Ripples

   

I don't really know where this blog post is going if anywhere but I guess I'm just off loading here safely. Ok here goes, I'm unsettled this Evening, it's been slowly descending over me all day and now it's here. My heart is racing and I keep taking deep breaths. I just can't stay still, I'm pacing like one of those poor polar bears they used to have in Bristol Zoo during my childhood. Apologies to anyone taking part in a FitBit workweek hustle with me ! I'm resisting the urge to comfort eat as that will only deflate my mood later as I sugar crash ! Not even the thought of locking myself in the bathroom with candlelight, a bath bomb and soft music is appealing to me. In fact the music playing right now is anything but soft, it's angry. I'm back to playing Lily Allen's "Fuck You" at full blast with promise of other expletive laden songs on her album to follow.  Sometimes it's good to scream. 

       

               Last night I found out that another lady had passed away post transplant, she may have "only" been a Facebook friend but I admired this lady and her zest for life. She always made me laugh and that's a great quality. She had so much more living to do and I'm angry she didn't get that time. J was waiting for a kidney transplant , her medication to prevent her rejecting her heart had caused kidney failure, she was on dialysis. Sadly a organ never came in time. Having a heart transplant isn't easy you take a gamble because the odds were never in your favour. Without it you or your loved one would die. I'm just so sad that in such a short space of time we have lost three young ladies from our heart transplant family all with so much more living to do. 

When we lose someone in our transplant community we all feel the ripples of that loss. It makes us think when perhaps we'd rather forget. I keep seeing an egg timer you know one of those ones with the sand and the sand is slowly trickling through the top chamber. A cliche really but it's how my brain is thinking in pictures of time running away from Eloise. I don't want what I have taken from me. Bloody statistics, bloody life expectancies , bloody side effects, all hideous and scary. Hey it's all going to be alright isn't it, Eloise will be fine, she's different , positivity tries to drag me back from the darker side. I have to remain optimistic and have hope or it's all rather pointless isn't it ? 

      We just have to dust ourselves off and accept that sometimes transplant life is tough. We have no control over some of the external forces but they always seem to be the ones that dominate our lives. We get fixated on them. We can't focus on anything else. I find this is what happens to me when I hear that I've  lost a transplant friend. It brings every fear for Eloise's future crashing into the front of my head. All I can do is keep her healthy and happy, everything else is out of my control. I can't let this anger and sadness take over me as it clouds how I feel. It makes me want to sleep as if that's going to take the pain away. All that happens is I miss opportunities to be happy. So even though I'm struggling this evening and I'm yawning so much my eyes are watering I'm going to spend time with my children before bedtime. You can't go wrong with a cuddle from a ginger they're very healing ! 

    So huge hugs for everyone, I think we need them. At times like this I wish you were all here with me so we could hug and celebrate life. ❤️

                                 

        

Instruction Manual

Instruction Manual of Life - 

  

If life or my life had come with an instruction manual would I have read it ? Probably not ! I've never read any kind of self help book or "how to " book, maybe that's where I've been going wrong ? Would I have followed any of the instructions ? Maybe if they'd been laid out step by step like a Lego manual with bright coloured pictures of how to place a handful of bricks at a time. Actually I probably still wouldn't have bothered to read it. I rarely read for pleasure let alone because I had too ! 

I think my book of instructions would have been quite big and it would have had to have had multiple additions and updates. Or would my manual have known about the decisions I was going to make ?  Was my life programmed ? My life has managed to be quite complicated and difficult at times. If there is such a thing as normal life I'm guessing this isn't it ? 

         So there is no manual and I'm just making the rules up as I go along. Sometimes I get things wrong and that's just part of the learning . The experiences I've gone through are shaping my life, that explains why I'm not always in great shape physically or mentally then ! I often wonder "what if ?"  Or think "if only."  I'm only human . Did any of you have those puzzle type books where you read your own adventure by choosing to turn to page 56 or page 78 ? So each time you read the book the story would be different. In the book each turn of the page moves the story along. Real life is like these books each decision you make has consequences but in life there's no going back you can't rewrite life. 

