Christmas -Handle with Self Care

Christmas Handle with Self Care.

       

Christmas isn’t / wasn’t for me. I guess I’m not alone and for every person who gets excited for Christmas there’s another like me taking a deep breath and hoping it’s soon over. Don’t get me wrong as I do love aspects of Christmas, sparkly lights (who doesn’t love them!), the Salvation Army playing Carols, coming together with friends and family and sharing the Lindt Balls.......maybe not that ! I do tend to get run down at this time of year and catch a cold then add in general exhaustion. This year I had to forfeit a wonderful night out with friends so I was well enough for the big event Christmas Day.  Christmas feels like one big rush in the end after it starting to pop up in September, you can’t do the bulk of preparation until the end. Even present buying as children have this habit of changing their minds ! There’s the running around to buy presents and wrap said presents, buy the tree and decorate the house, write Christmas cards (if you still bother), shop for all the food, and then slave in the kitchen on Christmas Day, thankfully my mum is the main chef and I’m a kitchen hand. . It is such a busy period, for some of my friends it involves visiting different parts of their family for different meals, or over different days and that can involve a lot of travelling. Christmas just isn’t my kind of relaxed. 

                                                Parts of the run up to it I enjoy especially visiting Christmas Craft fairs and markets, actually that’s probably the only bit ! I often stand there during the weeks before the event wondering what the hell am I doing, I know nothing unusual there ! My lists need lists to stay ahead of the Christmas game and organised. I just find it all a bit crazy this mad dash for one day, one extreme roast dinner and the giving of sometimes unwanted gifts just because..... Actually I stopped that this year, decided no more going around in circles in Town until I was inspired to buy something vaguely decent. So therefore if you didn’t volunteer gift ideas you got the cash cop out ! Food shopping, why does my dad have to have a jar of pickled onions and a jar of beetroot ? Why do we need a huge selection of soft drinks when 50% of the household normally drink tap water. The cheese board when we only usually have cheddar, the selection of crackers when we usually have Jacobs cream crackers. On the point of crackers (the pulling kind), I forgot to buy any, oh my god, such a huge festive crime. Which led me to scouring the shelves of many shops after work on Christmas Eve. I eventually found some I was prepared to pay up for. Let’s just say there is a tray in the dining room with ten unwanted plastic items from said must have crackers !!!! Why have we gone so crazy ? Although I did wander what happened to all the unsold Christmas trees outside Sainsbury’s on Christmas Eve, just 24 hours later I walked past and there was no trace, well a pine needle or two. Oh and the supermarkets are now reminding me that it’s nearly Easter ! It’s like Christmas never happened but it did and it took most of December in its jaws too, swallowed up in the frenzy. Actually that may have been work that did that, I did work a couple of Saturdays !  

     Over Christmas I really, really miss my space as I have to surrender my bedroom to the old folks. I have to share a room with someone and listen to them breathe all night while I battle insomnia and need the loo, ahhh yes I miss my en-suite ! Oh and I live with white noise addicts and I’m the only one who sleeps without a fan. Over Christmas I miss my routine, I miss my walks, my gym trips, my swimming and my aqua aerobics. Those are the things that help keep me balanced, they provide what I need. It’s all about self care with me, otherwise the cracks begin again. Christmas provides me with too much thinking time without offering any respite. No going to bed when I want, no long baths, no candle lit bedroom, no getting lost in a book, in its place sitting around in front of the TV making polite conversation. Those that know me , know this isn’t me. I rarely switch on the TV, I hardly ever spend any time in my living room. I have the attention span of a gold fish.  So I find it a huge strain. I stay ok because I work hard at being ok, does that make sense ?  Going to work on the 24th and 27th helped, it broke things up. 

     We have all had enough of the party type food and want simple meals again, it’s like being on holiday and eating out for two weeks, you crave a sandwich or a piece of toast. I’ve had enough of all the weird food combinations because things need to be used up, trifle for breakfast is acceptable during this week of post Christmas weirdness. We are nearly over all of that so it’s obviously time to mess things up again with New Years Eve and Day. I won’t stay up to see the New Year in unless I suddenly stop waking up at 4.50am every day ! My 50th year, I better think of some unobtainable New Years resolutions to fail at !!!! Nah why bother ! So there you are my post Christmas muttering, I’m either bah humbug or I’m just honest, you can decide. ❤️ 

   Wishing you all a Happy and Healthy New Year 2019 ❤️ lots of love Bec ❤️

                                         

