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.........