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 ?

Friendships

Friendships - tricky things aren't they ? You think we'd be good at this friendship thing as we get older seeing as we've been making friends from an early age. Maybe it's because our expectations change and how we view our friendships.Major Life changes especially in my experience negative ones can often lead to a shift in friendships well any kind of relationship to be honest. I remember the online "friendship" explosion that happened when I told a large forum of women about my husband's affair , anyway I digress.  I have a small core of people in reality who have been there through the hell, I have more that couldn't take the heat . But their leaving opened up opportunities for new friendships to be made. Through the worst of times you usually realise who is truly there for you. Now as we are lucky to have the Internet and social media you can often seek out a group of people who become friends to you often the best of friends . Some of those because of the geographical distance between you remain cyber friends, others you can meet in reality. These friendships are important , these people are often in a similar situation, they totally get "it" whatever "it" maybe. A unity of experience. 

Friends are a really big part of our lives . Their influence is significant, so it’s a mistake to underestimate their effect on our happiness and self-esteem. I think I used to be more tolerant of people , friends, before Eloise's transplant. I think I was a more caring person, I had that time and the capacity to not drown in everyone else's problems. Afterwards things changed within me, I realised I needed to choose the people I spent time with carefully . I couldn't be destroyed by toxic friendships. I had less of myself to give. It's hard to pull away from friendships but you have to sometimes for self preservation purposes. 

    What makes a friendship toxic ? For me it was when someone exhausted me, drained me leaving me on empty. Sometimes I just dreaded seeing them face to face. Knowing I'd leave the meet up feeling I'd had the happiness sucked out, they made me feel bad for being happy. Often the same person would be quite critical . Also the conversation would have been so miserable and all about them. Some people it seems can't bear to see you happy, they prefer the downs and dramas in your life. Maybe they like soap operas 😉

Sometimes our friends are only semi-toxic or "difficult" I guess most of us are ! If on the whole a friendship is good it should be nurtured and put back on track. Then I try to be understanding and appreciate where my friend is coming from. If you have a good friendship you can tell each other what's bugging you without any major dramas! That usually works !!!! If it doesn't it's just oops another friend bites the dust ! Or a bit of a sulk.......

I like to speak my mind these days, not sure it's because of my age , I'm at the grumpy old woman stage ! So for me straight talking and honesty are the best options. It might not always be the best for those on the receiving end but at the end of the day I'm giving them my opinion. We are all entitled to that as we are also entitled to disagree. I feel no obligation to say what people want to hear, they get to hear my thoughts. I feel if you have come to me and asked for my opinion that's what you deserve, my take on a situation. So your problem, issue looked at through another's eyes. If you don't feel comfortable with that don't put me in that position, that's playing fair. Sorry friends !!!! If I have any left that is.

    Friendships are wonderful things if you nurture them, I'm lucky to have some wonderful friends who accept me for who I am. I'm not sure I could always tolerate me but you do and I appreciate everyone of you. Some of you poor buggers know more than others sorry if you've been chosen ! I'm hoping the chosen few know that I'm there for them 100% and I love them. Just know that I have chosen you because I trust you with my thoughts, fears, past and my dreams for the future. 

The Fragility of Life

Life is fragile appreciate it.

       

I think we are all guilty of taking life for granted until that moment someone or something tries to snatch it from you or your loved one. Think about it we take most things for granted , we have forgotten the true value of life. Without life nothing else is relevant or possible , funny that ! Life is special, a gift to be treasured, shared and enjoyed . A healthy , carefree life is a precious gift indeed.

       We must be thankful everyday , find contentment in all we have and be happy with the people we have in our lives. Life is fragile, one day it's stable but in just a second, minute, hour, day it can flash before your eyes and be destroyed and taken away.  You know I've experienced that and I know many of you reading this will have also. Tragedies can occur any time, fatal accidents, illness, murder, no organ donor.......Then what happened in Paris last night.

                                                                  

                              

        

   All those people were out for the evening, enjoying life, out with friends and family, for a meal, drink, sporting event or concert. They weren't doing anything wrong, just innocent ordinary people. People just like us. Their lives snuffed out or changed in a split second by being in the wrong place at the wrong time. This was out of their control, there was no warning. Their lives were taken from them in a brutal way. The ripples of this tragedy are touching us all today. They were real people someone's loved ones. See life is fragile. 

