Stood at a Crossroad

Stood at a Crossroad.

         

Just a little blog post about change and trying to deal with it I guess. Weighing up different options and making decisions something I'm notoriously bad at ( I blame it on the stars as I'm a Librian)  The thing that I am excited about is the fact I have choices, that I can continue as I am or I can veer off into something new. So I have called this post "Stood at a Crossroad" because crossroads symbolise decisions and they are about changing direction. I have choices that must be made not just because things aren't working out as planned, but because some aspects of my life could be improved upon. It's easy living in my "normal."  Change has to happen.

        Experiencing the end of my marriage, the challenges of bringing up four children alone, dealing with Eloise's health issues ,ongoing changes at work, maintaining a relic of a house, managing my finances etc could have left me paralysed with fear and honestly at times I'm a crumpled , tearful, broken mess. However I also feel stronger and inspired to make some changes. Taking Eloise's health issues out of the equation I'm actually looking forward to the future, something I have feared for well over a decade, since Eloise's transplant.   

 I guess at the moment I'm in the transition phase, I've acknowledged the fact I need to make some alterations in my life but  I don't even know what changes I am going to make . Something inside my head at the moment is telling me it's time to move on. I wish my head would give me a clearer picture as my heart is leaping about in fear and my insomnia is back with a vengeance !  I'm trying to work out who I am and who I want to be, no wonder I can't sleep . Not knowing I suppose is part of this transition process. Before I know what I want next , I have to work out what aspects of my life are no longer working for my 46 year old self. Perhaps having the top of my ear pierced two years ago wasn't my mid life crisis and I'm actually having it now ? I'm just happy that I feel I have potential to change, adapt and move on. It's quite a forward step.

       Some ideas for change are only small and are just thoughts beginning to grow in my head. I just don't want to get stuck in a rut , I don't want life to be ordinary, I want it to be amazing ! I am a control freak, I like things just so, so I am sure I will find it hard to make changes but I feel I should embrace change, relax and go with the flow. I must not fear change because things staying as they are may not give me the best in life. 

      I guess I just need to trust and be guided by my deepest feelings. Sometimes I am quite wise, full of pearls of wisdom but sadly this is usually me giving advise to others. Therefore not me sorting out my own problems ! I know I sometimes chose the "easy life" option, which doesn't give me the best outcome. 

     We all have dreams, I just need to help mine grow rather than writing them off as impossible. Some small changes could get me nearer to reaching some of my goals. I don't stretch myself enough.

    Sometimes life can be a bit chaotic here, the house is bursting with stuff, clutter and four very lovely but extremely messy young people. I have to share out my time with work and raising my family but keep enough time back for myself. I try to find a balance and I am lucky I do usually get precious time with my thoughts. I think quite a few of the changes I need to make are to the house, some things are major and will involve money and tradesmen but others are more simple and I should be able to implement them myself. Soon I will be receiving more maintenance money from S and taking over all the bills and the house from him. So I will have quite a few financial changes to manage. I am so ready for this change and I am looking forward to independence and home improvements ! 

       Work wise I don't think I will be making any changes at the moment. I don't feel it would be advisable to give up the perfect contract, with the shift pattern that fits in with juggling the children and allowing me to spend a lot of quality time with them. When your child is life limited creating memories and enjoying every precious minute is the priority. My job allows me that. However things change and one day I may make a change , even change direction completely. I'm not sure if any of my skills are transferable , time will tell.

       Soon we will experience some changes with Eloise's transplant care. As she is 15 and a half we need to start transition to adult services. Also her very wonderful Bristol Consultant who has been with us since the day she was diagnosed with myocarditis is retiring. Now I guess we either transition her now , or possibly go through changing consultant now and at 18 years old. There maybe an option of a consultant that can see her as a child and adult which would be my preferred option, a more gradual introduction into adult care. Then we need to decide on a adult Transplant Centre, at the minute there are two in the running Harefield and Papworth . So more decisions, more change. I am extremely grateful though to get Eloise to nearly 14 years post transplant, she is one of the lucky ones. 

