I fly off the handle for what seems like no reason at all to them.  I have things I want to achieve, places I want to go.  For now, I am giving the counselling route a try.  If things don’t get any easier anytime soon, I will consider medication.

No journey with mental illness is easy.  Some might be easier than others, and I am open to treatment and very self-aware.  I know that right now I have feelings that could result in life-altering decisions.  I also know that those feelings might not be real, and until the fog lifts I will hold those thoughts.  Thoughts are not facts.

To anyone who has ever suffered, or is suffering still, I hope you find your own way to mend.  There is help, but it can often be hard to ask for it, sometimes even harder to find.  I talk candidly about myself and my experiences now.  I haven’t always.  When I started this blog I was too afraid to make it public for fear of judgement.  But this last year has taught me some lessons about not holding back, so now my heart is firmly on my sleeve for all to see.  Judge, don’t judge.  It’s not important to me anymore.  And if I ever offend with a too glib portrayal of mental illness, please know that a) I only describe what mental illness means to me, how it has affected me, and b) that humour has often been my way of handling the most negative of situations.

One in four people will suffer with a form of mental illness in any given year.  Take a look round you, at your family, your friends.  If it’s not you, it could be one of them.  Be kind, always, because you never know what personal struggles other people may be facing, even when they seem to be wearing a smile.

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Follow me on Facebook at www.facebook.com/bluemamablog and if you are interested in learning more about Freya’s Story and Kawasaki Disease, you can visit www.facebook.com/freyasstory 🙂

 

 

All I need

Posted on by Bluemama

You are all I need Peanut.  Sure, there are other people that make me happy, but no-one has the power to make the sun shine through the rain like you do.  For me, you have become a symbol of strength and love, and a living example to all of us that we really should grab this life with everything we’ve got, because there really are no guarantees.

Quite often that makes me sad.  I can’t help but wonder what your future holds; sometimes I wish I had a crystal ball so I could see your life unfold and be happy that this thing isn’t going to get you one day.  But I guess there’s no fun in that is there?  So I have to hold on to hope.

You have a cardiology appointment next week, sweetheart.  I always find myself a little more melancholy than normal, and a bit more anxious that I usually am, as the date approaches.  The problem with me, is that I like to be in control.  And this most definitely does not allow for me to have control.  None.  I don’t expect the appointment to give me any surprises.  Not bad ones anyway.  Your condition, if it gets worse, is unlikely to get worse any time soon.  We may even be blessed with improvement, but let’s not jinx things, eh?  The best I can hope for is no change.  And even then, it’s a limited view.  What’s frightening is that we only know what we can see.  An echocardiogram can only show us about 3mm into your arteries.  Beyond that you need an MRI scan, but they have no plans to go looking yet.  I wonder why?  Maybe because you are so young, it would be preferable not to sedate you. I have to remind myself that the only reason you didn’t need to be sedated for your last MRI was because you were too sick to care.

I think, to all intents and purposes, we could be bold enough to say you are out of the woods for now.  Can I say that?  Should I say that?  The scientific part of my brain keeps telling me that the only thing that can cause you any problems is biology; my words will not be the cause.  Thoughts are not facts.  For now, I have two questions for the Cardiologist.  “What will I need to do throughout her life to protect her heart?”  and “Remember when you took me in a room and told me about the risk of a coronary aneurysm rupture, and how you told me that you could do nothing to prevent it, and that if it happened she would be gone?  Well, do you think that is a risk now?” Let’s see if we can get some questions answered next week shall we? So you will need to behave yourself.  You won’t! You’ve been trying to take over the echo since all this started; next week you are going to be rolling, and grabbing, and trying to crawl off the table!  Things just got interesting!

So it’s just dawned on me that I never had one of those baby books, the kind where you write all the milestones down.  To be honest, I had books with your brother and sister, but the novelty wore off a few weeks in and there are two half-finished (half-started?) baby record books gathering dust in the loft.  And then I thought I could do it here.  So let’s see, what can I tell you about you….

You have been sitting up for a while now.  For some time it seemed like you were never going to get there, but you did.  Your preferred mode of transport continues to be the ‘commando crawl‘ – you’d be fantastic on one of those military assault courses! And you’re fast Peanut, real fast! When you spot something you want, you can be at your target in a nanosecond.  I have to be on full alert – generally the thing you spot is something you shouldn’t have and everything goes in your mouth.  When I thought I’d cleaned up all the pine needles from the Christmas tree, you still somehow manage to find them.  And eat them.

You have a real sense of fun.  You are going to be like your brother; full of mischief.  You are always doing something, always busy.  You’ve just started getting up on your knees too, which means more of the world is within your reach, and I can see how exciting that is for you.  You are always in my kitchen cupboards, always pulling books off the bookshelves, always finding the one thing amongst all the other things that you are not allowed to have.  You are going to keep me busy!

You have a few words in your vocabulary.  “Daddy” has been a favourite for some time.  There’s something very cruel about ‘dadadadada’ being the easiest sound for a baby to make.  You’ve said a clear as a bell “Mama” once.  It was magic.  You’ve not said it since.  Your absolute favourite is “Uh-oh”, which was remarkable when you first said it because it alerted me to the fact that you had dropped something, like that time you dropped your toy in Marks and Spencer and I wondered why you wouldn’t stop saying “Uh-oh”.  Now it seems that “Uh-oh” is a catchall word for everything.  I think it means you are hungry, thirsty, tired, sad, angry, happy…it’s a one word fits all kind of thing!  I’ve been able to make out a few other discernible words; doggy, dinner, bye-bye.  You know your sister.  She’s Eliza.  That’s “a-la-la” to you.

And you laugh sweetheart, you really laugh.  Just a couple of weeks ago, we needed to tickle you to incite a giggle.  Now you laugh at everything and everyone! You laugh at trees and flowers, birds and cats, me, your dinner, everything! Just the sight of those tickling fingers coming your way and you are reduced to an uncontrollable cackle.  You see joy in most things, and you are slowly teaching me to do the same.