       Everything we have gone though makes us who we are today. The fact we are still here shows we have the courage to get up and keep fighting . We all have "wounds and scars" but they show life was worth fighting for. It is. I expect if my instruction manual did exist the section on surviving would be pretty huge . Sometimes I feel all I did was survive, I hung on in there either clawing myself out of the "hole" or the right person throw me a rope. I feel it's good to share the fact that at times life can feel quite broken but slowly and carefully the pieces will go back together, it will always be flawed but still beautiful. You just need to be gentle with yourself and take all the time you need to self preserve. 

      I guess if I was living the dream life that I thought of during my younger years it would have been, husband, two beautiful children, lovely home, great career. So maybe to a point the book of life led me there ? I had all of those things , then someone scribbled on a page and tore it up ! Hell arrived in the form of Eloise's myocarditis and subsequent heart transplant. From then on the instruction manual became null and void, life's never been the same again. My new reality is pretty good though, no husband, four beautiful children, our own home, a perfect contract at work ( even if most of my ladies have left me) a supportive circle of friends and a good social life. The pages are just a little battered from the stress of having a potentially life limited child and all the post heart transplant difficulties. Then the husband had to go so that tore a few pages up as well. Oh well , I've managed to sellotape a few of the pages back together ! 

    So book or no book the only answer in life is to keep moving forward however uncertain the future is. You just have to do your best with what you've been given, though I really hate that bollocks that you're only given what you can cope with in life ! 

   I have learnt in life , as I'm sure you all have, that life is unfair. It always will be unfair so we have to fight for what we want and be as strong as we can for ourselves and for those we love. You have to believe in your decisions and actions. I often wish life was easy but would it then be dull ? A bit of dull occasionally would be good ! But it's the tough times , the times when we've fought and succeeded that earn us pride in ourselves and the feeling of satisfaction. It certainly makes my life story more interesting.....maybe even worth a read ? 

My life is my reality. Does anyone want to write a manual for me ? 

                                

Eloise's Heart Transplant Annual Review 2016 ❤️

Annual Review January 2016

Tuesday 9.30am

Envy, it's not a good feeling is it ? Not something to be proud of being envious for what others have. Is it less awful if you envy others good health ? Is it ok to be envious of people's healthy children ? No I guess it isn't . But today, tomorrow and other days I am envious , I'm being honest. I'm jealous that for most people the long term health of their children isn't on the worry list. It's on the top of mine. 

  I'm sat on a train looking at Eloise, she looks healthy and she's most definitely happy, yet I cannot see inside her body to know the true picture. We are on our way to Gosh, my stomach is a knot of anxiety. I'm worried what the next couple of days will bring out into the open. We are reliant on these tests to know how "well" Eloise truly is and how her transplanted heart is looking. I'm scared, I've already braced myself, the last two clinic letters have spoken of some deterioration some stiffening in one of the ventricles, I forget which one. I of course hold onto hope overall heart function is good. Is this the beginning of a decline in Eloise's health or just one of those things ? I need answers and I hope for reassurance that she's ok. Please let her be ok. I know thirteen years of post heart transplant life is good but hey I'm greedy I want and need more, my daughter needs to grow up and be who and what she wants to be. 

      I'm also feeling guilty as I'm sure others envy those years I've had with my precious girl. We've lived and made memories , I've watched her grow from toddler to young woman. Other people aren't so lucky in our transplant world. The call for a heart doesn't always come, there are complications at every stage, it's a huge battle and not everyone wins the fight. So I'm trying to balance my feelings not easy as I'm also feeling angry. I'm not an angry person, it's a waste of energy but right now I'm so angry. Angry my child was robbed of her heart by a stupid bloody childhood virus. Angry that I have to take her for tests that hurt her, they are invasive and some of them cause her pain. Tomorrow I will watch her sob as they cannulate her for her anaesthetic for her coronary angiogram. I will be there when she wakes up sore, confused and tearful. I'll be wishing I could take her place, take away her pain. I can't and as a mother, parent that hurts too. 

    So as this journey into London continues I'll try to relax as much as I can. I know my worrying doesn't change anything and what will be will be. Information is good right, we'll have a plan.