      I'm just as guilty as the next person for not appreciating all I have, God I have a great life, lovely family, beautiful house, friends who love me.....I really shouldn't let a bad day bring me down, obviously discounting Eloise's precarious post transplant health from this ! I'm talking about the small niggles and arguments. We're all lucky and I think if we were all a bit more positive and a hell of a lot kinder to ourselves and others we would benefit. This week we have put together our Christmas gift bags to donate to a homeless project and gathered a few more things for a friend to take to a homeless shelter. That felt good, positive and worthwhile. Doing that made me happy . It was meant to be World Kindness Day yesterday after all. 

What really matters in life ? We preoccupy our day with technology, we fill our day with worries , we get angry about the wrong thing. Life becomes very complicated, maybe over complicated ? We need to make it simple and enjoy it. We should learn tolerance, we're all different and that's ok it would be a boring place otherwise . We shouldn't let others bring us down effecting our mood or mind. Again I'm guilty of that, I over think everything, every conversation, every text, often creating a problem that never existed. Then getting mad at my foolishness ! So make time for those you love and love being with. Let them know you love them, tell them, hug them close. 

    We get engrossed in our own lives, again I feel I'm often complaining, whiny and dissatisfied. Hands up who moans about their jobs, lives, days, their home, their kids or their partner ? If we are honest we all do. We need to stop being so negative, I appreciate life's no Disney Fairytale and I'm no Mother Theresa but I'm sure we could all find something positive in every day ? Try it. 

I don't watch the news normally, bit of an ostrich really. What I don't see can't touch me kind of thing. It's because it only focuses on the bad news, the horrors going on in the World. I guess it has to but every day wonderful things are happening to. The stories that restore your faith in human nature. How many times have you been out with a friend and only talked about your problems ?  Please don't be scared to be happy, I sometimes feel I don't share all my happiness worried it will be snatched away from me or I've interpreted it wrong and I'll look stupid. 

    Maybe we all need to remember You Only Live Once, one chance at getting things right. So let's try to appreciate life and enjoy it gather than letting it trickle through our fingers. Before you know it life has a habit of passing you by. Life should be a collection of experiences , memories shared with the people you love. That's all there is to life really if you strip it right back to basics. We've made life complicated, well those of us who have moved away from being cavemen ! 

    It's sad really that we need reminders of life's fragility, Paris tragedy, Boston, 7/7 , 9/11 to sadly name just a few. We're not invincible though my transplanted friends are superhuman and have more than one life ( that's different !) None of us are here for ever, our time will be up at some point and for many of us we won't know when. So live every day as if it's your last, enjoy it with no regrets.

Although I don't want to I'm trying to make my peace with the thought of death and dying. It's a scary thing death, not my own death but the death of those I love. I have struggled with death before and I know I need to find peace. Death is the only certainty in life so perhaps we should talk about it more. Talk about those we have loved and lost. To not be afraid to mention the name of someone who has died with fear of upsetting their loved ones. Not mentioning them hurts more.

       

  

   So what's the point in not enjoying life ?  Be grateful for it, in my transplant world people are dying waiting for an organ transplant they're desperate to live. Live for the moment my friends and that moment is now. 

The Art of Saying NO

Learning to say No 

Who has learnt the art of saying NO ?

                               

      

I feel very guilty when I say no to people , when I don't go out of my way to meet them or at least their expectations of me. It's just so hard, I feel mean and worry that they'll feel I'm not bothered about them. It's like you are rejecting them and not being a good friend. However by pleasing them you're not thinking of your own needs. 

     But now I'm sat here , the extended half term break is over and I feel more tense than when it started. I should be relaxed ready for the working week ahead but I can feel the sore tension in my shoulders, my throat is sore and I feel like a cold maybe brewing. I guess I have burnt myself out.  I want or need breathing space but it's not going to happen, I've left it too late it's Sunday Evening . Tomorrow the wheel of early starts , school runs and working days begin again. I'm not sure going to work in the dark and returning in the dark will lighten my mood either ! Please be reassured I'll try my best to be sunny and upbeat and not a grumpy old woman. 

I shouldn't complain I'm only in work two days this week but the early starts happen every morning. I'm also going through a period of insomnia again, my mind in over drive and full to bursting. I've tried that talking to a fellow human being malarkey this week it works to a point but I feel I understand myself better than anyone else ! I just don't feel the need to share all my thoughts as I often find other people's opinions attempt to cloud my own thoughts . Things then become more of an issue. Anyway this wasn't about my sleeping pattern......or my inner turmoils ! 