       On a personal level , I have already made a few changes. I'm embracing the gym and really enjoying seeing the results. Next a few alterations to my diet so my hard(ish) work isn't in vain ! I'm also really glad that nearly three weeks ago I had the three moles removed from my face. They may not have been that obvious to other people as they were flesh coloured but I was beginning to hate seeing them in every photo of myself. Yes, totally vain, I'll take that but it's really made me happy. I feel more confident and lack of confidence in my appearance has been an issue for many, many years. It's good that my mindset is slowly changing because if you can't love yourself how can you expect others to ? 

                      

 I have a small group of people in my reality life who are very positive , supportive and encouraging. True friends that are available when I need them to help guide me. I only need guidance I don't need to be told what to do with my life. Just people who listen and let me express myself . The ones that really know the real me, scars and all. They are the ones I know will stick around for the long haul journey no matter how bumpy the ride gets ! Pass the sick bags, I get travel sick ! 

    So I'm excited to get to this cross roads and see new horizons. 

                         

Self Sabotage, time for change.

Who is your enemy ? Do you have a nemesis ? Do you have someone you hate with a passion. I have experienced a whole myriad of emotions because of my feelings towards other people but I don't feel I actually hate anyone enough to label them an enemy

                          

     

  I am however my worst enemy , I'm not very kind to myself. I beat myself up quite regularly seeing my failings but being blind to my successes. I'm sure that's true for many of us, we don't like to blow our own trumpets and when others compliment us we  don't accept the compliments gracefully. Even today I was given a wonderful compliment but did I take it ? No I threw it back out there, I made a sweeping judgement and almost ruined a lovely compliment. Thankfully I saw how stupidly I was acting and I apologised and took the compliment as my friend was being genuine. I guess it's my thoughts and beliefs that are my biggest enemies. I get in my own way ! 

   I have little confidence in the way I look . Certain clothes make me feel happy as I think they fit me well and suit me but on the whole I'm less pleased with my image. This seems like such a shallow thing to say.  Yes of course I'll have good days when the mirror is kinder than others. I wonder is the image we see in a mirror the way we look to other people ? Don't get me started on the lighting in changing rooms, do they not want you to buy their clothes ? Jeez you go out thinking you look ok then clock yourself in a variety of angled mirrors, it makes you want to sob. This is even worse if you've had to strip to your underwear to squeeze yourself into an outfit. My cellulite has cellulite, yuck. I definitely look better with my clothes on ! Confidence , are we born with it or does it develop from being nurtured ? I seem to have missed this crucial stage of development. Thankfully my girls aren't so lacking and that makes me happy for them. However small changes in my mind set are happening. I've given up on weighing myself every day, it only made me sabotage a diet. I've given that up too, no more dieting ! Both removed from my life and replaced with a FitBit, hypnosis, a well used gym membership and the feeling of my clothing getting loser ! I no longer crave anything as nothing is out of limits. 

     I think the lack of confidence may stem from being brought up to be modest, I think a lot of my generation were. Maybe people still are I'm not sure. With strangers we have to "sell" ourselves more so they get to know us quicker and so we tell them our good traits. I don't like doing this, it's as evil as the dreaded study day role play !  With my friends who I see or interact with regularly I am more modest and never boast about my positive traits. It just doesn't sit right with me. I guess friends who we have known for ages know us and what we are good at and because we want to remain friends things go unsaid as who likes a bragger ? I suppose the worry with modesty is when it becomes low self esteem. When we always fear our abilities are lacking. I wonder sometimes what I am trying to prove and to who. I can sometimes become preoccupied with being a "superhuman" , by the way I'm so not ! See I've done it again, self sabotage ! I think self sabotaging is quite common in people like me who have insecurities.

    At the moment I have a fear of change, my divorce and financial settlement that has  been dragging on for years is nearly at the point of finalisation and I'm scared. I'm not even sure what I'm frightened of. I have solo parented my four children from birth, attending all their parent evenings, hospital appointments, assemblies, school activities etc alone so no change there. I have run this home and kept it going alone. I have juggled so much alone and I've done ok. The only difference will be I will be responsible for paying all the bills but I will be getting maintenance from S to enable me to do this. So very little will change but I'm unsettled. Without the money I couldn't afford our home and lifestyle and I appreciate how lucky I am but I can't help at times feeling like I'm the paid nanny. As S only has to do the fun side of parenting the money feels like it's my wages. I really hope I stop feeling like this soon.