    

          

Happiness- Love the Life You Live

Love the Life You Live - Happiness

   Happiness, I think you choose it. I like to or have to remain positive to get through certain aspects of my life otherwise the sadness would consume me. I just find it easier choosing happy, it helps me adjust my mindset and determines how I interpret what’s happening. Choose to be happy. Choose to push away negative energy. Choose to be happy rather than to suffer. I like to see the good in everyday, everybody and everything. Of course that doesn’t mean I always find the good in people or situations that I find myself in but I like to try ! Only you can you make yourself happy. I would advise not relying on anyone else to make you happy. If you aren’t happy with yourself, you won’t think you deserve affection and attention. So make yourself a priority.

 I like to find happiness in small everyday things , things that make me smile ahhhh Sheldon the Lobster, wearing dresses, eating cake, reading chick lit, swimming, earl grey tea in a gorgeous Cath Kidston mug, spending time with family and friends.......the list goes on. My far too many photographs document most of the things I love in life on a daily basis. I think my choices enhance my life and how I generally feel, I enjoy creating happiness.

       

I deal with life one day at a time , I recommend this as it’s easier to focus on the present, not yesterday or tomorrow. Now this is a huge thing for me, because of what happened with Eloise and a few other traumatic and unsettling life events I don’t look back too often. I cannot change what happened but I can change how I react to it. Obviously I do reflect, I do feel anger and great sadness but I deal with it as best I can . I just feel that time is now, I am here in this very moment. I don’t know what tomorrow will bring and that’s probably for the best ! I believe in staying focused on today rather than worrying about yesterday and tomorrow. I don’t want to miss out on the happiness that’s available to me right now.

 

The art of being grateful also plays it’s part. I like to try and turn negative thoughts into more positive ones. This is especially true when dealing with Eloise’s heart transplant. Yes it’s so bloody horrendous that a simple virus left her in severe heart failure but it’s a miracle that she received a heart transplant that 16 years on is still beating strongly. I’m eternally grateful for all those who saved her, especially her donor family. I think being grateful brings on a positive mindset change, a better way of thinking and dealing with life. Just my opinion and something that works well for me. Gratitude makes me appreciate all I have in my life, my beautiful family, fabulous friends, my home and all it contains, plus all the loveliness I embellish my life with.  So maybe take a look at all the happiness you already have in your life. Focus on the great things you have already and hug those beautiful people who fill your life with love and friendship right now. I hear people saying “I will be happy when…” I’ll be happy when I go on holiday , when its not raining, when it’s payday ,when I lose 10 pounds… but happiness comes from living in the moment. By putting happiness on hold until the future,you’re robbing yourself of precious moments. Love the life you live.

              

I like other people to be happy too, it’s lovely to make someone feel happy when they previously felt down. When you turn someone’s mood or mindset around by helping them, you can sense it and that happy feeling flows back to you. People like to be around happy people.Happiness and laughter are contagious. Even if I’m really stressed out, especially at work, I try to be positive and energetic because I know it will only bring others down if I am negative (except on Mondays when I’m not at my Sparkly best ! ) People tend to dwell on the negative and bring others down. It is best to choose carefully who you let into your life. I find my life is better if it’s filled with like minded positive people who lift me up and only want the best for me and themselves. It’s good to share and spread happiness around, it’s at the top of my to do list plus a sprinkling of kindness ! Look after your friends, nurture your friendships and show them they are appreciated. 

   Do more of what you like to do, make time for the things that make your heart sing. There is nothing wrong with self care and giving yourself time to just be. Free up some time to do the things that make you happy. I love making plans , especially planning days out with my children and my gorgeous ladies. The gift of time is one of the best things you can give yourself and those you love. We live in a busy World but we do waste time that we could use in a more positive way. There is always time that you can free up, you have a choice, choose happy.

                                       

      

                              

Full of Life

Full of Life ❤️

18 years 

216 months

936 weeks

6374 days

        

      

Happy 18th Birthday Eloise. For most parents they knew this day would come. They knew they’d watch their baby girl grow into a toddler, a young girl, a young teenager and onto being a young woman. Nothing has been certain here, no promises just statistics and a whole host of post transplant issues that showed us we were in for a battle. But we are a team and we’ve got here precious.