    Saying no, it's my fault, I need to man up and say enough now I need space. I should have kept one day for myself. No running around, no appointments, no meetings, phone calls, no changing plans, nothing grown up. Maybe just a day of daytime TV, magazines, the Internet, cake and copious amounts of tea. Might as well add in comfy PJ's and a blanket on the sofa. Anyway no good dreaming now. These things will have to wait. I'm not saying I didn't enjoy the school holiday I did , always nice seeing friends......and eating. I just need to remember I'm important too, I matter and if I'm functioning below par that has a domino effect on the rest of my family. 

    So the best I can now do is candle lit bath, music and an early night. Saying that though I've been asleep at 9.30 for the past two nights. 

   I will learn the art of saying no before the Christmas Holidays ......maybe ? Probably not I think even more people will want a piece of my attention then !  

         

    

Strength

      

"You have to be strong" ever said those words either inside your head or to another ? 

Why do we feel the need to always be strong ? 

What is wrong with releasing our true feelings and emotions ?

 Does breaking down make us less of a person ? 

Is this the English stiff upper lip thing ? 

By being strong are we sacrificing our own mental health to make things easier for others ? 

      Just a ton of questions to which I don't have the answers for. There may not even be an answer or there might be multiple answers. It's all personal , all relevant to you and your situation. 

   I'd never label myself as strong, but a few people I know say I am. I just get through life in the best way I can, to get the best out of it. Things aren't always easy, I have worries and fears but I cannot let them control me and sap my happiness taking the enjoyment out of all the good in my life. Can't be unhappy when you've got 4 lovely children, a potentially beautiful home, lovely family and friends and a plentiful supply of tea and cake ! 

       

                                    

    

   Believe me I'm not strong , I don't feel I'm weak either just average. I just cannot let my feelings gush out all the time I'd probably drown ! That doesn't mean I'm blinkered it just means I'd built a dam to keep everything in . Then a couple of years ago when Eloise was ill the dam burst. I found the right person to talk to, the right support. What I had for so long resisted and avoided had caught up with me. Yet I felt no shame or embarrassment. I felt no anger with myself or disappointment in my supposed weakness. Instead of feeling defeated and vulnerable I felt free, lighter, more positive, it was a wonderful release, after I felt more at peace. So now when the feelings are building up I either have a little chat with someone close or close the bathroom door and write things down in this blog. You're my audience my sounding board, my therapy and it feels good. When things are bad I no longer feel alone or struggling. This blog is a great release.

                      

    

I guess when I was trying to be strong I was denying myself the feelings I needed . I wasn't allowing myself the freedom of being honest, I wasn't admitting that I needed support. I was worried about burdening others with my fears when many of my friends are going through their own hells. I know I'm always banging on about my heart transplant family but I guess it's what happened with Eloise that's given rise to many of my feelings. Actually it's very much ongoing, it's nearly appointment time and the last Gosh echo showed slight changes . First of all I was very worried but I was reassured by her consultants words "very good heart function"  Hoping she remains stable . I'm in self preservation mode at the minute, back to writing, baths, candles, music and hypnosis and I'm doing ok. I know you have to look at the test results and tweak treatments but you also have to look at Eloise and the amazing quality of life she has right now. I'm going to look at my happy smiling girl and be inspired. 

This picture was taken last week when Eloise wanted to know what was the point of lettuce....."it's just a leaf!"

                                    

I suppose too often, we build walls around ourselves in the midst of grief, pain, or challenges. We don't want to appear weak or worry our friends and family. I always want to protect those I love from the full truth if things aren't great. I guess we want to appear as people who don’t need anyone’s help, people who are getting by just fine, people who are strong enough to weather the storm on their own. But now I have opened up to you, you know the truth. I'm only human, and as I said in my last post we all have a breaking point......thank goodness for Elastoplast ! 

     I might have a strong shell but I have a soft middle, see I'm a Minstrel ! Mind you if I'm not alright all that you need to ask me if you're face to face with me is "are you alright?" then the lump in my throat grows and I'll cry ! You've been warned ! 

I'm so lucky to have so many beautiful people in my life ❤️

                                      

Breaking point? I'm only human.

