A Piece of Me

A piece of me

                                           

      

“It feels like everyone wants a piece of me.”

Just the above really, life seems to be hectic at the minute and the school holidays a distant memory. The past three weeks have been a whirlwind physically and more so mentally. Thank goodness I relaxed for nearly six weeks and took good care of my mental well being. At times over the past three weeks I've felt overwhelmed, rushed and at times even buried under the weight of so many competing demands. This middle aged lark with aging parents and young children can be a challenge . I feel torn and scattered running my home, working ( very part time I know ) and caring for many loved ones. I feel shattered into many pieces and incomplete.

    Yet at the same time it's good to feel needed and wanted, it's good to know you can make a difference. There are times in my life that I have felt very alone and very isolated. Partly because I didn't reach out to people and partly because I hadn't found the right people to engage with. I never want other people to feel like that. I hope by sharing Eloise's transplant story and our fourteen years of experiencing the good, bad and ugly we can reach out to people in a similar situation. 

    I just wish life could be more balanced, at the moment I'm in the "it never rains but it pours" stage ! Just one thing after another and I feel like an emotional wreck, then I feel guilty for feeling this way. I've cried with sheer frustration, I've cried as I'm tired of all this, I've cried because I'm sad, I've cried because I'm angry. Yes it's been a soggy month so far, sorry pillow and thank you waterproof mascara. Thank you work colleagues for dealing with my tears, just don't ask if I'm alright next time. I am ok really just a break from dealing with anything else would be good, time to catch my breath then I'll be right back with you. 

       

   

      Most of the people who need a piece of me, would be at my side propping me up if I needed them. I no longer allow the takers to take, having been previously drained by some people I no longer allow this to happen. The relationships and friendships I have now are equal. We scream on the roller coaster of life together. Also I give pieces of myself to people I've never met, people in the transplant community again this is my choice and I'm very happy to provide that support. 

   So I'm hoping for a few days of the quiet life and spending quality time with family and friends this weekend. Starting to rebuild myself ready for life's next attack as it will happen.  So please life let me have a weekend of loveliness, let me sleep, let me clear some of the fog dampening my restless mind, just let me be........thank you. 

Behind the Smile

Behind the Smile.

         

I like to smile, I have the crows feet to prove it and I'm very thankful for good teeth that allow me to smile broadly ! Thinking now of the dental horrors regularly seen on Jeremy Kyle ! Here I'd like to take the opportunity to say a few thank you's. Thank you  orthodontic services at Musgrove Park Hospital for my removable brace, thank you Colgate toothpaste, thank you to lipstick manufacturers for colouring my smile and thank you mum for good teeth ! 

       Seriously I'm a generally happy soul but sometimes I'm smiling to hide the pain from you. It's easier you see than explaining, it's easier not owning up to how I feel as saying it out loud makes everything seem worse. It makes it more real. I've had a blissful six weeks at home with my children.  Everyone has been well and we've had the opportunity to spend quality time together at home, on day trips and on holiday. It's been all very normal. It's been perfect, nothing has reminded me of the darker times. Oh and that thing called sunshine brightened up most of my days. I have been able to relax fully and read a library of books whilst sampling many icecream delights. Oh and the odd alcoholic beverage !

                                    

       

    

                 Then Eloise had to have her blood tests taken on Thursday, this also meant a couple of frustrating phone calls to make the appointment.  So now we're waiting for the results which involves harassing the transplant team by email and phone. Then her next hospital appointment will need to be arranged for next month, again this will need to be chased up by me. We've sorted out a cupboard of medication, put in prescriptions and collected a previous order. I know none of this is a big deal but it's a reminder that Eloise has had a heart transplant. Then this morning I had an awful dream , I'd been told Eloise had chronic rejection and her treatment options. I wrote out a whole post updating you all. When I woke up it took me a while to know I'd been dreaming or having a nightmare. Sadly some of my transplant family are living this nightmare right now. One day it could be our reality too, nothing in the transplant world can be taken for granted, not even one day. I look at Eloise enjoying life, hanging out with her friends, doing her school work, loving her tortoises, laughing with her siblings and I want to see her grow up. I love the young woman she's growing into. She's 16 on Wednesday, to have her with me aged 16 is wonderful, once it seemed impossible but I know her now and I'm greedy for more. Yes I'm grateful for every extra day I've had but I'm also sad that her life maybe limited. Then there's the guilt for even thinking she maybe taken from me at a young age, like I've written her off, like I've given up on hope, I haven't.

