Harnessing my Demons.

Harnessing my Demons.

                                            

The date that is forever imprinted in my head and breaks my heart is nearly upon me again. Time the great healer hasn't eased this day for me. It's not been erased, it's not faded. Even just writing that my eyes are starting to prick with tears. It doesn't matter that the day that haunts me was 14 long and mostly happy years ago. I'm not depressed about it and it won't blacken my mood too darkly with despair. It just won't go away, I can talk about the day quite easily to most people without breaking down , not even a crack in my voice. It doesn't upset me talking about what I have experienced. I'm quite happy to discuss Eloise's health and transplantation as long as you want to hear it as it is. So I don't feel therapy of any kind is the answer, I seem to be able to provide my own therapy most of the time, hence this musing ! 

                     The memories of that day are vivid, conversations, noises, monitors, whimpering Eloise, sights, then pain such unbelievable pain. Life changing, just one sentence, "your child has cardiomyopathy" no make it just the one heart destroying word "cardiomyopathy " Such a bastard disease, my daughter was a ticking time bomb with an enlarged poorly, contracting heart that was barely functioning yet her little body had compensated for this for weeks. The picture blew was taken just four days prior to her being admitted to hospital, there is no sign that Eloise was so seriously ill. 

        

  

 Later I was to find out that myocarditis caused by my nemesis hand, foot and mouth virus had caused the cardiomyopathy. I remember sitting there staring into space, trying to listen to the Drs words as I felt fainter and fainter. I was cold , clammy and extremely nauseated. Bristol kids A/E room one, the walls started to close in on me. That feeling of fear stayed with me constantly for many weeks, months maybe a whole year. Even now it continues to weave it's way through my life. It's fair to say fear is lodged in my heart and mind because nothing post heart transplant can be taken for granted. The last fourteen years have shown me that. Eloise has had her tough times and sadly we have lost transplant friends to complications . It's hard not knowing what is going on inside your child's body as even when seriously ill with a big enough pericardial effusion (fluid around the heart) to cause her heart to tamponade ( compression of the heart) she was walking around looking fantastic ! 

       It's very hard being a mother anyway but add in a child with a serious, potentially life limiting condition it knocks you for six. It's hard to know how to act. In the beginning I felt like not sending Eloise back to nursery, then a few years later I didn't want her to go to school. If the time I had with her was going to be limited I didn't want to share her. I didn't want to miss one precious minute. But it doesn't work like that, life has to be as normal as possible, Eloise needs a normal childhood and the same chances in life and experiences as her peers. 

              It does feel wrong letting that one date still eat away at me . I try to see it positively when I'm thinking more rationally . Eloise survived, she fought back, cardiomyopathy didn't claim her life, just her heart, but that's a bloody important part! I know I'm lucky she's here and that mainly her post transplant life has been complication free but each year she's here the problems seem to increase and I'm not afraid to say I'm scared.  I love her so much and I cannot look into the future as I'm afraid she won't be in it. There I've said it, I am optimistic and yes of course there is always hope. But there has to be an element of realism sadly post heart transplant complications exist. Of course Eloise will prove me wrong and medicine will advance at great speed......it had too. I went to an NHSBT patients advisory meeting the other week and a Cardiothoracic Dr from Glasgow said "its a good time to be alive." I'll hold onto those words.

     So let me think now about my medical miracle Eloise. She survived for weeks with a heart that was barely functioning. She survived being sedated to be intubated and then she survived two weeks in intensive care at Bristol Royal Childrens Hospital. She survived being flown by air ambulance to the Freeman. She survived two cardiac arrests . She survived waiting for a transplant. She then survived being on bypass and the actual heart transplant surgery . She has survived so many anaesthetics, angiograms and biopsies. She's survived two episodes of rejection and is living with a persistent pericardial effusion. Looking at it like that my child is an amazing fighter with a good track record on surviving ! I'm proud of my Warrior Maiden. 

     Eloise is growing into a fine young woman, she's fun , quirky and a computer geek. She loves life, school, her friends , her tortoises, sometimes her siblings. Take French lessons out of her life and I think she'd say it was perfect. She would rather have a cardiac procedure than learn French as it stresses her out. But that's normal teenage life and she'll just have to get on with it. 