I'm sure how much content this post will actually have or if it's worthy of being written but I'll start and see how things progress. This weekend I felt for an hour or so that I was at breaking point, I'd had enough of being strong since my marriage break up. Thankfully by talking things through some of the despair lifted. I felt like screaming like a toddler and shouting "Fuck You!" Not very lady like I know but sometimes cursing helps ! I guess I just want to share with those of you who think I'm strong, I'm not, not really maybe I just wing it better than some. Ahhh that's where Eloise's and Millie's acting talent comes from ! 

      As many of you know it's nearly 4.5 years since the break up of my marriage, well it's now a year since I consulted a solicitor as instructed by S to represent me and my best interests during our divorce and financial settlement proceedings. Well what an expensive year of going around in circles and jumping through hoops for both me and S. It's just been so bloody frustrating and time consuming. Well this week things nearly came to a head as we were both being pushed by our solicitors. We had both of them threatening mediation and court something we are determined to avoid. I feel they've driven our ideas for our financial agreement further apart, I guess they want to get more money out of us.  

     I appreciate my solicitor is trying to get what's best for me and that S's solicitor is defending this but it's threatening to destroy the relationship we still have. He's not my husband, my partner or even my friend but he's the father of my children and we remain a family. We can talk , laugh and go out with the children together occasionally. I got very upset on Saturday trying to discuss the latest letter from my solicitor and for the first time since the early months I cried in front of S . In fact I felt really odd and faint , S even offered to make me that cure for everything a cup of tea ! Im being honest now I've had enough, I'm at breaking point . The cynic in me will always wonder if that's what S's solicitor wanted , to squeeze the fight out of me. The nicer person buried deeply inside me would dismiss this thought. I don't need this extra stress in my life. I feel I manage my stress quite well and I cope but it would be very lovely to take this weight off my shoulders. 

         

        We need this sorted now, home life needs to move on , I need my financial independence so I can make changes and decisions regarding the up keep of our home etc. I feel all home improvements have been on hold in case I can't afford the work. I want security for myself and the children. S wants that for himself and his partner too. So we'll tie up the lose end, yes there's just the one sticking point.  Quite a big one I guess spousal maintenance , S's solicitor said none so mine got a bit carried away, I've no desire to bleed S dry ! I did explain to S my thoughts on this payment. He'd initially said once Henry was 11 I could work more hours, so no more spousal maintenance payments. Yes perhaps I could but I have to think of Eloise's needs and her health in the future . If I took on more hours and she became unwell again like she did for a year two years ago I'd find it hard to juggle the increased hours and not let my work colleagues down. I managed to stay afloat last time. I feel I'm better doing the hours I do now and adding in an extra bank shift if money's needed. I don't like thinking worse case scenario I cannot allow myself to be pessimistic but occasionally you have to be a realist , I may one day be Eloise's carer. However the optimist in me says she'll care for me ! I think I've given S a fair insight into how life can be . Funnily enough it's not all trips to the Cinema, bowling, crazy golf, boxes of Lego, Hotel stays and TGI Fridays ( well just every other weekend) 

  I started the year optimistic that this would be the year my divorce happened but now it's not so likely unless we get this moving super fast now. 

  

     Tonight we've made our financial settlement plan, it's no real surprise that it's not a lot different from our original thoughts . Copies will be sent to our solicitors , it's time for closure and new chapters to begin. I'm hoping for some relief once this is over. Looking forward.......

Birthday Reflections

  

       

      

Yesterday it was my birthday, I'm not really one to go all out on my own birthday. As a child they were always good, but as an adult less so. Over the last couple of years there have been a couple of bad ones, 2010 S forgot, no cards or gifts, that felt horrible, obviously his mind was with his mistress. Then in 2013 we were at Gosh and Eloise was diagnosed with rejection for the second time. Felt so sick and worried about her, so birthday thoughts and cake were forgotten. 

So here I am another year older but no wiser ! I'm wondering when I'll feel "grown up" ? I look at my life and the responsibilities I have, my four dependant children, my home, my finances and my job etc and think how did I get here, I'm not old enough or adult enough for all of this ! Stupid I know I'm 46 now, creaking ( quite often ) nearer to 50 ! 