     I would like to think I'm doing the parenting side of things as well as I possibly can. That I'm giving my four children a solid foundation in life. I'd hate to think the break down of my marriage has damaged them and ruined their chances in life. I hope they all achieve their dreams, stay healthy and remain happy. I'm sure that's what we all want for our offspring . They are my greatest achievement, what I am immensely proud of. Four individuals, all here because of me, yes I know it took two. I achieved my dream , my dream was a simple one to be a mother, the advanced bonus dream also achieved, to be the mother of four. How truly lucky I am. Perhaps in my role as a mother I am more confident and not my own enemy. 

     It's really hard to learn how to love yourself and stop being so hard on yourself. These are some of the things I do or I'm trying to do at the minute.

 Exercise has become a big part of my life especially in the last 6 months. I've had a gym membership for the last 18 months but it's more recently that it's become important. I can feel the physical and mental benefits of exercise. It's good for my soul as my happy hormones are flowing and I need to go regularly to feel balanced. Also I can see small positive changes in my shape, and I like it ! I'm still quite negative about my body but I'm trying to remember all its been though and survived.

                              

     

                     Going out, I love days out, evenings out, time with friends old and new. I'm lucky that I have willing babysitters so I have rediscovered my social life and I like it. This is of course balanced out with my need for solitude. I love my bathroom zoning out hours, I love being alone in my bedroom like now, it's bliss. Being alone is ok and saying you need time out is also ok.

      I'm a real city girl but lately I have swapped my shopping trips for walks in the Countryside and breathing in deeply the fresh air  it has been good. I love taking photos when I'm out, I'm thinking maybe I should get a better camera and do a photography course? 

       Frock Friday has been going now for a couple of years it's been a very good concept for me, it started originally to get me out of my mum uniform of jeans and a shirt one day a week. To say you don't need a special occasion to dress up. Now you'll probably find me in a dress and the now obligatory matching underwear that started a couple of years ago as well. It feels good and I enjoy choosing matching sets.

      I'm starting to learn that I cannot please everyone , that I'll always have my critics, that there will be people who don't like me and people I don't like. But it doesn't matter, it's fine, just the way it is. I just try to not be judgemental as I don't know what that individual is going though, just try and be kind.....not always easy I agree ! I try not to let people take advantage of me, a relationship needs to work both ways. 

                

Smiling is good though, the more I smile the happier I feel and I like to know my friends are smiling too. It's nice to make others smile and feel happy. So slowly I'm learning to like myself and I'm sure the love will follow. ❤️

Growing Up !

Don't grow up its a trap ! 

                            

I want to write welcome to adulthood but I'm not sure I'm there yet, although I guess I've been an adult for 25 years. Oh my goodness I'm shocked myself 25 years, what I'm 46 how did that happen ? It's bloody tough being grown up isn't it, harder than I imagined when I watched my parents being adults ! 

        I couldn't wait to be an adult for stupid reasons like eating a whole tub of ice-cream out of the pot and the fact I could stay up actually not not just up but out until all hours. How extravagant , how exciting, how free . I could set the rules and live by my own rules and it would be truly amazing.  Yes I did eat that tub of ice-cream until I reached nausea  and I most definitely stayed out all night because no one was waiting up worried about me.  I partied , got drunk (very and often) , went to nightclubs 3-4 times a week and wandered home on my own in the night, you know all that stuff that freaks us parents out. I met boys that would have been deemed unsuitable if viewed by the parents and it didn't matter. I was away from home. I was living my life and enjoying it. Then I settled down, got married , had a baby, and another, and another and then there were four ! 

    But now I'm here solo parenting and allegedly I've been a grown up for ages , it's not always fun is it ? It's not what I imagined and I think I fail at this grown up malarkey quite often . Which wouldn't be so bad if I wasn't responsible for four children, poor things.  It's hard juggling everything, even harder on your own. I find it hard keeping everything and everybody afloat. Mind you I don't think I do so bad at the parenting stuff that's the easy bit. We have a lot of fun together, I like actually no I love our little unit. Having children has been an extension of my own childhood.  I like watching Disney Films, going to the Zoo, building Lego , playing Barbies none of that's a hardship. Being a fussy eater I even like the same food as my children, in fact their tastes are more exotic than mine. I do loathe the park, soft play and other such places frequented by other people and their children ! 