But, it isn’t all hearts and flowers my little cherub.  There is one thing that is currently driving me crazy, and that’s the scream! You have developed a squeal that would rival any dolphin, and brings half the neighbourhood’s dogs to our doorstep.  I think, roughly translated, it means “Hey, you, why are you not giving me your 100% total undivided attention right at this very second and every second after it?” but I don’t talk baby, so who knows if I’ve got that right.  Most mums could probably ignore it.  Unfortunately, I suffer with anxiety, and have real trouble with noise, so that little scream goes right through me and rings in my ears.  Let’s hope it passes soon (either the screaming or the anxiety – both would be nice).

You do still hold the title of ‘Epic Sleeper’, and if I didn’t know you were real I would start to wonder if you were some kind of clockwork toy.  I’ve looked for the key, I can’t find one.  The daylight hours are short with you Pickle.  You wake around 7am (sometimes later), nap for anything up to 2 hours at about 10am, and from 4pm to 6pm your constant squawking acts as a reminder that it is nearly bedtime.  6pm comes, you’re milk-drunk and sleepy and off you pop to bed, and we don’t hear a peep from you ’til morning.  So, on a 2-hour-nap day, I figure we get about 9 hours of you.  The thought of going back to work and that becoming 1 hour is unfathomable.

I don’t know if you will ever remember this time in your life.  I hope you don’t. Your first year has been blighted with illness, fear, hospitals, and me.  And when I say me, I don’t mean that I’m not a good mum to you.   I shout sometimes because the anxiety builds up inside my like gas in a pop bottle, and sometimes your brother or your sister, or a noise, or a setback, shakes me up just a little too much and the lid blows off.  And I am often sad.  I cry.  A lot.  I can’t tell you that I love you without tears pricking my eyes; I hope you don’t grow up associating love with sadness.  Sometimes when I look at you for too long, your face becomes the face of that tiny baby pleading with me with her eyes.  I don’t sleep that well either, because I’m always straining to hear you breathing on the monitor.  When I wake, it feels like I have slept holding my breath, and I am frozen in my bed until I hear a shuffle or a snuffle from you.  I am sure all this will pass, and I am getting help for it so that I can get this under control before you do start to notice that mummy is always sad.

It is lucky, then, that I adore you.  You are a pleasure to be around (which is lucky indeed, as you are the only person I see very much of!).  If  you were a different baby, I reckon I’d have cracked up by now.   But you, my dearest Freya, are the light in the darkest of days.  Sometimes, you look at me with those ocean deep eyes, and it’s like your very soul is speaking to me; “I’m gonna be ok mummy.”  

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Please feel free to like, share or comment on my posts. You can also learn about Freya’s journey with Kawasaki Disease at http://www.facebook.com/freyasstory

An Exercise in Mindfulness

Posted on by Bluemama
mindfulness
ˈmʌɪn(d)f(ʊ)lnəs/
noun
  1.  the quality or state of being conscious or aware of something.
  2. a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

(Source:Google)

The thing is with this kind of stuff is that it all sounds a bit new age, off in a forest finding yourself whilst hugging a tree, doesn’t it?  Well it does to me anyway.  But I was given my homework at the last session (my first session) so I thought I should play along if I really wanted to beat this thing.  The counsellor gave me a pile of papers last week, and had ticked a number of the exercises that she wanted me to practice.  I am undergoing Cognitive Behavioural Therapy to deal with trauma; I apparently have post-traumatic stress disorder (PTSD).  I say apparently, because to be honest I’m pretty embarrassed with the diagnosis.  I mean, you hear the word PTSD and are immediately met with images of soldiers on the frontline in Afghanistan, or firefighters coming out of the Twin Towers.  I have never once in my life imagined a normal mum, with a normal life, who can’t shake off the events of the last year when her daughter was diagnosed with a serious illness.   And that is who I am (except maybe less stress on the ‘normal’).

Anyway, I shared an image on my social media pages that I created last week (my brain), designed to illustrate what goes on in the mind when it’s owner has a bit of a tough time handling a traumatic event.  Although I don’t think I am worthy of the PTSD diagnosis, I do understand what is going on up there at the minute and it helped me to show it in a diagram.  The long and short of it (no pun intended) is that the events of last year have become too big for my brain to process.  Those short-term memories should have made their way down into the long-term memory by now, but they’ve got themselves stuck.  And because they are stuck in my short-term memory, they are there, all the time; a constant reminder of those dark, dark days.  Sometimes they are that there, that it feels like they are here.   Now let me tell you there is a massive difference between recalling a painful memory, and intrusive memories and flashbacks.  I was ‘blessed’ with a pretty remarkable memory, particularly for words.  I can recite poetry that I’ve not read in years, I can recall the exact way I felt when I was thirteen years old and my Grandad passed away, and yes dear Husband, I can remember what was said in that argument in 1998.  I don’t seem to be able to let go of things that have evoked a strong emotional response.  Not a bad thing, unless you feel most things with the intensity of a Tsunami, in which case you find yourself with a hell of a lot of stuff up there.  But I digress slightly.

I’d say the main difference between a memory and a flashback is the intensity of the emotional response.  Of course we all feel a little sad when we recall a loss, or a particularly difficult time in our lives.  But when those events have been properly processed, they evoke just a small amount of the emotion originally felt.  When those events haven’t been correctly processed because the brain just couldn’t manage the overwhelming task, they are recalled with all the strength of emotion that was felt the moment that it happened.  I think it might help (me more than anyone, perhaps) if I tell you what kind of intrusive thoughts and/or flashbacks I am talking about.

Intrusive Thoughts

These vary from images that flash in front of my eyes when I am least expecting it (though not to be confused with a ‘flashback’ – you’ll see why later), to a little Voice of Doom in my head that likes to play Devil’s advocate with the ever-so-slightly-smaller Voice of Hope.  You might have heard me talk about ‘Ant‘ before (Automatic Negative Thoughts)?  Well she’s a whole other kettle of fish!  I don’t seem to hear much from her these days, but I often wonder if she is pulling the strings of the Voice of Doom.  Ok, so now I sound like I have multiple personality disorder, and whilst I do not profess to be particularly knowledgeable on that subject, I can confidently say that I do not! These parts of the brain exist in all of us, I just like to give them a name as we are so well acquainted.