       

        The number itself doesn't worry me, it's just that a number, I feel no different today than I did earlier in the week, I didn't suddenly age.....it's just a slow decline. Do you remember waking up on your birthday and looking in the mirror to see what you looked like another year older ? Being excited to see yourself at the ripe old age of 7. I can't say looking into a mirror thrills me these days, post make up not so traumatic, pre foundation scaffold quite horrific . There's something to be said about not putting my contact lenses in too soon, blurred reflection. I have just reached the going ever so slightly long sighted age, thankfully I can sort that out with varied focal contact lenses, phew. I love sunglasses but I'm not keen on glasses preferring the normal surround vision I get from my lenses. 

    I fear I will be one of those old ladies that falls over and breaks her hip, I think I trip up nearly every time I go out. I wonder if I was a child again whether I'd be diagnosed with dyspraxia ? I have always been clumsy. So maybe I should start some kind of calcium supplement ? I'll put that on my to do list, I often scan the bottles of vitamins and minerals in Boots then I walk away empty handed. Too confusing an array ! 

    I don't think I have ever been one of those people with life goals, ie before I'm 25 I want to be engaged, by 27 married, first child before I'm 30 and so forth. So I've no idea where I thought I'd be at right now. I doubt I'd have said divorced, but then if you thought that you'd never bother getting married . Otherwise I guess life is in the right place. I expect I'd have thought I would have achieved more of a nursing carer. It's hard to know whether I gave up on career progression because of what happened to Eloise or if I never had it in me anyway. Perhaps a bit of both. I wonder if I should have chosen a different career pathway, I guess I was shoved into nursing post school work experience. Don't get me wrong I've met some amazing people and there have been plenty of rewarding times but now I'm unsure what to do next. It's when I think I've still got another 20 years to go, can I keep on nursing ? On the other hand I know nothing else I've been nursing since 1989. I have no other skills, some of them will be transferable skills I guess. 

     My life on the whole has been good, I'm sure if I didn't have the worry and the stress of Eloise's transplant I'd fret about something else. We all have worries don't we. Just with health it's pretty much out of your control, especially when there's no cure and treatment causes more issues. After never getting a cold while on azathioprine Eloise has had a few on MMF which is a shame. Like she said though a cold is better then rejection, such a wise child ! She's been off school for two days battling another virus, thankfully she's better now. I try to remain happy but it's a pretty constant worry with Eloise. She's not made my hair go grey yet , well the blonde is covering up the white. 

  How can I worry about getting older when it's something denied to many ? It's a privilege isn't it, every day a bonus. No one knows what's around the corner, if we did we'd probably sit back and give up. When you are confronted by a truly difficult situation head on you fight it, it's in everyone of us the passion to survive. So I'd better get a move on and prepare for battle. Today's battles should just be small ones......anyone want to take Henry shoe shopping ?

      

                                      

The Wait

Waiting - 

                       

   What type of person are you when you're waiting for something to happen ? 

Are you inpatient ? 

Do you remain calm ?

Are you excited ? 

Are you scared ? 

Do you remain positive....hopeful ? 

What if the wait is prolonged with no end time ? It could be days, weeks, years or never as time could run out. 

Could you live like that ? 

This is how it is for those living on the transplant list.  They are in limbo , lives on hold, not just their life but the lives of their close family members too. Not only are they waiting at the same time their health is deteriorating for some the deterioration is slow for others its rapid leading to multi organ failure and they then need hospitalisation and life support. Then the family becomes split. This then makes the wait even more unbearable . Also you know time and options are running out. It's a daily battle to keep the person "well" enough to receive a transplant. 

My family was lucky we were spared the wait as Eloise was transplanted 24 hours after being listed. From diagnosis to transplant was a short sharp three weeks. No time to think too much, to ponder the ifs , whys and maybes. I didn't appreciate then how lucky we were, why would I things were pretty hideous. Now I know we were spared the gut wrenching wait. I know when we were at the Freeman pre transplant they asked if we'd like to meet another family, one with a post transplant child. We declined, deciding we didn't need to learn about something that might not happen for us, an organ might not have been available for Eloise. 

Now I've been a spectator while other families have waited for their loved one to have a transplant. It's hard to find the right words to say sometimes, to give words of encouragement and hope. It's hard watching little ones fight so many battles to survive, children the same age as Eloise was. Seeing them covered in wires knowing only another family can save them by donating their child's organs. No one wants to think of a child dying it's not the right order in life. The wait can have other implications , daily life comes with expenses . People have mortgages, homes that need maintaining, bills to pay, families to feed etc. This just adds to the worry. 