                 

     

Tuesday 13.15

       We arrived at 11am onto Bear Ward, Eloise was seen at 11.30. We saw the Transplant Team HSA , she was swabbed, weighed etc. Then had a chat about transition and day to day life with one of the nurses. I then signed the dreaded consent form, those complications they have to go through with you , with the reassurance of the complications all being rare. Isn't myocarditis a rare complication of hand, foot and mouth disease ? Yes, so you get my thinking ! Tomorrow Eloise will have her angio and ultrasound of her coronary arteries via her groin then she'll have biopsies taken of the right hand side of her heart to check for rejection. To do this they'll access her via her neck poor sod. She was then clerked and checked to be fit for surgery, she is !  No scary surprises, everyone seems pleased with her......so far. 

                

      

Tuesday 15.05

    Sat in Walrus waiting area, Eloise looking splendid in a pair of Primark black leggings and a Mary Poppins t-shirt. Exercise tolerance test has been completed, such a nasty test, wires everywhere and a creaking exercise bike. The cardio techs say she did really well but that may just be their encouraging words, but hey it's over and her heart rate and B/P returned to normal as they should. ECG has also been taken, nice spikes so hopefully a good sign that Eloise isn't in rejection. We both stared at the ECG print out as we are become "experts" at reading the signs ! Waiting now for Eloise's echo , i bet it takes ages and I'll worry. I'm banished from this test as Eloise is growing up, independence is good. My stomach will re-knot itself tightly. Then the final treat of the day the fitting of the 24hr B/P machine. Very awkward and not conducive to a good nights sleep. Ahhh she's been called in for her echo now. 

             

Tuesday 21.02

Back in the transplant flat in the Italian Wing , lying in our plastic coated bed hell. Thankful and laughing because Eloise's annual reviews are no longer in the height of Summer. Maybe we won't slither out of bed in the Morning ? I'll set an alarm in a minute for 6.15am, I don't know why as some huge amount of glass will be recycled at around 5am! 

        Eloise had her last Supper pre being nil by mouth in TGI's Covent Garden. Our waitress was very taken with her so gave her a badge, very small gestures like that make my precious girl so happy.  We caught up with her dad for dinner, hey he paid it was a good deal ! Eloise made us laugh so much , she's such a character. 

     A friend today said Eloise was braver than they were. I guess she's braver than a lot of people. She's my hero. I'm inspired by her. Her take on life is amazing , her attitude is exemplary . I feel we could all learn a lot from this child of mine. She gets on, never complains, well only about learning French ! In my opinion she's very well balanced . Maybe because she's different and not afraid to be herself she never feels judged. She doesn't dwell on things, doesn't worry, doesn't let life get her down. She's in a World she's created and she's happy. God I love her so much, such a quirky girl with a wicked sense of humour. We declined seeing the transplant psychologist today as what is there to fix ? Eloise said "no thanks she'll only think I'm mad." Maybe ????

      I'm not sure how well I'll sleep tonight in this strange room in a single bed with Eloise's heavy breathing......I may need to listen to some hypnosis tracks. Good Night. X

      

Wednesday 7.01

It was just as hot and uncomfortable in this room last night, Eloise has also made it stink of garlic, sorry anaesthetic team ! We both woke a few times thinking it was morning, then her B/P machine became disconnected and called out in pain ! Hopefully they'll have enough data. We have removed the machine now as Eloise needs to shower pre-op. So 24hr B/P monitoring equates to 15 hours ! When madam returns from the bathroom I'll put her numbing cream on ready for the dreaded cannula. We think she's second going down but from previous Gosh experience the cream is often applied late and then it doesn't work adequately. 

       Eloise had her last drink at 6.30 and took the medications she was allowed to take, she'll have bloods taken in theatre today. What's the betting her Tacro level will be up the creek ? The absorption will be different as she usually has it after breakfast not while nil by mouth. 

       I'm not feeling too bad, the day is here now, it can't be stopped it has to be faced. When we get to the ward at 7.30 there will be a flurry of activity so no time to dwell . So here goes......