                                      

        So the 23rd of May, I'm ready for you once again, I'll not let you win. I am already experiencing horrendous dreams and daytime flashbacks, vivid pictures with sound. Eloise being echoed and the Dr treating me as a nurse not a mother. Trying so hard to soothe Eloise as she's repeatedly cannulated unsuccessfully and so desperately wanting the dr to stop. The feel of her body cold and deathly still as she lies on a cooling mat. Whole painful , devastating conversations with her consultant, sitting in a soulless room being told her chances of survival and the bleak odds she was up against. I'm already feeling on edge, unsettled, my stomach churns and  I feel sick at times. I'm often left feeling light headed, out of sorts and my heart palpitations are frequently occurring which isn't great at the gym ! So it feels like one of my best coping mechanisms exercise is eluding me. I'm trying to keep busy and I'm spending as much time as I can in the sun with a book. I just know most of these things are stress responses so I'm trying to balance them out with coping strategies. 

                    This year I'm at work as well, the place where my World came crashing down but also the place where my daughter was kept stable enough to be transferred to Newcastle for a transplant assessment. The hospital and the people in it will always be very special to me, so perhaps I'm better off being there with people who have always been by my side. So please excuse me if I'm not at my best. I'm just dealing with a lot of emotion in the best way I can. I'll try to embrace the day and my demons. ❤️

                                        

Bump- Crash Landing

Bump- Crash Landing.

                            

  

Do you ever wonder why your life cannot just give you a break and run smoothly ? I do.

I often feel things are going well and of course in essence they are. However I never feel entirely relaxed though, there is always a niggle of doubt. I'm always guarded as I just seem to lurch from one problem or issue to the next with periods of calm in-between. Enough time to allow me to catch my breath . 

 I wonder if I ever feel 100% happy ? I think I do but I'm often too scared to say so as if it will jinx the run of joy ! Then that annoys me too as I'm more an optimist than a pessimist of defeatist. I try to see the best in every situation but that's sometimes impossible even for me and my halo. I have recently been writing happiness is......posts on Facebook. I'm not sure why really, maybe to remind me that it's the little things in life all added together that make you happy. That a day cannot be written off because of one bad thing that happened. Sometimes I just need to remember to smile, smiles like yawns are quite infectious. Who wants to look at my miserable face all day long ?

      So this week Tuesday started off like many others , chaos in the kitchen , and a mad dash to get out of the house on time. Eloise and I dropped Henry off at breakfast club as she had a repeat Tacro level scheduled for 8.30. On the way though she complained of a feeling of pressure on the left side of her chest not pain more like pushing. So after the blood test and a discussion with my lovely work colleagues we went to A/E . With the damned if you do, damned if you don't approach.  We couldn't fault the care Eloise received. We were in hospital for 6 hours. For an anxious 15 minutes or so I was worried she was being admitted as the emergency department SHO crept around to cardiology with Eloise's belongings and a hospital nameband etc. At the same time the cardiology registrar decided to shut the door and be in a long discussion with the cardiac tech who performed Eloise's echo ! Stomach was in tight knots and my mind was in overdrive, even Eloise was worried she'd be missing out on scampi for dinner ! In the end no reason for her discomfort could be found just all serious possibilities were ruled out. So euphoria after despair and a reminder of how things can change so quickly in the life of a transplant patient. When you get good news you feel like celebrating, there is no feeling like it. Please don't get a serious or life limiting condition to feel this wonderful feeling of reassurance just trust me on this ! 

                         

   Then on Friday I heard the sad news that a young lady had passed away waiting for a second heart transplant in Papworth . Her mum and sister are part of my heart transplant support group. I have never met them but you still feel the ripples of grief. You try to find words of comfort for them but they never seem enough. We try to support each other. I cried on Friday when I was safely at home, before that I managed to control the lump in my throat and the tears pricking in my eyes. I cried while cooking the children spaghetti bolognaise, I'm sure the extra salt won't have harmed them. I'm never afraid to cry sometimes I feel I need to. I see crying as a release of stress and that the tears help me recover from feeling emotionally distressed and overwhelmed. On Friday I felt very edgy, I describe myself as prickly , I don't really want to interact with anyone on a deeper level when I feel like this. I think this is when I'm better off being on my own but that's not always possible. Last night there was no chance of solitude as I had made plans . I remained prickly for 24 hours until Saturday afternoon when I got to go for a nice long walk around the Harbourside on my own, just me and a camera . Then after eating dinner with the children and watching some family TV I retreated to my room to listen to music and enjoy calming, relaxing candle light. Today I'll spend the later part of the afternoon at the gym, I think a swim will help. I often need water to feature when I'm stressed. I'm repairing myself and it's very important.