So, let me give you a few examples.  

If you are old enough (that is, as old as me) then you might remember that 1980’s toy, the ViewMaster?  Hang on, I’ll find you a pic…Unknown.jpg…There you go.  When I close my eyes, it’s like an automatic ViewMaster, presenting snapshot after snapshot of memories.  Bad memories.  Mostly it’s Freya; lying in her hospital cot pleading at me with her eyes, gasping for breath, disappearing into the MRI tunnel or her eyes rolling into the back of her head as she was forced into sleep on an operating table.  The worst snapshot is the one of her lifeless, limp little body at the moment that I realised this was going to be bad.

Sometimes, it’s not Freya, but me that I see.  Like watching my own life through some kind of out of body experience.  That’s what happened when I went to bed last night.  Image after image of all the moments when I felt most frightened and most vulnerable during my 6-week incarceration courtesy of 3 of Yorkshire’s finest hospitals.  The moment the Cardiologist took me to a room and told me she couldn’t do anything to save Freya from the worst of risks.  The moment I tried to go back to the HDU, to my little girl, and slid down the wall because I couldn’t bear to take one more look at her if I was going to have to lose her.  The times when visiting hours were over and my lonely evenings began.  The long walk down those LGI corridors at 3am when my body betrayed my resolve to stay awake by Freya’s bedside all night (they wouldn’t let me sleep on the ward for that period).  And standing in the hospital Chapel doors, not really knowing why, but writing a prayer all-the-same; “Dear God, prove them wrong.”

Those are some of the things that I see when I close my eyes.  So I don’t.  I stay awake for as long as I can possibly keep my eyes open.  Partly because that means there are less hours for Freya to sleep ‘unsupervised’, partly because of what lies behind closed lids.

And then there are the thoughts.  The what ifs, buts and maybes.  I’ll be brushing Freya’s hair, and wonder whether she will have her brother’s curls…“What if you never see it?”  I’ll be listening to her gurgle and babble away in that special little language of hers and think about how I can’t wait to be able to chat with her…“As long as nothing bad happens before then.”  I swat those thoughts away like pesky flies, but the sneering tone lingers.  Every thought I have about the future is met with a voice warning me not to tempt fate.

Flashbacks

These are less common.  It’s hard to tell the difference between a flashback and an intrusive thought/memory sometimes.  I have mini ‘flashphoto’ moments at times.  I don’t know if you have ever seen that movie with Brad Pitt, Se7en?  <<Spoiler Alert>> There’s a scene right near the end when he opens the box and just for a split second you see an image of his wife’s head in the box.  It’s that quick, you don’t even know if you really saw it, and it’s only when you’ve seen it a few times that you start to expect it.  Well that happens to me with images of Freya, except sometimes the image sharpens until it has altered reality.  Just yesterday, I looked down at her little post-bath face framed by a fluffy white towel and was immediately taken back to the moment I first held her in my arms, wrapped in a hospital issue blanket.  Without any warning, a rush of sadness overwhelmed me and the tears that are always there at the brink started to fall.

I think for me, the differentiation between the intrusions and a flashback, is in both the intensity and their ability to alter reality.  The intrusive images are played to me one by one, like you would see with every click of that little red ViewMaster.  They are disturbing, upsetting and unnerving.  But I can shake my head and try to make them go away.  The flashbacks are different.  Whether it be seeing Freya’s face change right in front of my eyes to the point that I am again holding my sick child in my arms, to reliving a particular event, they steal into my life without warning and manage to transport me back in time to when it was all very real and very raw.  When the ‘real’ flashbacks happen, I am cold, rooted to the spot, I tremble, I sweat, my chest tightens and I can’t breathe.  And I cry, I cry a lot.

There have been a number of triggers for the ‘real’ flashbacks.  Mainly smells and sounds that take me right back to those weeks in the hospital.  The phone rings at the wrong time and it’s the monitors beeping incessantly to tell the nurses the IV has stopped running, again.  Freya’s bedtime toy starts to play it’s little tune in the middle of the night, and we’re right back there, in that cubicle, her eyes staring blankly at the glowing seahorse that soothes her to sleep.  I can’t sing a certain song, or hear certain pieces of music without being stopped in my tracks as my surroundings and environment change around me.  Having Freya’s old cot by the side of my bed is a major trigger.  The silhouette of the bars in the dim light of our bedroom at night; I find myself constantly checking the baby that isn’t there (she is in her own room now).

I feel like I am constantly being hijacked by my fears and my memories.  They don’t want to let me go, they don’t want me to let go of them.  And as warped as it might sound, I’m not sure if I want to let go of them… 

Letting Go

What does that actually mean?  You know what I am most scared of?  I’m scared of beating this, and forgetting.  Scared I’ll stop appreciating what we all went through and begin to take life for granted.  Scared that if I forget how it felt, I won’t fight to make sure Freya has the best life she can possibly have; that we all will.  And because I feel like my whole self has been defined by the events of the last year, I am scared that if I let it go completely I will not know who I am, and I will be lost.

But I do know that I have to let this go.  I have to open my mind to the treatment I am being offered.  I have to shift these things from my short-term memory down into the long, where they will never be forgotten, but where they will cease to have control over my life.

Treatment

Today I started the treatment in earnest.  During the session, I had to undertake a Mindfulness of Emotions exercise.  I was already crying before we started; I had been asked to think of 5 events in my life that had had either a positive or negative emotional effect upon me.  Always the over-thinker, I struggled to think of them and my mind went blank.  I thought of a couple of things – Grandad dying (bad), Eliza’s birth (bad), Finlay’s birth (good)… Nothing else would come, absolute blank.  Obviously the situation with Freya goes in there at number 5, but we had to agree to leave number 4 for next time.  I think the plan is that you practice the techniques whilst processing some old memories/events so that by the time you reach the biggie you are an expert in handling thoughts and emotions.  Something like that.