            It's Organ Donation Week this coming week, it's starting tomorrow and I usually immerse myself in it but I haven't this year. Im not ready for it. I'm wondering if it because I've just spent 6 weeks mainly out of the transplant loop. Not ignoring my transplant family but not submerging myself in it either. I have looked after myself and my own . I took a step back and a few deep breaths. Now it's arrived and if it's anything like last year's event media coverage will be poor, but I can't complain as I've done nothing to promote the organ donor register. Well I did try and beg for a free gym membership for Eloise but Duncan Bannatynes not replied yet........think of the publicity for your health clubs Duncan ! 

        My smile is genuine as I have many, many, many reasons to be happy and lots of fabulous friends who light up my life by just being them. Maybe we all need to live our life like we are dying, because we are. I try to do something that makes me smile every single day, all the little things soon add up. The tears I experience aren't too often even though they threaten to creep from my eyes, I halt them. I'm not depressed, I don't think I have ever been and I know I'm lucky on that score. I think I have every right to express sadness and that actually shows I'm capable of feeling. I'm just a human, trying to do her best for many people while remembering to look after herself.  I'm just ME and I'm not so bad..........

                       

      

The Struggle is Real

The struggle is real - 💙

                         

   

Wow it's been nearly a month since I last found solace in my blog. Poor neglected page, I take from that the fact life has been busy, beautifully so not the boring grown up drudge busy but fun we're on holiday busyness. We are lucky enough as a family to be able to afford a holiday away in the sunshine together. Time to just be a family with nothing getting in the way. In fact three of my children are still basking in the glorious weather in Spain. God I'm missing them so much, can't wait to hug them all. Totally appreciating that on Sunday I'll have them all in my arms again. I'm so lucky to have the four of them I know that. Sadly I have lots of friends who have lost a baby or a child, they'd do anything to receive another hug. 

    

    I'm generally a happy person and I often have a smile on my face. Sometimes I'm just facing the world with a smile and I'm crying inside. I know I'm not the only one who does this. Maybe it's just easier not to have to explain how you're feeling. Those who truly know you will see through this facade though. They can tell you aren't "your normal self !"  When I friend makes this discovery with the fateful words "are you alright?" Then I'll cry, the mask of happiness crashes to the ground and the tears cannot be hidden. Actually it takes courage to face the world and go about your day to day life while you're breaking inside. However I use that strength to its best advantage , knowing that each day is a new day and that my track record says I'm a survivor. I'm a different person now, there's no going back in life. No rewind button, no second chance or opportunities to change what you've been through. 

                                              

  Some days this holiday I've done nothing, if the Sun's been shining I've taken myself outside with a drink, book, deckchair and a few tunes on Spotify and just relaxed. I've had to stop feeling guilty and realise looking after myself isn't a waste of time. I've just had to allow myself this time to simply be. I guess it's been like my bath zone therapy with added vitamin D ! Other things like chores can wait but your mind can't. If it's struggling you have to listen to it and take the time out you need. Some days all I'm doing is coping but that's ok too, it's enough. I am enough, I am ok. I waited five years to be divorced then it arrived and it's shaken me a little. I'm sure I'll find my footing again and get everything organised financially . Things like this also put my mind into turmoil . It's been tough enough for me to welcome my enemy insomnia back into my life. I've still some way to go but I'm proud of how far I've already come. I guess these annoying life struggles have changed me, I think I'm stronger, still need to work on the roar . As to whether I'm a better person, I don't think I can judge that ! I just know I have to do this my way, so I can't blame anyone, or rely on anyone, I have to be independent for god's sake I am nearly 47 !