                               

  

   I think the grief I feel for these "strangers" is heavily mixed with the grief I feel for Eloise. We are losing these people in our transplant world because of post transplant complications and it could happen to Eloise. I am mourning "normality", I'm mourning the fact that she'll never be cured, I'm angry. Even though Eloise is very much alive I am experiencing loss, I feel dread, guilt and anxiety regularly. I try to cope, I do cope , I'm lucky. Grief isn't just about dying it can be triggered by the loss of anything as well as anyone. I'm grieving the loss of the healthy child I gave birth too and nurtured for 21 months before myocarditis took hold. Even saying that I am grieving makes me feel guilty as my child is still alive, her donor isn't. Eloise was so close to death, less than 24 hours to live when her transplant call came. I know my Warrior Maiden has plenty more fight and life in her yet. I'm determined to spend more time with Eloise this year, not easy when they're 15 ! We had a great time climbing over the O2 together, we both enjoy musicals so we have a few more of those booked, and next month we are going to do a Jungle Jump ropes course . Then I'm being dragged unwillingly to the Harry Potter thing and Hampton Court in August ! 

                    

Through all of this one thing always remains with me and that's Hope ❤️

                                  

      

                 

     

Feeling of Impending Doom.

         

  

For the past few days now I have just not been feeling right, I'm not physically ill so I'm guessing this is something psychological , but what ? I have a feeling of impending doom but I don't know why. Like something looming over me but what ? I'm sort of waiting for something to happen, something bad I suppose from how I am feeling . 

I keep running through things in my head to try to work out why I am feeling this way and I have not uncovered any answers. Nothing is different here, no new worries, nothing major hanging over me. I just wonder if I fear saying I am happy and that life is good incase it's snatched away again. That another sink hole will appear to swallow me up and leave me hanging on by my finger tips . 

I am having insomnia again, waking multiple times and struggling to get back to sleep, this is frustrating but not that unusual for me and I don't feel it is responsible for my feelings of impending doom. I'm waking up though with a churning stomach, it feels twisted and I have a butterfly feeling . This feeling is travelling up to my chest at times and I feel the need to take a big deep breath. My palpitations are also back and I feel like my heart is in my mouth. I feel dizzy and off balance and just not myself. It's such a weird feeling and I don't know how  to make it go away.

   I'm still racking my brain trying to work out why I feel like this, wasting time going through a "list" in my head. Always starting at Eloise, who looks well, feels well, we are waiting for blood results and she does have an appointment at the end of the month but it's too early for pre-appointment tension ! The other children are all good as well, all healthy and happy and progressing well. I have no health issues either I had to have a colposcopy in February but had the all clear so no outstanding results to worry about as my moles were also cancer free. Parents are behaving themselves, a few health issues but under control. Divorce situation is dragging on but still amicable and nearing the grand finale ( I know I say that every time I write) House is ok, no major money issues, work is work. So why am I feeling like this ????? Why do I feel like life is going to come crashing down over me ? I want this feeling to stop, to go away, I want to be free from it again. I think what is unnerving me is that everything is ok but I feel strange . 

   Am I like this because things are going right ? Life is being kind and I like it. I'm getting used to it but I worry about something bursting the bubble. It's like I cannot be this lucky and I'm scared. It's not that I don't feel worthy of happiness, I feel we all deserve to be happy.  I'm just waiting for the next drama or upset, so I shall adopt the brace position. 

                    

   All I can do is try to ignore these feelings by keeping myself busy and not allowing myself time to over think, so I shall plan a few activities over the next few days. I'll use my usual relaxation techniques and gym trips to keep my mind as balanced as I can. I shall be gentle with myself and enjoy all I have. It's probably just the menopause !!!! At my stage in life I guess I can blame the big M for many things. So feeling of impending doom you won't bring me down as when the going gets tough the tough get going............😉

             

PS - If you are walking over the O2 with Eloise and I tomorrow (02/04/2016) please don't be afraid I cannot see into the future and I am not fearing any major disaster ! 

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 ?