           

Wednesday 10.24

   Sat in Eloise's cubicle she's next to go down. She's now grumpy as hunger is controlling her. She's watching mindless weird cartoons to take her mind of things. Eloise is totally rocking the gown and teal anti-embolic stockings ! Quite a palaver getting the damned things on, it made us laugh. Along with the routine pregnancy test ! She's not with child, we will not be welcoming a baby via immaculate conception at this time, phew, the relief ! Oh well these moments have made us laugh for brief moments at least. Oh and joy we have wifi too. 

             

Wednesday 10.50

I've left my precious girl with her Drs, it doesn't get any easier watching her getting upset when they miss her veins when cannulating her. Three goes today, she nearly crushed my hand , she was teary but stayed so still. Her anaesthetist apologised , it wasn't his skill it's just her knackered veins. Hate seeing her eyes roll in her head as the anaesthetic takes hold. Walking away from her and that image of her is so bloody hard. I really hate it. I have at least an hour and a half to wait now. Very hard to keep busy and my mind from over thinking. I'm going out for a coffee even though I feel so sick I know I must eat something. 

Wednesday 13.30

Eloise is back on the ward, she's grumpy and disorientated. She says her body feels numb, she's also feeling really sick, oh scrap that hello Ribena ! I think half the ward staff have now come to feel her pulses . They are there, they are strong if you have the knack ! Phew !!!!

     I've seen her lovely Consultant and he's pleased with her heart. Her coronary arteries are in great shape, no coronary artery disease . Very minimal increase in the ventricular pressure hence why it shows as minor stiffening on echo. But absolutely nothing to worry about. He's really, really pleased with her. 

     Now breathe.....I will talk to her Dr again later at greater length but for now I am grateful that Zara's gift continues to function well inside my precious girl. I've been in email contact today with Rebecca and it's been wonderful to give her this update. Without Rebecca saying yes to organ donation 13.5 years ago I wouldn't be sat in this room now. 

    I appreciate yesterday I was stressed and angry . I feel that was justified. Today I am relieved and thankful for so many things. Thankful, for Rebecca and her family . Thankful that Eloise has two skilled and amazing hospital teams taking great care of her, aiming to give her a long and healthy life. I'm thankful for every medical advancement that has been made and will be made in the science of transplantation. I'm thankful that I am privileged to be bringing up such an amazing child, her attitude to all of this makes my life so much easier, I learn from her.  I'm thankful for the peer support from my transplant family. I had to go into Social Media lock down this time and not share with everyone I was up here with Eloise. I feel that has given me the time and space I needed to deal with all of the uncertainty. I've had the support of a couple of wonderful people including Rebecca over the last couple of days. They've kept me going and I appreciate them so much. 

      So please raise a glass of something this evening and toast the continued health of my wonderful child. Hug those close to you and appreciate life. Love to you all. ❤️

2015 Lessons Learnt

Life lessons if only I'd learnt them earlier than my mid forties !  I guess they're called “life lessons” because you need to experience life in order to learn the lessons. So it goes that the more life you experience, the more lessons you learn. I'm hoping the things I have learnt this year help my confidence, my self worth and remind me what's important in life.

 2015 has on the whole been kind to my immediate family a few minor tremors but no major explosions. I'm grateful that we have had a more settled year, we certainly needed it, to regroup and gather strength. 

 I'm hoping my divorce and financial settlement agreement will happen very shortly . We're so nearly there, the boxes have been ticked just waiting to sign. I know that will bring me some inner peace and after nearly five years we'll have finally moved on. I've learnt I'm very capable at fighting for what I feel my children and I deserve and that I'm braver than I think I am. I have learnt that I can cope with more than I ever expected, maybe I'm nearing adulthood ? ( errrm possibly not I have just bought a box of Cinderella Lego ) 

    On the whole Eloise has been well, no admissions and only one chest infection caught very early. Her last two echoes have showed a couple of areas of change in function and there is some "stiffness" in the heart contracting but overall function remains good. Of course I'm anxious it's nearly time for her GOSH appointment. It's an Annual Review with an angiogram. I think what I have learnt this year is that worrying doesn't help.  That fear can sometimes be bigger than what you'll end up facing in reality. I have learnt to control my anxieties about Eloise's health and future. They are of course still there but not so controlling. I have always spouted off about living in the here and now but I think I'm now actually doing it. Life is NOW ! Life just continues to be a series of right nows. So learn to love right now, and you’ll be more at peace. I am. 