So, I sat in my chair opposite the therapist, and she handed me some paper towels to wipe my eyes (I have no idea why they don’t realise they might need tissues for these things!).  She told me to close my eyes, lay my feet flat on the floor and sit straight with my hands on my lap.  All I had to do was to sit still, feel my body in the chair, and when a thought came along I was to accept the emotion that it brought with it, and dismiss the thought. What actually happened was a full blown panic attack.  I felt the anxiety building as I sat there facing the counsellor with my eyes shut (did she not hear that I have an issue with that?!)  I was conscious that my feet wouldn’t stay still, and I was wringing the tissue in my hands.  Every inch of me wanted to get up and run, and it was one of the most uncomfortable things I have ever done.  When I stopped breathing, and then started gasping for breath (I know! Idiot!!) I had to open my eyes.  The counsellor had a chat with me about what had happened, and she said that I was trying to run from what I might see with my eyes closed, and we should start again.  This time I would face the window, so I might feel under less scrutiny.

The remaining 15 minutes of the exercise were tougher than I imagined.  But in that state of quiet awareness, I could actually see the thoughts arriving and feel the physical effects that those thoughts were having on my whole body.  It was intense, and surprising.  Sitting there in that state, I was acutely aware of how my body reacted to the thoughts as they intruded.  My toes were actually curling, my whole body squirmed, and my breathing became more rapid.  And then, of course there were the tears, but I never had that much of an issue producing those.  Sitting there allowing myself to feel the emotions whilst trying really hard to tell the thoughts to bugger off, I felt like one of those shove ha’penny machines at the amusement park.  A mind full of thoughts spilling over into my consciousness, causing the emotions to come rushing out in waves.  Towards the end I felt bruised.  But I did notice that within the last few minutes I began to notice the sounds around me, and no longer noticed the thoughts.  Cars going by the window, the scrape of a chair from the floor above, the buzzing of the PC on the desktop.  And as I noticed those noises, and the noises in my head began to quiet themselves, I felt my shoulders drop and I was still.

My homework is to practice that every day for at least 15 minutes.  As I am not sleeping, and am delaying bedtime, the counsellor suggested that I do the exercise in bed.  It’s like training your brain to accept thoughts without entertaining them, to feel the emotion that those thoughts evoke, but to focus on something else so that those emotions can be let go.  Right now, my thoughts are being overindulged.  They need putting on the naughty step, and I need to stop allowing them to dictate how I am going to live my life.

 

Wish me luck.

How do I feel?

Posted on by Bluemama

“So, what brings you to us today?”

There it is, the dreaded question.  The question that you know is going to be the first one they ask, so you rehearse it over and over while you’re sat in the waiting room.  The question that, when it actually comes out of the mouth of a psychotherapist, is most often met with a blank silence, and lots of tears.  It’s a funny question to ask I think (funny odd, not funny haha). I mean, where on earth do you start?  The relief of actually being in front of someone who is not only qualified to ask these questions, but might actually know how to help you deal with the answers, has always resulted in me falling apart right in front of them.  The same can be said of this morning.

I felt sick to my stomach this morning, and a couple of times I thought I might actually run.  But then they called my name, so I had to see it through.  These things can go many ways; a lot depends on who the person on the other side of the door is.  I’ve been known to go for help (yes, I’ve been here before, well kind of – I’ll explain later), and clam up the moment they’ve opened their mouth. “Yes, I’m fine.  In fact, I’m not really sure why I’m here.  I’ve been feeling much better lately…”  Mostly they are the kinds of people that are experienced in getting people to talk, and are warm and welcoming, and I spill the beans before my backside has even met the chair.

Today was like that.  I was introduced to a trainee psychotherapist who would be responsible for carrying out my assessment.  i did feel immediately at ease with both her and the psychotherapist present and was able to articulate how I felt to a degree.  I answered that question, after a pause and a moment to catch my breath and stem the tears, that I was struggling to come to terms with a situation that I found myself in.  I explained that I felt an incredible sense of sadness that our child was struck by this devastating illness, after just seven weeks of normal.  I explained that I felt afraid that I loved Freya too much, and that every time I felt positive about the prognosis I was overwhelmed by the fear that the rug could be pulled out from under my feet.  I explained that I felt angry at the world for not understanding how much this has impacted on our lives, and that I had considered taking myself and my daughter far enough away from all of this to convince me that it never happened.

After a considerable length of time where I switched between a mother unable to speak through the tears as I recounted some of the experiences that you will have read about if you follow this blog or the Facebook page, to a sensible, level-headed woman who could describe the illness and its effects with the knowledge of a medical professional, a conclusion was reached. I am not depressed.  I knew that.  I have suffered with depression in many forms in the last 11 years, and I knew that what I was feeling was not the same.  It’s one of the reasons why I have struggled on alone for so long; I didn’t have an appropriate label for what I was experiencing.  I don’t display the classic symptoms of someone with depression.  I enjoy my life and know that I have a lot to live for.  I don’t avoid people or situations, in fact I look forward to human interaction and an opportunity to escape, let my hair down, mingle with my peers.  I took part in a hen party this weekend, which I thoroughly enjoyed (apart from the bit where I cried myself to sleep looking at a picture of my precious Peanut).  Some of the old familiar thoughts have been creeping in; I text her ages ago, why hasn’t she responded? She has probably had enough of me/isn’t interested/doesn’t care/doesn’t want to be friends with me anymore.  But I’ve managed to ‘have a word with myself’ and been rewarded by a late response and an explanation that allayed my fears, and reaffirmed my common sense.  I get up every morning, shower, make myself look presentable (cue the school mums saying “Seriously! She thinks that is presentable!!”), I have my nails done, I buy nice clothes. I am still interested in my outward appearance, and take care of myself.

However, I experience anxiety like I have never known before.  Full blown panic attacks where I feel like I am being strangled, and my body wants to sink into a puddle on the floor.  Real, deep sadness that takes my breath away.  Intrusive thoughts that threaten every moment of happiness that I dare myself to have.  Confusion, anger, hatred, irritation.  I shout at my husband and the kids like an old fish wife at times; I have no patience.  I want to lock myself in a room for a week, or more, and shout, kick, scream, punch some walls; let the emotion of the last 6 months escape from me in one tremendous fight against myself and the world.