I'm always grown up and sensible regarding Eloise's health and transplant issues, I wouldn't take risks with her health or the other childrens. I do think hearing your child's life maybe limited changes your outlook and priorities. If you came to our house you'd see how much time and money it needs spending on it, poor old Victorian thing really needs some TLC but that's not fun. House maintenance and improving is a grown up thing, so how do I deal with it. I ignore it and we go to the cinema , the zoo or shopping instead ! Time is so precious.

The grown up things I don't really like doing - I don't like sorting out my money, the fear of logging into my online banking and not liking what I see, remembering to pay bills , hoping the Ex has paid me on time. Having money in my purse for all those unexpected things each week, like numerous collections at work . I'm lucky that I'm good with money, good at spending it too but I do save for the things I want like our Annual two weeks in the Sun. It's an expense but I value the quality family time and the chance to make memories with my children. I have hated how long it's taken to sort out my divorce, bloody solicitors sucking money out of us and causing friction . I'm actually looking forward to financial independence then I can make some long term plans......oh maybe not that sounds all too grown up. On a serious note I so must write a will , it's not something any of us want to think of, our own demise, but on this I need to be sensible. 

   Stupid one next , I hate putting the bin out. Well more I really bloody hate sorting out the recycling, it's all organised for a few days then it's all chucked in the cupboard which means a boring ten minutes on a Thursday sorting it out. I know it's bugger all time but hey my blog, my space to moan ! It's Thursday tomorrow.....sigh ! 

     Health, finding the time or being bothered to have your eyes checked, go to the dentist and Dr. Your sensible self knows it's important but time is precious and I'd rather spend it doing lovely things like eating cake. Also being a grown up even if you have a fear of the dentist you have to dig deep and be exceptionally brave so you don't put your fears onto your children. Thankfully it's just the hygienist I hate and I visit her when the children are in school. 

   Work - I never climbed the career ladder, not even one rung. Maybe I'm not grown up enough to take more responsibility or maybe I'm sensible and my priorities lie elsewhere. Also I feel I have to keep my stress levels low in as many aspects of my life as I can as . I cannot take my work home with me in my head the space is needed for other worries. 

    Commitments and friendships - now here is an area where I feel I have made progress and I'm fairly adult in my choices. I'm not scared of commitment but I also know I'm independent and capable of being on my own and that's refreshing. When I was young I had fairytale expectations of falling in love with Prince Charming , the man of my dreams and of course we lived happily ever after.......oh bugger we didn't ! My marriage wouldn't have featured in any Disney Movie, well not unless Tim Burton was directing ! Then I fell down the rabbit hole that is Tinder. However I like being on my own, I enjoy my space, my times of solitude. I guess I'm sociable on my terms ! Friendships have evolved, moved on or broken down, that's life. I've made new friendships with the right people , gaps have been filled and I feel lucky to have my special group of friends. I try not to be drawn into toxic relationships, in reality or Facebook, the later being harder even with the unfriend feature ! I don't feel I need to please other people, I don't need to be liked, my opinion is as important as the next persons and I don't need to be popular, so maybe I am beyond my teenage years ? 

                               

So I guess I've got a foot in both Worlds, one still in my childhood and one in adulthood, maybe that's the best way to be ? Life's meant to be enjoyed, we only get one go at it so why should it just be 18 years as a child and 70 as an adult ? That doesn't seem right to me. So here I am in my bedroom with my Cinderella Lego, my cabbage patch kids, my wicker pram from my childhood , my cuddly monkeys, my dancing Elmo and my Mary Poppins DVD etc. All mixed in with my grown up  paraphernalia. 

   

Social Media and Me.

Social Media and Me.

Today the 4th of February is Time to Talk Day helping to dispel the stigma of mental illness.  Mental health issues are common and we must not forget that as one in four of us will be affected by mental illness in one year. Just because you can't see it doesn't mean it's not real. We all have mental health, and it's as important to keep our minds well as it is our bodies. So I hope you've all managed to have a conversation or two today in real life not just Social media land.