This lesson is still in it's infancy stages, I've learnt to love the skin I'm in. That my body is ok and not as awful as how I view it. We are all so critical of our bodies, yet they are amazing. My body just maps what I have been through to get to 46. Cellulite .....ermmmm I have been through a lot of food ! C-section scars from two emergency sections which saved the lives of Leah and Henry. Then the fat roll on top of the scar, actually that's the bit I detest the most as to me it looks like Joker's smile ! Varicose veins and broken veins from 26 years of being a nurse. Scars on my legs, from metal work and a fractured femur. Stretch marks from puberty , I was lucky not to receive any during my pregnancies. The list goes on. But at the end of the day how many people see you naked ? Those that love you except you the way you are. Body confidence shines through, it's nice to have compliments but it's good to be happy with what you see in the mirror every day. I hope by next New Year I can say I love my body and mean it 100%.

    I have also learnt to love the gym ! I've always hated exercise it was something that had to be done at school and has on the whole been ignored during adulthood with the odd exercise fad every so often ! I've had my gym membership since October 2014 but I think it took me a year to "settle" into it ! I love it now and hate not being able to fit in at least 3 sessions a week. The best reward for me is I feel alive and awake, less sluggish more alert. My mental health has definitely benefited, it's some good me time and you can't go wrong with releasing a few happy hormones.  My body is starting to change which is also a bonus. I have also learnt that I like an incentive, just like a kid with a sticker chart ! So for me my FitBit tracker works really well, I can see my achievements and I can have some healthy competition with my friends. So maybe I have learnt I'm competitive too ? The gym also has a log in feature on it's cardio machines and I love smashing my targets. Today I didn't leave until I smashed four personal bests !!! I'm hoping I'm improving my health as well as my outlook on life ! 

                    

   

     I have also learnt it's ok to need people to be there for you, that it doesn't make you a weak person and that sharing your fears can be a positive thing. It's just about finding the right person/ people and once you have done that it's easy. As long as the relationship works for you both and you don't drain each other it's ok. Friendships always need care to work.

  I have learnt you don't always have to be strong. No one will think any less of you if you admit your weaknesses. Failure is good we try so hard to avoid failure, but failure is the real evidence that we’ve tried. If you avoid failure, you avoid taking action. By accepting you may fail it makes you more human. I have learnt it's ok not to always be Super Woman and that if people are offering to help you let them. As sometimes we all need a helping hand. Being real, open, and vulnerable invites people in and allows them to relate to you on a much deeper and more intimate level. Vulnerability, practiced with safe and loving people, can help you to heal emotional pain which is crucial within our transplant world. 

A tough lesson and one many of us find difficult I have learnt to say NO, maybe not as often as I should have, thinking of Christmas ! I know that it's not selfish saying no to people and that you can't give away too many pieces of yourself. You must not lose yourself and you should only give to others by choice, not the desire for approval.

   I have continued to learn new coping strategies for when I'm stressed and that it's ok to express the need to be alone. Needing solitude doesn't make you lonely, it's the time you need to replenish yourself. 

I will continue to learn that people's opinions of me , my life and how I live it are just that opinions and that no one has the right to judge me . I am the only one living my life, yes I'll make a few mistakes , I'm only human but mistakes become lessons learnt. 

      Something that the journey with Eloise and her heart transplant has taught me is that life is a gift, it's precious but fragile. We all need to learn to appreciate what we have and be happy. Just make every day count people ! 

Happy New Year gorgeous friends xxxx

Space Invaders

I hope you've all enjoyed Christmas , well as much as you can. Sadly I know for some of you Christmas is an incredibly sad time as it just highlights the fact some one is missing from your life. I hope for you Christmas has been gentle and you've been able to remember past Christmases .