      I hope I’ve given you a life that you’ve enjoyed , I’ve done my best and always tried to do the right thing for you. It was incredibly hard deciding whether to put you on the transplant list. I guess being a paediatric nurse I knew some of what you’d be facing, the painful procedures being the most upsetting. Could I put you through that I wondered at the time. I wasn’t ready to let you go though, I never ever will be. I hope I wasn’t selfish when I chose to sign those consent forms , when I let you go to theatre for your heart transplant. I hope the bad days have been minimal for you , I hate seeing you in pain and even then you remain incredibly brave. Post transplant life has expected a lot from you and you’ve never given up, you’ve never said “why me?”

                                  

     

      Life is cruel and I wish you’d never learnt that at such a young age. I wish you hadn’t been pushed into a world where your young friends die. I can’t protect you from the harsh reality of post transplant life as I chose not to build a bubble around you. I decided to be truthful from the onset, whether I got this right I don’t know but I think it was the right decision, do you ? I admire your strength and how you get through the toughest of days without any drama, we could all learn so much from your quiet determination. 

          I didn’t dare imagine this day but at the same time I wanted it so badly. All those growing up milestones that people are scared of because their baby is growing up I’ve been desperate for you to achieve them. Life has gone fast, can it really be 18 years since my Warrior Maiden made her 8 week early entrance into the World? I held you in my arms so briefly and then you were whisked away to Neonatal Intensive care. I’ve never got used to handing you over to strangers and leaving you. However I’ve had every faith in all the medical teams that have played such an enormous role in your life, maybe they should get the birthday cake ? 

       

         So here you are another wonderful year older, possibly still none the wiser as you often hang out in Weasy’s World ! I know you still feel like a child but you are evolving.....slowly ! Change from adult to child doesn’t happen in one day and you’ll adapt. In the meantime I’ll carry on dragging you along and helping you with your hospital appointments etc. Remember you’ve got a lot more to deal with than your peers and it’ll always ok to ask for my help. You’re an awesome creature, who had an angiogram done awake and did so well despite being so very scared. You could have said no, you could have bottled it but no you endured it as you’re that kind of person. 

              18 years, 16 of those a gift from Zara’s family, the ultimate gift, the gift of life. The gift that money cannot buy, a priceless gift from a stranger. We are celebrating today because of their decision and their bravery. Zara is a huge part of our lives and we never forget her. We are so lucky to have Zara’s family in our life so they can watch you grow up too Eloise. I’m so glad you’ve know met Zara’s mummy the time was right this year for you both. 

                                  

        So Happy Birthday precious, can you get a chocolate hangover ? I’m sure you’ll be overindulging in huge slabs of Colin the Caterpillar cake. Enjoy your day Batgirl 

    Loads of love Mummy xxx

                                 

Finely Tuned.

My finely tuned life, became a little off balance six weeks ago in more ways than one ! As you know I had a fall that resulted in me fracturing my foot and being put into a plaster cast and given crutches. The instructions being I wasn’t to put any weight through that foot. So immediately off balance, my hopping skills are poor, I’m absolutely rubbish at standing on one leg.  Then reality sets in, I’ve lost control and I have to ask for help. I prefer to do everything myself , I love being independent but that was taken away. It was so frustrating but also a humbling experience as I have friends who deal with much bigger struggles than this daily, for them it never ends. I knew that I’d be standing back on my two feet at some point .

                                

          I’ve made my life balance over the years in order to be the best version of myself mentally . If self care is selfish I’m an extremely selfish woman. I’m lucky to balance the needs of my family and my own needs. One of my biggest needs is exercise, obviously physically I’m no advertisement for fitness but mentally I’m pretty sound and that’s why I go. Anger management, solitude, tension release, zone out, happy hormones and of course it’s important to breathe. Let’s not forget that Homes Under the Hammer can be viewed on your very own screen on the cardio machines ! When life gets tough I thrash that gym, however here I was under house arrest when I so needed head space. Eloise had an appointment at Great Ormond Street, this increases my anxieties hugely and I had no way to release my tension. Another go to place when I’m stressed is the bathroom for a long candle lit soak in the bath. Again access denied. It was like I was being tested, let’s see if she cracks up, obviously I didn’t and I remain crazily sane ! I’m thankful that during the time I was in the plaster cast the weather was amazing as sitting outside really helped. I devoured books, losing myself in their adventures for hours. 

         I guess I did manage to rebalance my life during this period, I had to accept the changes and adapt to them. Finding balance again was important to me. I had to decide what was important and that was allowing my leg to heal. So I had to miss out on a few things, I had to accept I couldn’t do everything around the house but I prioritised what was important. I became excellent at hanging out washing on one leg ! 

