If only it was this easy............
One of my lovely cardiac / transplant mum's posted an interesting article on FB on PTSD and whether it was something experienced by the parents of children with cardiac conditions. The more I look at the article the more sure I am that the answer is yes. I previously only associated PTSD with our war veterans who have seen and felt the unimaginable now I can see it as a disorder relating to many groups of people. People just like me........
I have found a good outlet for my tumbled thoughts in my writing and this blog. I say much more here than I'd verbalise not because I'm afraid or upset just because my writing doesn't stutter or say it all wrong. I'm not looking for sympathy or any answers or replies the act of putting down words is the therapy knowing the words are read just a bonus ( a lovely one , thank you x ) So I'm thinking do I display symptoms of PTSD ?
Well I can have a very big tick for experiencing trauma ✔️
The whole transplant journey has had its traumas but big ones for me are being in the quiet room of BCH and being given minimal chance of ever taking Eloise home alive. I can recall many of the conversations we had around that time. Word for painful stabbing word, nothing positive to grasp.
I think this would indicate PTSD the major life changing events happened 12 years ago but they're still so fresh in my mind. Add in the difficult 8 months with Eloise's health in 2013 oh and that thing called a broken marriage ( not heart related I know but a tad stressful ! )
Repeated intense memories or flashbacks ✔️
Visually the worst memory is watching Eloise arrest on Picu at the Freeman, that can be replayed at many speeds in colour or black and white , clear words, echoed or muffled , slow or fast many variations but all recalled in the blink of an eye. Yet this all happened 12 years ago. Soon I have my paed resus training at work and that evokes many memories just the words "critically ill child" add in a few bits of equipment from the Resus trolley and I'm back there.
This is the bit that screams PTSD at me, of course I'm no expert and I don't actually need a diagnosis , I'm just trying to understand my mind a little better. To see that actually how I feel is a normal response.
Avoiding people is a no but avoiding places ✔️
I hate cubicle one in A/E at BCH it was the room Eloise was in when she was taken ill. I can remember the Drs and nurses talking about her case outside the room. Hearing the words cardiomyopathy and feeling sick and faint. Of course as Eloise has three siblings the room has never been avoided. On the 10 year anniversary of diagnosis I went to A/E had a hug and shed a tear with the A/E consultant , she remembered that day too.
I think this is just a normal response not PTSD why would I like that room ?
Persistent fear of the Event
I'd change this to a fairly persistent fear of the future but one that's not at the forefront of my mind every day just on significant dates or appointments or when bad things are happening to other members of my #TransplantFamily. So a small dark cloud on a sunny day. I've also described these fears as being safely boxed inside my head before but I think by writing down my feelings, fears etc the lid's often ajar these days and that's ok. I'll let you all have an insight into what it's like living like this.
Feeling detached from others ✔️
Yes I'd say that but I also understand it as the transplant world is fairly unique , so variable no two journeys are ever the same, so many paths some lovely and smooth and others so rough there seems like there will never be a happy ending. I also like solitude so perhaps I sometimes make the gulf wider. Also it's so hard to explain all of this to others, sometimes it's easier not too.
" I'm fine " how often do you hear yourself saying that as its easier than blurting out the truth as you know not everyone wants to listen to your true feelings as they cannot cope. Why should they understand ? Also I find I cry at those words if they're asked when I'm having a wobble especially at work !
Outbursts of Anger ✔️
A tick for anger not really outbursts for me more the gritted teeth "Why did this fucking happen ?" Kind of anger , lots of why, why why ? Followed by what if........
I think I'll always be angry this happened to my child even though I can follow it up by saying how lucky I am to still have her here today. Still pissed off !!!!!!!
Difficulties sleeping or concentrating ✔️✔️
Yep the big one bouts of insomnia, days, weeks and quite often months not a year yet thankfully. This week I'm not too bad a few wake ups but not too broken, I've not got up out of bed for a week or so. I think the sleep will deteriorate again as we near Eloise's annual review in a couple of weeks. But I guess pre appointment tension is quite a common phenomenon !
So yes I'm an insomniac but is it related to PTSD ? Probably not .......just middle aged woman syndrome ?
Poor concentration yes at times but that could be sleep deprivation and having a million things on my mind right now it's pretty fried !
So this is probably not PTSD either.
So just a little run through of just one small list of symptoms , who knows whether I have PTSD all I know is I'm not the woman I was before all of this , I never feel totally carefree , almost but not 100% but who is ever truly satisfied with all they have until they nearly lose it ?
Today my lovely friend at work said Eloise was amazing with everything she goes through and I was too. That meant a hell of a lot. I'm not amazing just a mum desperate to do all she can to keep her child with her and well, physically and mentally. My "job" is made easier by my Eloise. It's hard when you lose members of your transplant family especially when they are children . When Eloise was having her difficulties in 2013 two other children were also unwell with similar problems and tragically they've both passed away. It makes you so grateful but desperately sad.
Survivors Gulit now that has to be part of PTSD for myself I'd give that a very big ✔️ the initial guilt of someone's child dying and yours living but only at a price.....receiving a heart transplant. People dying on the waiting list, people dying from complications post op, people needing second transplants etc.
Guilt.......how do you deal with that ? Live with it ? It's so bloody tough but it's the only way, life goes on with or without you. I guess we owe it to all those whose journeys were cut short to live and love life and to try to make a difference every day xxxx
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