     After that thought I guess my post seems a little selfish, actually I feel a little guilty moaning about spending Christmas with an assortment of people . I always know in the few days building up to Christmas that I'm going to struggle with it mentally. I stop sleeping, I'm never great anyway but the insomnia intensifies. I'm so busy I don't have time to use the measures I usually have in place to stop me feeling out of control. So no long baths, no long walks, I only got two gym sessions in the week before Christmas as well. No alone time as it's the school holidays.

       So before I know it it's Christmas Eve and I'm cranky. This year I luckily got up at 5am so I managed to squeeze a gym session in before S collected Eloise and Henry to take them to Star Wars. By 11am I was walking back from the local shops and my parents were already in situ after driving up from Taunton. The invasion had started ! Relatives force me to be social, my dad especially likes to talk, I try to listen but I switch off. Even the TV is no longer in my control, actually it never is as Henry is master of the remote ! Anyway the day ticks along.....well drags and it's now the evening. Those that know me well know I like to retreat to a bathroom in the evening , prepare for bed and spend a couple of hours in my bed sit of a bedroom every evening to unwind and enjoy solitude. It didn't happen, it's nearly midnight before I go to bed. Crankiness cranked up a notch ! 

    Christmas Day, well I'm sure they could have written a comedy sketch or two. Actually most of it wasn't funny so perhaps black humour ? Before 9am I have already told my mother to "shut up" , the crime, the two teenagers are back in bed and Eloise is half an hour late with her pills. No big deal but mother tells me not to moan when Eloise's blood tests are up the creek next month, hence my response . By 10am Henry has had multiple melt downs he wants to open his presents but his dad and nan haven't arrived yet. Lots of stamping and grunting from the Ginge ! S and I are both exasperated with the older generation His mother had wound him up too. The day drags on, we eat late, it's a tradition . My mother then tops her earlier witchy comments by repeatedly telling Leah she'd put on weight and that was the problem with vegetarians , they pile on weight as they eat too many carbs. My dad joined in. Leah goes off crying, distraught. I follow her, she rejects me wanting to be alone. Mother then tries , she gets told by Leah to "piss off." This is all going so well ! Mother then wails she's ruined Christmas.....well actually for Leah that was probably true. Leah never ate again that day. We hug, I console her. I wish they realised how damaging their comments are. You see I'd heard them before. My dad used to delight in telling me I'd put on weight, obviously being so swelte ( not) himself he can judge others. Those comments stay with you, God I wish I was as fat as I was aged 21 ! 

       

       Boxing Day next more of the same really just no S as he had his partner and her son staying in the hotel with him. I did get some respite as I went shopping with Millie which was nice. On the 27th S left Bristol taking Henry and Millie with him, the noise levels dropped significantly but I still didn't feel at ease. 27th is a Park Street shopping and Burger day so pretty enjoyable . I feel fine out of the house less suffocated. 

  

   Then hurrah it's the 28th, at 10am we wave good bye to my parents. I doubt they had even turned out of the road before I started taking down the Christmas decorations. I just cannot bear having them up after the event ! I cull everything but the lovely real tree in the living room. I love that one, it looks pretty. All the other rooms are decluttered, all fuss removed and furniture put back in its rightful place. Tension seeps out of me. I go to the gym, I smash targets. I chill out, I watch TV, I have a bath, I read, I eat and drink tea. My pyjamas go on, I spend time alone in my gorgeous bedroom. I sleep, soundly for nearly 11 hours. I'm restored, I'm happy and calm again. I'm just ME. ❤️

         I don't know why I'm so territorial about my home and I find it so difficult to share it with others. I think it's being a host, I'm truly rubbish at it. I like to do what I want, my agenda ! I like the routine I have normally and how it fits into family life. I find it hard to meet the expectations of others while preserving my own "self." I'm not sure if there is a solution really or than grin and bear it, you know suck it up buttercup......and whinge on social media ! Anyway I'm really enjoying the time I have. Now is good. 

              

     

Jigsaw - a peace (piece) of mind.

Jigsaw - a peace (piece) of mind.