See, I’ve written my blog.  Every time I have feelings I need to share, I take to my Mac and write.  I don’t think about it, my words are not considered.  I sit and write whatever my fingers choose to type, and Prosecco-fuelled as I am now, it just comes out, unconsidered, but raw and real.  I thought it would help, that writing would be therapy.  It has a little, but not a lot.  I feel like the words have to be spoken, aloud, to someone who hasn’t shared this journey with me, to someone who hasn’t had their own journey to contend with, to someone who doesn’t have an opinion on what I should think or feel.  To someone who doesn’t wonder what all the fuss is about (you know who you are!).  And I do not want the rest of my life or hers to be defined by the bastard that is Kawasaki Disease.  It has already taken enough from us.  And right now, Freya doesn’t notice that there are tears behind every smile, but it won’t be long before she does notice.  “Why are you sad, Mummy?” These are not words I ever want to hear come from that sweet little mouth.  But they will, if I don’t take control.  And I don’t want Freya to grow up scared of this world she lives in, scared of her own strength, frightened to fall or take chances.  I want her to live, and love life.  How can she do that if I put her to bed every night afraid that she won’t wake up the next morning?

The psychotherapist admitted that the low intensity treatment they offer is not what I need.  It is likely that I am suffering from post-traumatic stress disorder (PTSD) and am being referred for appropriate treatment.  I have a number of choices ahead of me.  I need to choose the treatment that will benefit me and my family the most.  I can be treated for PTSD with cognitive behavioural therapy (CBT) and eye movement desensitisation and reprocessing (EMDR), which are standard treatments.  Or I can have talking therapy that will allow me to say aloud all the things I have kept inside of me for these past few months.  Both would benefit me.  I think the most important thing for me to deal with right now are the symptoms of PTSD.  I need to rid myself of the anxiety, and be able to walk into our local hospital without it having a physical and debilitating effect on me.  I need to get some sleep; stop staying up until 3am to limit the number of hours that I am not alert to Freya or aware of her nearness.  And I need to erase the flashbacks, because those are the most distressing of all.  I have lived through these things once, re-living them every day against my will is making me unwell.  I will never forget some of those moments, nor do I want to; those moments are what will ensure I never take a moment with Freya for granted.  But I don’t want to see them played out in my mind like a DVD on a loop every day of my life.  Those memories are stopping me from moving on, and from seeing the beauty of life that is in front of me.  And I want to move on more than anything.

Our broken hearts

Posted on by Bluemama

My dearest Freya

I haven’t written to you in a while, your journey has been continued through my blog and I mostly write to whoever is out there reading your story.  But today I found myself missing my imagined conversations with you and felt compelled to write.

I spend most of every day with you, my darling, and every day my love for you grows more and more.  You are an inspiration to me, and you leave me awestruck.  I cannot look at you without marvelling at how far you have come in such a short time.  On Saturday you will be 6 months old.  Just 6 months! It is hard to comprehend what you have been through, and I have to pinch myself to believe that you are still here.  And you are still here, despite this nasty disease’s best attempts to reach a less favourable outcome.  But despite the fact that you are doing so incredibly well, I cannot help the anxiety I feel for the eternity of fog that lies before us.

I read stories about KD all the time.  Every day I see comments from parents of children who have suffered, or are still suffering at the hands of this disease.  I feel the fear in their words.  Sometimes, like today, there will be a post from a parent who wants to share the news that their child, so many years after KD, has had a clear echo, or is surviving against the odds and sticking two fingers up at Kawasaki Disease.  Those stories are great, but they also act as a reminder that this never really leaves you.  There are daily posts from parents airing their concerns about the perceived after-effects of KD; behavioural problems, anxiety, joint-pain to mention just a few.  Reading those comments, I wonder what will become of you?  I don’t know if it is a blessing or a curse that you are so young?  I will never know how KD shaped your personality because you didn’t have one before it got you.  What I do know, is that it feels like I will have such a long time to wait to see the real long-term effects of the disease on your body and mind. I can be thankful that you shouldn’t feel any anxiety as a result of your illness. You have no idea how close you came to leaving us; you have already forgotten what KD did to you.  I don’t think I will ever forget.

I want to though.  I want to be able to live our lives without that dark cloud looming above our heads, threatening rain.  I want to be able to flick the switch that will stop the last few months playing over and over in my mind like a DVD on repeat.  I want to look at you and see your sweet, beautiful face looking back at me, not the lost little face that is etched in my memory.  I want to muse about the future without the niggling doubt that there might not be one.  And that’s not because I think you are going to die, because I know that you are doing really well sweetheart.  It’s just that I dare not say it out loud in case I jinx it and set in motion a whole new twist of fate.  It’s true that there is nothing certain about life, but mostly people go through life taking it for granted that it will last forever, or at least for a very long time.  Of course, a life can be taken at any time, and it wasn’t in anyone’s plan for this disease to take you when it had its strongest chance.  I had never thought about death as a real possibility before.  Now I think about it all the time.

I know it will get better.  I know that every day we move further away from the diagnosis is a day closer to healing.  And I am sure when you have had your next follow-up appointments in November I will gain some more comfort for our journey.  It seems like such a long time to wait, and I wish there were a way I could see right through your little chest into that heart of yours.  That’s the cruellest  thing about this disease.  On the outside you look like any other baby; happy and healthy, with little rolls of fat on those chubby thighs of yours, and a rosy flush to your cheeks. You can do everything you should be able to; you can roll over onto your front (mostly when I’m not watching, cheeky lady), and you chatter away all the time (this has most recently developed into a high-pitched scream whenever I am not paying you any attention!)  But in there, something is happening.  Probably good things, maybe nothing, but something.  It is completely out of my control, and is a constant threat and source of anxiety for me.

One day we will sit and chat about all of this, and you will laugh and tell me how silly I was to worry (don’t tempt fate, don’t tempt fate).  Oh sweetheart, I am sorry for writing in such a negative way.  I ought to be telling you how strong you are, and how great your life is going to be.