I'm lucky that I've managed (just) to keep my mind well. It's sometimes a struggle, today I can feel sadness creeping in, a lump in my throat and tears threatening as I've heard more sad news from my Facebook transplant World. It's been a tough few weeks in the outer circles of my transplant life. So here I am blogging, thinking of locking the bathroom door and lighting candles. All my coping mechanisms will be put into place to keep my mood stable and to aid my sleep this evening. I do often look back at certain times in my life and wonder how I made it through. It would be wrong to say unscathed as I know I have "issues." However on the whole I've been lucky , I've kept my smile and I've remained an optimist. 

    As well as Time to Change Day it's also Heart Awareness Month and today is World Cancer Day so my Facebook feed is full of posts on Congenital Heart Disease , Mental Health Issues, Cancer and the usual stupid animal film ! All have touched my life , well ok not the animal stuff !  I have a mild congenital heart defect, Eloise has acquired heart problems , I know people who have struggled with depression , I've lost people to suicide and my dad has had kidney and skin cancer. So to me the posts mean something but if your life hasn't been touched by any of it what is it like to be bombarded with such posts ? Irritating or enlightening, or are you just bloody relieved it hasn't happened to you ? There's no right or wrong answer.  It's hard getting a balance isn't it, as Facebook and other social media sites are great free platforms for sharing information and awareness to a wide and diverse audience. The Motherhood challenge was another such Facebook gem, being lazy I didn't join in but I'm glad as I have friends who never became mothers and I have friends who no longer have their precious children with them. Why would they want to be swamped by such posts, in such engulfing quantities. 

       This led to further thinking or over thinking. I over share my life. I shove loads of transplant stuff down your throats. I'm wondering how many of my Facebook friends have actually unfollowed me ?  Maybe I need to give it all a rest . I'm sure you don't care whether I'm in the gym, shopping or eating every single day of the week ! I need to shut up ! What the hell did I do pre social media ? Maybe I spoke to real people.....no probably not ! My house was probably cleaner ! Maybe I was just out living my life ? Again I think I need to find a balance or take up a lovely creative hobby to occupy my "spare" aka wasted time ! 

How many of you on my FB are my friends in reality , it's weird when you think about it as on the whole we've stumbled across each other through chains of friends, friend of a friend , of a friend. Or we share a similar interest , so on my FB , heart defects, transplant and being an older mother ! Most of us will never meet but we have a connection. Social media is all about acquaintance ! 

 All the support groups on Facebook are a positive as Members of these groups for example discuss their health conditions, share important information, and resources relevant to their conditions while creating strong support networks. I know I have gained so much because of  a support group or two, it's brought together a wonderful network of people. People who understand what I'm going through as they're travelling a similar path.  It's good not having to explain how I'm feeling to my transplant family. Knowing these people makes me happy we are united but at the same time we all feel each other's pain when things go wrong. Social media brought us all together and I cannot turn my back on it even when things are incredibly sad. I sometimes think of closing my account for a while and letting myself heal. But I can't really as I do feel useful and needed within my transplant community. I may sit back every now and then to regroup my thoughts and find the strength to help again. When Eloise isn't great or if she has an appointment I go AWOL, Twitter became my friend in 2013 as I found FB too much. I'm only human , we all are and I'm not immune to the sad news I often hear. 

                    

         

   So for me Facebook is great for keeping in contact with family, friends, old work colleagues as well as people with similar interests in my life mainly organ donation ! Sadly though in FB support groups or just on a page post I have also had to deal with the rudeness of strangers. Ignorance, arrogance, anger, and just about every other misdirected attitude someone could throw at me has happened on FB . In fact, it's probably worse than in reality as there is more anonymity and distance online, this gives people a false sense of courage. I've come in contact with some truly vile individuals , who have spat out their hatred and upset me greatly. Which then makes me angry because I'm letting them get me down yet they are nothing to me ! Ahhh the button to block an individual is a wonderful tool, my blocked list is quite extensive, I've angered many or been angered ! When will they invent such a thing for blocking difficult people in real life ?  

 

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. ❤️