It's not as if a transplant can be scheduled in , it must be hard waiting for a cataract operation or a hip replacement both debilitating but you can be given a date for your procedure. You're not only waiting for someone on the organ donor register to die and their family to say yes. You're waiting for your match. Blood Group, Tissue type, organ size etc all have to match and you need to be top of the urgent list, oh and stable enough to withstand the operation. The odds just seem stacked against you. Thankfully for most of my #transplantfamily the call comes in time, as a group we've been lucky but occasionally luck runs out. Recently we have learnt of Mr P his wife joined our group after he passed away waiting for a transplant call that never came. We also followed baby Willow's story and sadly she too passed without receiving a heart transplant. It makes us realise how lucky we have been , lucky that our loved one received an organ just in time. 

      So thank you to all the amazing donor families who have spared us grief when they were grieving. I hope you all know how much you mean to us. We remember your loved one and live life to the full, looking after the gifted organ. 

                        

    So think about it decide if you or a loved one could survive the agonising wait knowing that 17 million people haven't made their decision about organ donation. Knowing only 31% of people in the UK have signed the organ donor register. Knowing 3 people every day die waiting for an organ, real people not just statistics. I'm sure if someone you loved needed an organ transplant you'd be here campaigning with me, you'd see how desperate it can be . You'd see how frustrating it is that 96% of us agree with organ donation in principle then for whatever reason don't bother to sign up to the register. I just cannot understand why. Dead is just that , why not spare someone else death when your own death is inevitable ? Please help me get more people on the register #onemore person can potentially save 9 lives. I know I've already got 6 people signed up this week so a few more would be great ! 

   Eloise's story could have ended right here 9th June 2002 on a ventilator at The Freeman Hospital in Newcastle. 

       

But her story continues ,13 extra precious years, and each year is another chapter.........

      

Commitment

Commitment - 

       

Yesterday I started to wear a very beautiful ring chosen for me by my boyfriend Warren. It's white gold and diamonds made special as he selected it for me without my knowledge, cunningly taking one of my Pandora rings and getting my ring size from that. 

                     

      

        We're not engaged, it's early days, we have time for that if it's the right path for us as a couple. At the moment we have no engagement leading to marriage plans. No cash either if any of you would like to start a "Go Find Me" page. I can provide the love story and Eloise's story to increase public interest......please note this is my attempt at humour ! 

Why bother with a ring then? For that answer you'll have to ask Warren it was his lovely idea. I didn't need the ring to know how much Warren cares for me, he's always been very open with his feelings where as I'm more of a closed book. I guess by sharing the pictures of us together and the picture of the ring you also know how much he loves me. I struggle more with the showing emotion thing and I don't make so many open declarations but that doesn't mean I don't care.

       

           Between us we have three failed marriages and at the moment two divorces until mine is completed. We have both gone through marriage breakdowns because of adultery. So for us to have trust it's a big, no huge deal, the be all and end all of our relationship. I know we cannot judge a new relationship on past ones but it's hard not to be cautious, to protect yourself you hold back. Yesterday while walking around Bristol we saw three or four Weddings taking place, everyone looked so happy . I hope they have all found their Happliy Ever After.

         We are content with what we have right now. As we have time with just each other as a couple, time with my children being a family , time with our individual friends and hobbies and time alone. A perfect mix that's working well for all of us. So I'm not ready to unbalance all of that . It's hard for a bachelor to fit into the busy, hectic life of a single mother of four but Warren's doing ok. It's not always easy, I'll be honest the kids especially Henry can stress Warren right out. Amazingly he's managed to give up smoking and now vapour as well !  This family conflicts can lead to some tension but I guess that's like any family, blended, step family etc ? We work that though until calm is restored. Warren won't replace the kids dad, he doesn't need to but he can spend quality time with them as well. I think my children and Warren get something out of knowing each other. My children will always come first in my life and Warren after them .I'm entitled to my own happiness as well and I have enough love for them all. 

          If Warren and I stay together it will be a natural progression that he'll move in with us as I have a family home. So therefore we have to get this right for all our sakes. We aren't ready for that. I'm sure though my Ex will be rubbing his hands in glee as if we cohabit it means he can cut back on the maintenance money . So at least one person will be happy for us 😉. 

        

        

   So thank you lovely people for your congratulations it really does mean a lot to both of us and we do appreciate all the support we have. I'm glad you are happy for us, as a sensible friend just posted on my FB "Life's too short to not be happy " 

                   love you all lots. X