I went to see my doctor today.  You came too.  I was hoping you would stay asleep so I could keep you in the car seat with the rain cover on, acting like some kind of immunity bubble.  I hated that you were there with me, in that place full of germs, but I felt that if I took you with me maybe the doctor would fall in love with you and advocate for you as much as I do.  I want them to agree to prescribe your aspirin so that I don’t have to keep facing the battle at the end of every packet.  I felt like if they saw you, there would be a more personal connection and they might fight harder.  The doctor appeared unmoved.  I told the Doctor that I believe I may be suffering from post-traumatic stress disorder, and that as time goes on I am noticing some of the signs of  an old ‘friend’ that I thought I’d managed to banish from my life.  He asked what I had in mind, and suggested antidepressants.  I’ve declined that for now, and asked to be referred for talking therapy.

I have so much hurt inside that I could lock myself in a padded room and just scream until there is nothing left.  I am not what most people would describe as depressed (but then, how many people get that right anyway?!)  I function pretty normally.  I get up in the morning, shower and make myself presentable (in my humble opinion!)  I change you, dress you and feed you, and I run around after your brother to make sure he is ready on time for the school run.  I smile and chat to the other mums in the playground, and I genuinely enjoy seeing other people.  I don’t cry all the time, but I cry a lot.  It used to be that I just cried when I thought about all of this.  Now I cry over a lot of other things too; like things I see or hear on the news.  Yesterday, an 11-year-old boy in America shot an 8-year-old girl dead.  That made me cry.  I’ve started chewing my fingers again.  That’s a sign of anxiety for me.  And I’m angry and sad, and irritable and irrational all at the same time, which is exhausting.

It’s like my insides are all tied up in knots, and I feel like I am constantly holding my breath.  I thought that writing about all of this would make it all better; that in some way it would be like self-help.  It hasn’t worked out quite how I planned.  I text my kawabuddy pretty much every day, and that makes me feel better because I know she understands how this feels.  And yesterday we went to Nottingham to meet a lady who founded the Kawasaki Support Group here in the UK, and she still remembers how this felt for her 20 years ago.  I think everyone else probably thinks I should just get over it and move on; that you are better now.  You are here.  I know I should too, but this disease is full of surprises and it’s like I am waiting for its next move.

The fact is that somewhere in between the 31st May and the 12th June my heart broke.  I can’t say when the damage actually happened, perhaps around the same time that it happened to yours.  What I do know is that, like yours, it is slowly repairing.  But it remains broken.  I have sought help to heal it, but accept that it may never heal completely and there will always be some small part that Kawasaki’s killed; the part that believed that I could protect you from anything.

I loved you from the very second you were born into arms that shook with fear that they might hold you too tight.  I love you more today than I did yesterday, and I shall love you even more tomorrow.  Your smile will help to mend our broken hearts.

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The Reality of Kawasaki Disease

Posted on by Bluemama

When the phone rang at around 9:30pm last night and my mother-in-law was on the end of the line telling me to tune into ITV because an episode of Doc Martin was showing a case of Kawasaki Disease, my stomach did a little somersault.  A prime-time TV programme mentioning KD? I could hardly believe it. I switched over a little too late so set the programme to record on ITV+1.  As more and more comments and messages came into the various Kawasaki support group pages on Social Media sites, including Freya’s Story, the adrenalin was pumping.  You could almost feel a collective buzz as parents of children who have suffered at the hands of Kawasaki’s from all over the UK tuned in to witness KD getting a voice.

I couldn’t help but feel a sense of pride in being part of this campaign for raised awareness.  I cannot claim credit for the inclusion in this TV programme, or the coverage in The Daily Mirror last week, but I would like to think that somewhere along the way there will be a link with Freya’s Story and the small bit I have done to help raise Kawasaki’s profile.  I can claim credit of over 300 signatures on the Kawasaki Support Group UK petition (change.org/kawasaki), and I know that a lot of the 500+ people who now follow Freya’s Story on Facebook and Twitter will not have heard about Kawasaki Disease before;

“This evenings episode of Doc Martin includes a case of Kawasaki disease, wouldn’t have known what it was without this page and good coverage to help raise awareness.” (Posted by Facebook user on http://www.facebook.co/freyasstory)

“I saw the Mirror, I have read nearly all of Freya’s story, I have cried for you and smiled at the lovely pictures. It’s amazing though what you have done, I knew you were strong and raising the awareness is fantastic.” (Friend, and follower of Freya’s Story on Facebook)

But I’m not doing this for praise or thanks.  I’m doing it because I don’t want another parent to have to go through what we did, what so many parents have, because of a lack of knowledge and understanding of this disease.

So, what did I really think of last night’s episode of ITV’s Doc Martin?  Initially, I was excited and amazed that Kawasaki Disease had even managed to make in into the public eye in such a dramatic way.  One of the nation’s most prolific TV channels mentioning something much of the country has never even heard about! Fantastic!  And then I watched it.

What were the positives?  Well, you get to understand the symptoms of the disease.  The little girl has a temperature, a red tongue and a rash on her body.  They allude to the fact that she may have peeling skin on her hands when a little boy remonstrates about having to hold the sick child’s hand on a school outing.  The child eventually collapses, and the show’s ‘hero’ appears.  After one look at the child, he makes a rather pompous statement, which went something like “this child hasn’t been eating sweets, she has Kawasaki Disease”.  And just like that, after seconds of seeing the child, he makes his diagnosis and drives the child at high-speed (she may die within 30 minutes apparently) to get her the treatment she needs to avoid the risks of a coronary artery aneurysm.  Amazingly the medication is waiting for them on arrival at the hospital and the child receives the treatment.  In terms of the programme, this whole thing took 3 minutes.  Remarkable.

So why the long face? It didn’t take long for the celebratory feelings to wear off once I let what I had just watched sink in.  Part of me still wants to believe that no matter how the issue was covered, any coverage is good for raising awareness of a disease that most haven’t heard about.  But (you could see that but coming couldn’t you!) it was scripted in such a glib and blasé manner that I wouldn’t be surprised if the message was lost on most viewers.  I suspect many won’t even remember the name of it today, let alone the symptoms.  And if they did remember it, I do not believe that anyone who hasn’t experienced KD first hand will have one iota of an idea about how serious, or how scary this disease is.