                       

                                 

     Of course times of crisis also allow you to see who steps up who offers emotional support, who brings you cake, who ferries you around, who sits with you to keep you company to break up your day. It was a very isolating experience, quite strange I’m saying that as some days when I am out and about I get totally peopled out and seek solitude ! Maybe it was just the freedom to choose being taken from me I didn’t like. It was also good to see the kindness of strangers, the people who helped me while I was wobbling around on my crutches, the helpful staff at the train stations, the patient taxi drivers, the staff at the BRI fracture clinic and A/E. So thank you to all of you that dragged me through the tunnel towards the light and warmth of Spain. To those that didn’t bother sod you then. 

                                 

   So many lessons learnt during such a short period of time, so in hindsight maybe I just needed to slow down, take a deep breath and appreciate the people I’ve chosen to surround myself with and find some peace within myself. I didn’t fail. 

                      

       

Another Year ❤️

Another year

                                     

On the 10th June 2017 we celebrated another precious year of life for Eloise. Another year with my miracle. Another year that wasn’t promised. Another year against the odds. She’d made it. Also in June we celebrated Eloise finishing her secondary school education and attending her school prom. She looked gorgeous while still retaining her quirky style. I never thought I'd see here complete her Primary education so for her to complete her Secondary education fills me with joy. 

     In July we went on holiday to Turkey again for the umpteenth time but it’s Eloise’s favourite place and that’s important. Making memories, taking too many photos, is that even possible ? 

    In August we celebrated again this time Eloise’s GCSE results , that kid with the horrific attendance did well. She passed 8 of her exams getting 7 B’s and 1 C , this meant she was excepted into 6th form to take her A’levels. Despite having so much time off she always caught up with her work and was a conscientious student. 

    September meant more cake as Eloise turned 17 , how did that happen. Once it seemed impossible that Eloise would reach this age but here she is starting college to take three A’levels.

    October brought the end of an era as Eloise said goodbye to Bristol Children’s hospital, the wonderful team of cardio techs and her consultant Dr Martin. Time to transition to adult services. Another big step but forward so that’s the way we like it. It’s hard saying goodbye to people who are so important as without their amazing care from the onset of Eloise’s illness I wouldn’t be writing this post. 

   December another Christmas and New Year, precious memories made, family times and days that were never promised. 

    The months mingle and blur together, our week in a lodge in Somerset, our hot tub chats, Eloise starting her first job helping out at Zebras After School Club, her geography field trip, meeting other young people on a BHF meet up, beautiful memories, bonus days. Days that I never take for granted, days I like to fill with happiness. 

    In April we had the best day receiving the priceless news that Eloise’s heart looks healthy and has no signs of coronary artery disease. She was so brave lying there having that angiogram done awake. She’s such a strong and brave creature. Soon she will be leaving Great Ormond Street Hospital too so it really is the end of an era. 

          Today she told me how impressed her IT teacher is with her work and report on spread sheets, she went above and beyond with her homework and took it to another level. He's the spread sheet expert but used Eloise's work as an example. She's really found her niche and subjects she is passionate about. Hopefully this will later lead into an apprenticeship for her. 

    So here we are back full circle to the 9th of June, the day I was told a potential donor had been found for Eloise. How can you be excited and happy when you know that somewhere a baby has died ? Yet totally appreciating this is the only chance your child has of surviving. You're being given hope tied up in a huge knot of sadness. Also at this point I didn't know if Eloise would even survive the surgery, she arrested in front of me at 22.00hrs just before being taken into theatre. Once stable I said goodbye to her before she was taken through into the theatre suite. Nothing at this point was certain and I guess even now we live a life of uncertainty. 

   So as I write this I’m extremely aware that Zara never reached these growing up milestones, never had these experiences. It is such a year of change, starting to go from child to adult.  I only hope Eloise continues to give her donor family comfort. I know that Rebecca loved meeting Eloise for the first time in April. I've heard from Rebecca today, it's strange that both of us have changed recently , she's said in her email "I'm not too bad this year....." I felt like that during Eloise's diagnosis day. Time hasn't healed me but it's shown me how to deal with my feelings. 

      So Today the 9th June is for remembering Zara and then tomorrow the 10th June we will celebrate 16 years of life and living all thanks to Zara's gift. 