Peace of mind - noun the absence of mental stress or anxiety 

Piece of mind - give somebody a piece of one's mind . To express one's opinion  strongly; to voice one's disagreement or dissatisfaction , especially with another person; to scold or rebuke someone.

Oh how these two are entwined in my life, like that tangle of fragile silver chains discarded in your jewellery box. How wonderful to be truly free from mental stress and anxiety, I doubt if any of us are that lucky. 

Having a peace of mind is quite important I think as it makes you appreciate all you do have in life rather than what you feel isn't right or is missing. 

I think a peace of mind can be achieved by living in the present. I know a lot of my stresses and anxieties are linked to what I have been through in life already and what I fear for my future. I think actually for me the uncertainty of the future makes me most fearful . When I get like that I try to remind myself ( it's often bloody hard) that this very moment right now is all I really have. I cannot change what has happened to me and I have limited control over what will happen because of certain actions. I have to embrace what I have now and enjoy it. Take each day as it comes and live it fully with no regrets. When my mind tries to wander I drag it kicking and screaming back to the moment which is now. I know I'm lucky as most of my days are good ones.

Peace can of course be very hard to achieve especially when you are going through tough periods in your life , it takes effort and time. We are worth investing in so please make time for yourself. I feel if I go down mentally I'll take too many people with me so I'm worth stabilising ! 

    We can all find things that help us feel more at peace, what do you do to relax and chill ? 

For me I sometimes need to walk, it doesn't need to be anywhere special but I enjoy visiting NT houses and gardens. I just like to breath, breathing seems so much easier when you're walking amongst the trees and fields (I am an inner City girl !) I also like walking to Clifton Village and walking over the Suspension Bridge, I like the Downs too. Visiting the monkeys at the Zoo, they really relax me and make me smile. I like taking photographs when I'm out and about as well.

    The gym is also a good place for me, I find I work out better if I have some tension or anger to work through on the machines ! I can also swim there, I find water incredibly relaxing . The bath is therefore another perfect place for me. I love the sound of the sea over pebbles but that's not always available !

      Solitude is another thing I crave. Sometimes I can have interacted with too many people and I need space to feel at peace. That's sometimes hard to find in a busy household. That's probably why I like retreating to my bedroom in the evening. Me time is very important. 

    Writing is a great firm of therapy, it doesn't matter if any of you read this. It's not important as the important bit is that I have released my thoughts into cyber space ! If this gets read it's a bonus....maybe.

          Finding the right person to talk to can make a huge difference to how you feel inside. Knowing there is someone who is there for you, someone that knows you and how you tick. If you find that person you're very lucky.

      So I urge you to find some activity that makes you feel more relaxed. So that's a "peace of mind "explored ! 

  

  Moving onto giving someone a "piece of (your ) mind" I'm either fabulous at this......ok, ok sometimes a little opinionated and harsh or I'm bloody rubbish. Then I usually just mutter under my breath in madness or run the conversation that never was in my head a few times ! 

     Why don't we allow everyone to know exactly what we think of them ? Politeness, fear of the consequences, lack of effort, not wanting to antagonise or rock the boat, maybe we are just too nice and non confrontational. Many reasons I guess.

               So that's probably why I'm having an odd Christmas yet again with my Ex and his mother, actually stranger than the past 4 years. My teeth are gritted, I've moaned to everyone else but them . I guess I hold back because it's not all about me, children's needs always come first ( well with me as their mother ) and I'm not divorced yet so still toeing the line until we've signed our agreement. I guess giving S a piece of my mind would take rather a lot of time and emotional energy for very little gain. He just wouldn't get it, I think he has the toughened hide of a rhino !  So I guess if you're giving someone a piece of your mind make sure you can spare it. X

The Gift of Life, organ donation.

Organ Donation has been in the media a bit more over the last month or so which is good. I must say I thought this years National Transplant Week in September wasn't as good as previous years, very little media coverage nationally. Such a shame really as donated organs continue to be in desperately short supply and people continue to die waiting on the list. There are many "good news" stories that could have been shared.