I know that the ITV would argue that Doc Martin is a medical comedy drama series; it does not profess to deliver messages in a serious manner (that can be left for the likes of Panorama and Casualty who gave KD some airtime about 20 years ago, in the mid-90’s).  We can be grateful that such a rare disease has even made it on the ITV radar, I guess.  But when you’ve watched your child battle with this disease, you can’t help but be left with a sour taste in your mouth after watching the episode.  In fairness to the programme, however, I am not a regular viewer so am unfamiliar with the usual format and scripting, and I know that they are likely to come under attack from victims of all manner of illnesses that they cover; they’re never going to please everyone.

If you watched the programme, and you think that Kawasaki Disease is a funny sounding illness, maybe even fictitious, then please know that it is very real, and is the leading cause of acquired heart disease in children.  If you think that it is easy to diagnose on first look at a few symptoms, please know that is not the case and often the symptoms come and go, disappearing just when you needed them to be seen.  In fact in many cases, not all the symptoms are present.  If you agree with Doc Martin’s assessment of the child’s parent being negligent by not noticing the signs, then please know that most medical professionals in our country have never heard of Kawasaki Disease, and many mis-diagnose the illness, sometimes with catastrophic results.  If you think that the treatment is readily available, please know that intravenous immunoglobulin is in short supply, and it is expensive.  It’s a product derived from human blood; we’ve probably all seen the marketing campaigns from various blood donation schemes recently – there is not a bottomless pit full of blood that we can all tap into at any time.  And if you think that all cases of Kawasaki Disease have a happy ending, you’ve just got to be a part of the support groups on social media sites to know that isn’t the case.  There are children currently fighting for their lives, and many that have lost their fight altogether.

I am disappointed in the programme, not only for its flippant handling of the illness, and think they could have done more to make it clear that this is a sinister disease that needs some real focus.  Many programmes include messages in the credits to support people who may have been a victim to the contents of an episode.  I think the ITV could have at the very least put up a public message about Kawasaki Disease, making it clear that this is very real, and even just supplying a link to NHS Choices for further information.

In order to reach a diagnosis, I had to watch a 7-week old Freya battle constant temperatures above 39 degrees for over 2 weeks.  Her heart rate was dangerously high.  She was resuscitated in a high dependency unit after her body started to shut down.  She had cannulae in every site possible in her tiny body, delivering a cocktail of various potent antibiotics, ibuprofen and paracetamol, and she was being fed through a tube.   She had blood taken every day for a period of 6 weeks, sometimes twice a day.  She had an MRI scan, ultrasounds, x-rays, ECG’s and echocardiograms.  She had 2 lumbar punctures, one under general anaesthetic which they performed at the same time as performing a bone marrow aspiration to test for Leukaemia.  She received a blood transfusion when her haemoglobin levels dropped dangerously low.  And she has received intravenous immunoglobulin – a product that is derived from thousands of blood donors – as well as a drug that shuts off the protein that is instrumental in the body’s fight against cancerous cells.  She is not even 6 months old yet.

Sounds shocking to read it all like that, doesn’t it? See all the tests that she underwent, just to try and work out what this illness was.  Kawasaki Disease threatened to take her life.  If the Rheumatology Consultant that came so see her on Day 12 of her illness had not suggested performing another echo “just as a precaution” the damage to her heart would have remained undetected, and her coronary arteries would have continued to dilate further and further until perhaps they wouldn’t have been able to stretch any more.  That means rupture.  Rupture means sudden, unavoidable, unpreventable death.

Now think about what you just read about Freya, and imagine now that her case is not the worst by far.  Yes she had a severe presentation of the disease, and her life was in very grave danger.  But as I type there are parents fighting against doctors won’t entertain a KD diagnosis, parents whose precious children have been in hospital for weeks struggling to fight off the disease, parents who still co-sleep with their children for fear of losing them, and worst of all there are parents sitting at home wondering how they will ever recover from the death of their child.

I cry every day.  I cry when I hold Freya in my arms and am overwhelmed with how much I love her.  I cry because I can’t shake the images in my head of how close we came to losing her.  I cry when I see other people happy, without a care in the world and no appreciation of just how lucky they are.  I cry because I am still heartbroken that this happened to my baby girl, before we had even had a chance to get to know her properly as Freya, just Freya.  I cry because I am so scared about the future.  I cry because I daren’t take Freya to baby groups for fear of her contracting chicken pox or the flu (as they can develop into another rare and potentially fatal disease, Reyes’ Syndrome) and I cry from guilt that she is missing out on a massive part of her development as a result.  When I visit the children’s ward at the local hospital where this all started, I have panic attacks.  Even this week, when I thought I’d be ok and felt no anxiety approaching the hospital, I was suddenly struck by uncontrollable sobs, and I couldn’t breathe.  I cry because I am grieving for the loss of my child’s health – she was perfect when she was born; Kawasaki stole that from me far too soon.  I cry because I feel the pain of every parent who is going through this, or something similar.  And I cry with frustration that more isn’t being done to improve the advice and support that is currently being offered by the medical profession.  Chances are I cry a lot because I sleep for less than 4 hours a night; not because I have a young baby – she sleeps through the night – but because I am permanently researching the illness or related issues, or communicating with parents and doctors on the other side of the world.  I cry because I am devastated, because I am sad, because I am frightened, because I am exhausted, because I am frustrated.  I cry because I cannot forget the journey we have been on, and am haunted by the playback of the last few months, which is constantly on repeat.

Freya’s Story (26)

Posted on by Bluemama

Today mummy had a meltdown that she didn’t see coming sweetheart.  It happened in the place where it all began; the place where you were born, and the place where you were nearly taken away.  I hadn’t expected how a visit to our local hospital would make me feel.

