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 ?