  Life is tough at times, but can be made easier by having the right people by your side, looking out for you and steadying you when you stumble or helping you up if you fall. I don't feel we have the right to judge people or be negative about them. Are you perfect, go on be honest ? Even I'm only practically perfect.....in every way though. We all have our faults and flaws , things we aren't proud of. We are all learning throughout our lives and you live life through experiences. I've learnt who I want to share my world with, a small inner group of friends. I know they want to be there and in what capacity. They believe in me when I see nothing positive, they love me when I feel unloveable, they spur me on when I want to give up. I hope I pay this all back to them, we should all pay forward, the world would be a better place. Most of the time I'm not a misery, and I hope my friends get to feel my positive energy.

I don't want you thinking I'm not happy, I am. You know how it is with me. I'm living the almost dream with a small black cloud.  Most of my blog posts are the same really, woe is me. I am ok but I also know it's ok not to be ok. I don't have to be all singing all dancing every day , just 99% of the time ! I just see these struggles I'm having at the moment as steps towards a better me, a better life for my family. I know they'll end too. My family is strong and we've overcome many obstacles together so what's a little struggle going to do to us?  All we want is to be happy, well healthy as well ! 

       

    So there you are another random blog post ! For now I'll just accept the few struggles I'm in the middle of. The word acceptance means that you perceive reality accurately and consciously acknowledge it.  So I'll try and do that, sometimes it's hard to accept tough things but struggling with them is even tougher. I need to accept I'm only human and therefore I don't have any super powers. I think by accepting my struggles I won't be swallowed up by them, I'll confidently overcome them. I guess you don't realise how wonderful life is until you face challenges and struggles, in our case Eloise's heart transplant ,extended family health issues and my divorce . Life not always easy but in my opinion always worth it. Appreciate it people.

             So I'm off to bed in a minute to wrestle some demons and try to grab some of that valuable commodity sleep ! 

A visit from Auntie PAT

Auntie PAT has come for a visit. I am sure quite a few of you know her and she comes to stay with you as well. 

PAT equates to Pre Appointment Tension . Well  it's here , I am experiencing it right now. 

  

So far my sleep isn't too disturbed , for which I am grateful. I think insomnia is the most torturous kind of anxiety . It drives you to tears when you just lie there with your tangled  thoughts . You feel so alone in the dark. When you sleep you can forget your worries and recharge your batteries for the battle ahead. I am sure insomnia will rear it's ugly head next week but for now I am grateful.

      Palpitations are pretty horrendous, they started last week, heart is really jumpy . I hate that in the throat  feeling. It is so hard to regulate and ignore. I try to calm myself but it's not easy.

   

My other symptom is feeling sick, that stomach churning dread in the pit of your stomach. It also grips and gives you cramps. I have to deep breathe to overcome the anxiety. But I am trying to control it.

I think because I have had such uncertainty with Eloise over the last few months I have had to find some coping strategies and put them into place. I am more aware of my own needs and mental health.  I have enjoyed writing updates in Eloise's FaceBook group and have found off loading to be beneficial. Hence why I started this blog, my therapy an insight into how things are in my World. I have also retreated to a Sanctuary otherwise known as the family bathroom. An hour long soaking session by candlelight with relaxing music, time to zone out ! It works, I know when I need to be alone, when I am getting twitchy ! 

    Social media has played a big part too. I have found some great friends on Facebook over the years but I have found a lovely new support network on Twitter which is working well for me. Great to connect with new people, even upgrade them from social media friends to reality friends. I have also found that even though I run a Heart Transplant support group it is not for me. I don't want to post updates about Eloise in the group although I do in her own Facebook group.

 

   There is no right or wrong way of dealing with anxiety , you just have to find what is right for you, it's all about self preservation , for some they need to be surrounded by others for me I think I need to retreate and switch off a little, so lock down and protect myself.