You see we’ve been having a few challenges  getting you the medication that you need.  You now only take 2 medicines; aspirin to thin your blood, and lansoprasole to protect you tummy from the aspirin.  The lansoprasole has a strong relationship with the aspirin dose, so if the aspirin goes up, so the lansoprasole is increased to make sure your tummy receives enough protection.  Sounds simple doesn’t it.  Well, it would be if it weren’t for a number of reasons.  Firstly, the aspirin dose (which is currently 5mg per kilo) is prescribed dependant on your weight.  At the last weigh in you were just coming up to 6kg (5.62kg to be precise), so the consultant increased your aspirin dose to 30mg.  Simple.  Ha! Except that aspirin (well, the cheap aspirin that the NHS supplies) comes in 75mg tablets.  Hmm, tricky. So we have to dissolve a 75mg tablet in 5mls of water and then give you 2mls of the solution.  The lansoprasole comes in a 15mg tablet which we have to dissolve in 5mls of water and then give you 1.3mls (precisely!)  Lansoprasole is intended to be placed on the tongue to dissolve, but clearly at your age you’re going to find that a bit tricky, so I have to dissolve it.  And it doesn’t dissolve very well.  Not at all.  So who knows if the right amount is dispersed in the water or whether you are actually getting 1.3mls of the medicine?!  To be honest I am more concerned about the aspirin, and being a dispersible tablet that one usually works pretty well.  Once I’d worked out how to get the air bubbles out of the tubes (syringes doesn’t seem like the right word – no needle?) I felt pretty confident that you were getting what you needed.

We are given a 28-day supply of your medication, which in usual circumstances would be prescribed by your GP.  Except our GP is refusing to prescribe aspirin because you are so young, despite it being vital and authorised by a cardiology consultant.  The problem we have is that aspirin isn’t licensed for use in children, so medical professionals (that aren’t used to cardiac issues requiring this treatment) get a little edgy about prescribing it.  And our doctors surgery had an incident where a baby was  given the wrong dose of aspirin for a cardiac issue as a result of poor communication between the hospital specialists and the GP, so they’ve made a decision that they will not prescribe without crystal clear guidelines from Leeds.  Add into the mix a baby who gains weight exponentially, and slack administration in Leeds, and you’ve got a recipe for disaster where no-one can keep up with the right dose, and our GP has closed that door for now.

This becomes frustrating when we run out before your next cardiology appointment is due, and there is always a window of about a week where I spend hours on the phone back and forth to your GP and the Cardiac Nurses trying to work out how I get you the medication you need it before it runs out.  At the moment you are being seen in Leeds once a month, which is good but even then there is usually more than a 28-day gap between appointments so we’ve found ourselves back in a situation where your medication has run out, but you are not back in Leeds until the 7th September.  A few phone calls though, and one of the Cardiac Nurses managed to organise for the paediatrician you were originally under in Doncaster to prescribe the medication (yay!) so today we had only to take a trip into town, rather than a 40 minute drive to Leeds.

When I set off with you and Fin in the car I had no idea that this trip would end as it did.  I was completely calm, matter of fact, a mum in a car on her way to pick up a prescription.  I had to go to the Children’s Observation Unit in the Women & Children’s Hospital to collect the script and then take it to the hospital pharmacy to collect the medication.  As I pulled up to the car park I did get a sense that this is where it all began, and I looked up to the top floor of the hospital and recollected those wonderful moments when I gave birth to you, my beautiful baby girl, and set free all the fears I had during the pregnancy that something bad was going to happen to you.  I took a deep breath and made my way into the hospital, called the lift and made my way with you and Fin up to the 4th floor.  The Children’s Ward, where you spent the first 8 days of your illness, was to our left.  There was a sign on the door saying it was closed.  Not permanently I guessed; sometimes when the wards were short-staffed they pooled the resources into one ward rather than keeping both open.  We turned right and approached the door to the Observation Unit, the unit where we took you after we had been seen in A&E.  I had taken just a few steps before a feeling of panic overcame me, and began to cry unexpectedly.  But I had Fin with me so I needed to be strong and brave and not let him, or you, see me sad.  So I shook it off and pressed the buzzer, but I couldn’t hold it back and walked into the Unit with tears streaming down my cheeks.  A nurse approached, she looked concerned, but I tried to collect myself and told her that I was there to pick up a prescription for you.  She asked me what the prescription was for, and for the first time since this whole ordeal began I could not for the life of me remember the name of your medication!  I remembered the aspirin, but no matter how hard I tried to summon up lansoprasole in my mind, it would not come.  I felt under pressure from the nurses watching the crazy woman (me) in the reception area, crying and looking like she was going out of her mind.  They said it didn’t matter and found the prescription for me.  I left the ward, and once out on the landing area I fell apart in heavy sobs.

I don’t think I’ve experienced a panic attack before, but I would say that was what I had right there on that landing.  I was gasping for air in between the sobs and I felt like it was never going to end.  Finlay looked up and said “why are you upset mummy?”, which pulled me from whatever it was that I was in and I took a few deep breaths before shaking myself off and heading towards the lift.  Although I was able to hold myself together better, I couldn’t stop the tears from flowing.  Seems to be the case these days – I can go days without shedding a tear, but when I do allow them to fall there’s no stopping them.  It’s worse when I am on my own and I am left with my thoughts trying to process the hell that we have been through together.  I must have looked a mess by the time we got to the pharmacy, and I really could have done without the rigmarole that followed as the pharmacist questioned your medication, the dose, the way in which it is administered.  We definitely need to get a more robust plan in place for your medication, especially when the cardiology appointments start to become wider apart.

Your Annie Nic says that I should go and see my doctor; that it isn’t right that I should have such bad days or that I find it hard to be alone and I might need some help to come to terms with it all.  But I think I am doing ok.  As well as can be expected anyway.  It’s kind of like post-traumatic stress isn’t it?  And it’s bound to come out now that things are settling and there is time for me to think about me.  I don’t know.  Right now I feel so confused about it all.  I feel like I’m doing ok, and then I’m transported back in time to those days where you were not my little Freya, when you looked so lost and confused and I couldn’t make you feel better.  I wonder how long I will be haunted by the memory of those weeks we spent in hospital.  If there will ever be a time when I look at you and realise that I’ve forgotten about anything but how wonderful you are.  I hope so Peanut, I really do,  because I don’t want to waste our time together agonising over what might have been.  The worst did not happen.  You fought back, and your little face shone again, and it continues to shine brighter every single day.  That light is the fuel I need to keep me going.  I’ve said before, this world is a much brighter place because you are in it.  I love you, I always will.