                    

     

       

Chasing the clouds away

                    

As you all know on the 23rd May 2002 I experienced a traumatic event. Eloise being so acutely ill on a ventilator in paediatric intensive care, Eloise covered in tubes and wires, cannulas and lines that they've struggled to put into her shut down body. Eloise with little chance of survival. Eloise diagnosed with cardiomyopathy of unknown origin at this point. Life as I knew it ended on that day. That day left me feeling helpless and emotionally out of control. This psychological trauma left me with memories, flash backs, anxiety, but it also left me numb, I felt disconnected from people. It's taken many , many years for me to feel safe and for my pain to lessen. 

                   

The  years since I've been writing this blog have helped me enormously , this has been my self-help strategy and I've let you be my support. What happened to Eloise nearly broke me but it didn't, maybe the pieces of my life are now in a different order but that's ok. Even though I found others going through similar experiences online ;my transplant family; I still felt isolated from the rest of you. 

      As well as the emotional symptoms of shock, guilt, sadness etc I also experienced physical symptoms such as insomnia, being easily startled ( I remain quite jumpy !) and I can often feel agitated when I feel tense. These are no longer constant as time is indeed a great healer, these symptoms are mainly saved up for hospital appointments or specific dates. I know I shall continue to grieve what I lost, I know I'll continue to feel anger, I know if I screw up my eyes and think hard enough I can play back many traumatic conversations in film colour on the back of my eyelids. But this means the harder times are very infrequent now. I know life can change in the blink of an eye, I also know worrying about it won't change the outcome. I can be quite wise on occasion.

    The agitation and insomnia have been helped greatly by that evil known as exercise. I need my gym fix or a gentle swim. It calms me or allows a positive outlet for my anger. It's a good place for me, not a bad addiction either ! I listen to music and focus on myself, I don't give myself time for negativity. This is self care. I try and get between 7-8 hours sleep and I do manage that 95% off the time these days. The "loneliness"  has gone I feel by writing down how I feel I'm letting you all in, I'm no longer isolating myself. This is good, I don't want to sit in a circle and discuss how I'm feeling, I don't want 1-1 with a therapist I want the freedom to write when I need to. I know how to calm myself down, time out in the bathroom, candles, music and a book or just curled up along lost in a book. Books offer great escapes ! 

    I don't need my traumatic memories erased they are part of who I am now. However it's good that they are mainly at rest. I guess it's also about avoiding the triggers with me. So nemesis day I'm ready for you, eyes wide open so that'll stop you delivering any flashbacks !  Let's just have a "normal" day ! 

       

Realisation - a positive change.

Less than an hour ago I was sat in my kitchen looking at my iPad smiling to myself as a wonderful realisation swept over me. I’d forgotten the date, well I’ve been writing the date all day so I know it’s the 14th of May but I hadn’t realised it is the 23rd of May next week. I was sharing a link on my Facebook to the BBC documentary that’s on heart transplantation tonight so I wrote a little piece about my experience with Eloise. It was only then that I realised my nemesis day was so close !
                                          The 23rd of May has haunted me for many years, the day my world came crashing down as my precious Eloise was diagnosed with myocarditis and not expected to survive. The pain has eased over the past few years and I’ve stopped crying ! I never used to get through the day without a session of weeping , usually in private, usually into my pillow. Such a lonely time to be upset. People expect you to get over such events. You’re told or expected not to dwell on the past. You’re told that “time is a great healer” maybe it is but you remain scarred. Yes the event is in the past but I cannot switch off from it completely, it’s not a light switch. I’m sure many of my friends have heard these things or maybe even said them ?  You can’t just get over a trauma like this, you cannot just move on or forget it, you have to live with it and find peace. Life will never be the same again. Having pressure put on you just makes things more difficult, you have to work on your feelings in your own time and only when you are ready.

                              For me writing this blog has really helped, I can be honest, I can express myself, I can “talk” without fear of crying. I can explain how I’m feeling without anyone looking at me. I feel safe in here and writing this is my therapy. I’m talking to you and I feel you understand that what happened to me is important. Currently biting my nails........
             I know I won’t totally get over what happened to Eloise, I cannot forget what I saw, the flashbacks still happen, they are very vivid, imprinted in fine detail in my brain. But I can live with them. They show me what a fighter Eloise is, they show me how far she’s come, they remind me to believe in miracles, they remind me how precious and fragile life is. They are part of me now. My demons are getting tamer and I can let them out of the box in my head when I need to.
                            So 23rd May 2018, I guess I’m more than ready for you. A life changing day but you haven’t broken me yet.