Quite a Week !

Last week was always going to be on the stressful side, the trip to GOSH for Eloise's annual transplant review was looming. I'm never reassured just by looking at Eloise and asking her how she feels anymore. The stock answer at the minute from Eloise is "good" not sure whether that's an upgrade from "fine" ! I do wonder these days how does Eloise really feel, her body only really knows how it works with her transplanted heart. Anyway I digress again.

        I was sat at home drinking a cup of tea, waiting for the girls to come home from school . Busy Evening lay ahead as we had Eloise's Subject Evening ( apparently I am wrong when I call this event parents evening! ) Then a train to catch to London, as we needed to be at Gosh for 9am Wednesday I booked a hotel . Anyway my mobile rang, it was R Eloise's donors mum, she'd never rang me before. She sounded flustered and apologised for ringing me. She was going to feature in a Channel 4 news piece that evening because of the media interest in the 6 day old baby who became Britain's youngest organ donor. The call was to "warn" me that they'd be showing Z's picture, R wanted to make sure Eloise and I were ok. We chatted and I reassured her we'd be fine. The news would be on at 7pm so I asked Leah to record it as I knew we'd be travelling on the train then. 

           After a very good subject evening for Eloise and a couple of hours travelling we settled into our hotel room and feasted on an M&S picnic . I logged onto the wifi and went straight to Channel 4 catch up. There it was the news piece and straight away I saw a picture of a very cute baby, for the first time I was seeing Z . Eloise and I sat there listening to the news, of course for Eloise this was the first time she'd seen R . I think she was intrigued to see Z and R but not worried or upset. Just very level headed about it, in true Eloise style. 

           I've been asked how it felt to see Z's picture for the first time, I wasn't upset or full of emotion. I wonder what the correct response should be and whether not feeling much is odd ? It's not really something many of us ever encounter, I can't gage how I feel on many people's experiences , also we're all unique . It's an odd situation isn't it, looking at a baby knowing her heart is beating inside your baby. Knowing she's the reason your child is alive and her courageous family of course. Don't get me wrong it was lovely to see a picture. I guess in my mind I had an image of this toddler who saved my child's life. This new image was more vivid, real and replaced my fuzzy idea of what Z looked like. She's a very cute little girl and it's lovely to see her smile. 

       For me I just felt so proud of R she came across so well and I'm sure she moved and inspired many people with her words. I'm happy that you've seen her now and heard her side of our very special story that sadly only came about after tragedy. I'm glad she never regretted her decision to donate her baby's organs and that she's been comforted knowing two children's lives were saved. 

       Then on Sunday the story was in the Sunday Telegraph, move moving words from R, you cannot fail to admire this woman's strength . A true hero, our hero. Thank you will never be enough but it's a start. I know how lucky I am to know R , things could have been so different for me. Yet still now Eloise and I are this lady's priority she was worried about us seeing Z's picture but we're so happy she feels ready to share the image of her beautiful little girl. Z and her brave mummy not only saved Eloise's life and the little girl who received her liver but by sharing her story others will have been encouraged to sign up and that potentially means more lives saved. 

              Yesterday it was my turn to warn R that I was publicly going to post a video of Eloise on Heart Transplant Families UK public page. F a photographic media student filmed Eloise over a couple of days for a website on organ donation he was doing for his dissertation. He also filmed our lovely friend and fellow superhuman K . The results are amazing , really fantastic films. I hope they encourage people to talk about organ donation and sign up ! This morning I woke up to a lovely email from R telling me what a gorgeous and brave daughter I have. I'm touched xxxx

     

       

     

               http://vimeo.com/117767282

http://www.candourcreative.co/optin/opt-in.html

PTSD Post Traumatic Stress Disorder

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

Solitude

       

Do you ever long or need to be on your own ?

 I do , quite often. I find I just need to get away from people sometimes. Previously I think I've described myself as socially anti social but last night I found a much better quote. I'm not anti social I'm pro solitude. 

      

I do like people, pretty hard to be in my type of job if you don't , ahhhh the lovely general public. I love my family and have a wonderful group of friends but sometimes I need my space to be alone. Alone doesn't mean lonely, I'm so not lonely . I like my own company, I enjoy chilling out of an Evening after Henry's in bed, reading, being online or watching TV , doing totally as I please. I like shopping on my own, I like walking around Bristol on my own with my camera, I find water very calming. At times of stress solitude is found in a locked bathroom, warm bath, candle light and soft music. It's a coping mechanism that works for me.

                                       

 

        On the 23rd of December S and his mum arrived , being polite I felt unable to be in the sanctuary of my bedroom in the Evening. On the 24th December a huge envelope of financial papers arrived from my solicitor for me to complete, I could feel my stomach knotting and my stress increasing then my parents arrived, no escape as the hostess ! By 25th of December Warren arrived into the mix , I guess I was a little worried on how this would be received too, stress increases.......stomach cramps, headache and indigestion type pain. With a host full of guests I wasn't able to get away, to have peace, a relaxing bath. I'm pretty intolerant to noise so I find too many people in a room hard with a TV or PlayStation booming away. See I'm a misery aren't I ? It was 5 days until most of the visitors went It took its toll, I felt unsettled. I wouldn't not invite everyone but I may need to find away to manage the situation better next Christmas, give my own needs some thought I guess. Book a hotel room 😉 ! 

      It's taken until this week to chill out completely again, back to enjoying a relaxing bath and quiet evenings alone in my room. My need to be alone is no reflection on the people I have in my life. I just need breathing space, time to reflect, regroup my thoughts and face another challenge or day. I then enjoy my time with my friends and family as its special .

          I think I just have a lot going on at the minute, lots to think about, my thoughts are a little preoccupied therefore the insomnia is trying to come back. I'm managing all of this the best I can and solitude works for me. But are we ever truly in solitude in this high tech wifi , mobile phone etc age ? I'm sure I'm not the only one whose heart sinks when text messages ping or Facebook messenger alerts you etc. You just cannot escape people, it's like being on call 24/7.  Maybe that's the problem, maybe it's the electrical devices I need to turn off and then my overactive brain will switch itself off too. Just a thought...........