        This week Wales changed the way it's Organ Donation System works they've gone to an opt-out system. This essentially means if you are over 18 years old and have been living in Wales for over a year your details are automatically on the organ donor register. If you do not want to be an organ donor you can opt-out. Interesting to see what percentage of people do choose to opt out. In a year it will be good to see if this increased the number of transplants performed. I think the hard bit is it's nice to think of organ donation as a gift that the person whose organs you received wanted you to have them, they made that decision. Whereas this may leave you thinking they'd forgotten to say no ! Whichever way you look at it though we need to continue to promote organ donation and the register as much as we can. So people aren't dying waiting with the odds of finding a suitable match in time stacked against them. Such a lottery but what better prize is their than life, without life there is nothing...,...

When questioned around 96% of the British public agree with organ donation but only 33% of us have bothered to sign up. Shocking statistic really, as its so easy to register these days. Most of us spend time on the internet daily and it literally takes two minutes to register on line. I can't see what anyone's excuse is ! You're more likely to need an organ transplant than become a donor. Being on the register doesn't mean some body snatcher is going to harvest your organs before you're dead. Think about it if you were dying and the only chance you have of surviving is an organ transplant what would you do ? Say no because you hadn't bothered to sign up yourself ? I expect you'd beg to get listed and start campaigning for more organ donation awareness like the rest of us flung into the transplant world. 

         I signed the organ donor register in 1989 it seemed a good thing to do. I carried my card around in my navy leather Filofax (the iPad of it's time). Never thinking that organ donation would touch my life in such a huge way. Fast forward to 2002 my daughter is dying in the Freeman Hospital Newcastle. Now organ donation got real. I was waiting for a like minded individual to say yes to their toddler being an organ donor. I didn't think it would happen so I didn't want to hear too much about the procedure and aftercare. Why worry about something that may not become your reality? Horrible watching your child fade away from you, looking at them covered in tubes and wires, cold and lifeless in a huge hospital bed, with the sounds of the ventilator and infusion pumps. Willing the monitors not to alarm, watching the screen for any changes. Knowing that your child's survival depends on another dying, it's just bloody hideous. I know the person who donates their organs is brain stem dead and has no hope of survival, only machines keeping them "alive" but it's still hard to think about. Thankfully after 24 hours on the list Eloise got her transplant, but sadly this meant another little girl didn't survive her illness.

          I totally appreciate how lucky we are that Eloise got her second chance of life, I often reflect on it and how life could have been. I wish everyone who needs a transplant got their chance. Sadly they don't. Recently a little girl whose story I'd been following passed away, she was a similar age to Eloise at the time of transplant, so a toddler. She waited too long and i.v medication could no longer keep her stable so she had a Berlin ( mechanical) Heart fitted. Sadly she suffered a catastrophic bleed on her brain a short time later and her parents made the brave decision to let her go. Then there's another little boy again a similar age he's been in hospital since March on a Berlin Heart waiting for his call. Of course 13 years ago Berlin Hearts weren't available so not an option to keep Eloise bridged until a suitable heart became available. She was due to go on ecmo the following day so at best had two weeks to live at that time, but again ecmo has risks. 

      This week we've all been saddened by the loss of a lady called Leah. She had her heart transplant in 2010 and later she was given the go ahead by her transplant team to try for a baby. Sadly 5 months into her preganancy she started having complications and fluid around her heart. In the end baby Aria was delivered early as Leah's condition deteriorated. Leah's heart was badly damaged so she was listed for a second transplant. She never got to see her baby girl as the decision was made to turn off Leah's life support. 

        These sad stories are the reality of the transplant world, it's harsh . I was talking to a couple of work colleagues this week about these stories when someone asked what programme this was on. No TV programme just people I know through peer support groups such as Heart Transplant Families UK . I do think Channel 5 did an excellent job with their three part series Gift of Life. Such a shame it was on at 10pm , I'm sure many people missed it. It showed transplantation in a non sugar coated way, nothing was hidden. It was very sad in places as a couple of the people followed passed away but up lifting to see how lives are transformed by organs that would otherwise be cremated or buried with their original owners ! I can't think of a better legacy to leave behind than life ! Can you ?