One more week to go then it's off to GOSH for Eloise's rescheduled early Annual Review, ECG, Echo, bloods, chest X-Ray, exercise tolerance test, MRI scan and a coronary angiogram. 

A picture tweeted to me this week sums things up well X

Lucky Ones?

What is luck ? Do we just make our own luck ? 

I sometimes describe Eloise as unluckily lucky, hhmmmm that does not make sense so let me explain. Eloise's myocarditis was caused by the usually mild childhood illness Hand, Foot and Mouth Disease. It left her with severe dilated Cardiomyopathy (DCM) and fighting for her life in intensive care (PICU) After 2 very unstable weeks Eloise was due to be transferred to GOSH on Wednesday 5th June for her transplant assessment but there was no PICU bed available. So instead she flew to Newcastle, luck being with her then also as she had an amazing medical team from Bristol Children's Hospital fly with her and keep her alive , she did have other ideas!

       I do believe fate took her to Newcastle as Eloise received a ABO Mismatched heart transplant, she is blood group A and her donor is a B. Again was is luck that Eloise did not have any antibodies to blood group B ? At the time she was the third ABO Mismatch that Newcastle had performed the 29th in the World and GOSH hadn't done one at this point. Newcastle took the risk, she was lucky and 11 years on it is fair to say they made the right decision . Also against the odds just 24 hours of being listed she got her heart transplant, it is hard for babies and toddlers to receive transplants, less potential donors , is that not lucky ? Three people a day die waiting for a transplant. 

         Eloise's heart transplant very nearly didn't happen. To be a donor baby Z had to have a diagnosis, her very brave mummy held her while she was on life support so a lumbar puncture could be performed. This diagnosed her form of meningitis . If she had a cardiac arrest during this procedure her organs wouldn't have been any good for Transplanation. Luckily this did not happen. Then when Eloise was being taken to theatre for the transplant she arrested I watched the team working on her seeing how fragile she was,  how her life was hanging in the balance. They got her back safely , she suffered a further cardiac arrest in theatre, we are so lucky she survived the surgery and had no long lasting brain damage.

    After 4 weeks post heart transplant Eloise was transferred to GOSH so her new team could get to know her and set up her care and appointments. On arriving we were greeted by a Dr whose first words were "Hi, you've come for transplant assessment " I frowned and felt confused surely we'd just done that bit? It seemed no one in GOSH was convinced the heart Eloise had been given was going to be any good for her ! Horrendous time of such uncertainty, I could not imagine going through everything again so soon. But after a week we did leave hospital.

The negativity towards Eloise's heart transplant from the GOSH team stayed for quite some time, years infact.No one wanted to see "The ABO Mismatch from Newcastle!" I used to hear them in clinic, lovely Dr Rees used to see her, he thought she was amazing and made me feel happier about the situation. So from a heart that was no good for her Eloise has had an amazing 11 years of good health. 

      We have been lucky with her post transplant for someone who is immunosuppressed she is extremely resilient, she has had mild chicken pox, two ear infections caused by swimming pools that required anti-biotics and 2 colds. She is does get the occasional cold sore but otherwise she's a healthy kid. Sometimes I get angry with the whole transplant situation , the why Eloise? Why us ? It can be incredibly hard but you have to think that right now 22 other families are waiting for the chance of life ,a heart transplant for their child, they want what we have been given. It feels wrong to be moaning. Eloise did not die waiting, she is alive.

      So right now we would like some more luck please, we got literally to Eloise's 11th Heart Day unscathed living the post heart transplant dream then bang ! Two rejection episodes a grade 3 in June and a grade 2 in September. The September episode although milder rejection has caused more problems a very persistent pericardial effusion that required further draining in November and unexplained tachycardia of 130 beats per minute.

      Nearly time for Eloise to face all the tests again as we need answers, her June annual review and coronary angiogram have been moved forward. So please, please wish her good luck, a turn of fortune would be good !