Waves

Waves

          

Waves and learning how to ride them, fear not I've not gone all athletic and out doorsy. I'm not writing a blog on surfing, imagine me wedged in a wetsuit......no maybe not. I'm talking about the waves we have in life, the tides, the ripples, the storms. 

      Life over the last few months could be described as swimming through choppy shark infested waters with periods of duck pond calmness ! The waves have been quite high at times and some have gone over my head, but I did not drown. I will confess to a few near drownings and a few tearful flood warnings . The question "are you all right?" opened the tear tap a couple of times ! 

         I often have waves of sadness and grief but I manage them, if you plan ahead you can survive the tallest of waves. If you're really lucky someone throws you a life buoy, reeling you in and telling you everything will be ok. Sometimes it feels like the waves are relentless, I'm screaming please give me a break while the sadness batters my mind and body. The pounding is painful but I'm lucky enough to have good people by my side dragging me back to safety or at least wrapping me up safely in a life jacket ! Sometimes they just have to watch me struggle to shore by myself, but knowing someone cares enough to look out for you can be enough. It means for them you won't give up. It's hard when the waves are coming at you from many directions, hard to not be totally pulled under, you need someone to rescue you in a lifeboat at that point. Again if you've got the right people in your life you'll not sink to the bottom of the ocean. So here I am, surviving storms but hoping for a bit of calm soon, I feel a bit bruised, so very tired but always hopeful. 

                                        

         

   Times like this can be exhausting, I've dealt with family illness, financial matters, divorce, ex husband angst, Christmas planning, death , stress, anxiety, children juggling, my money pit of a house. I know it's no different than what many of you are experiencing. Maybe by me sharing this you'll realise we all have the same worries and anxieties but we keep them bottled in. All very good at putting on a smile and carrying on.

       So I'm getting good at treading water at the minute, I have no choice but to keep on swimming......go Dory, go ! I have to be brave and face what's coming. Dealing with a flood of emotion can be exhausting. One day I hope to reach acceptance, to accept what's happened in the past. I know I'm not there yet but that's ok. It's ok to be angry, scared and sad, it's ok not to be ok, it's ok to be honest with people. 

          Life can be like this at times but there is still so much to be thankful for and my life still has plenty of good times and sparkle. I'm lucky I have lots of lovely things planned over the next few weeks and months and seeing these things ahead of me like bright light houses , well it keeps me floating .

    I'm not afraid of the storms, perhaps sometimes I'm afraid of the calm as I fear it's too good to last. I know that's a little crazy but too good to be true often is ! Some of the waves going on at the moment in my life are transferred from those I love dearly . We cling to each other and jump those waves together, we may as well make a splash together ! You learn a lot about yourself and the people you've chosen to share your life with during the storms. I know how to process my fears better, I know what I need to improve on, I know who I am, what I am capable of, what I can tolerate, what/who I need to survive and maybe more importantly what I can let go, drift wood.....I'm a survivor , I'm surviving circumstances that I feared the most. I'm not prepared to drown, so if anyone can lend me a boat that would be good ! 

                                            

          If you too are fighting the waves, look at them head on and just breathe, you've got this. ❤️

Restoration of Self ❤️

Restoration of self ❤️

                            

                                         

      

It's now a few days since Eloise's cardiology review at Bristol Childrens Hospital. I should now be feeling relaxed and relieved it's over but I don't. The appointment went well with no shocks , so why do I feel so much tension in my body and why is my mind in overdrive?  Pre appointment I was quite tense, but that's quite normal for me now. Since her blips in 2013 I'm always on high alert. She looked well and felt well again this time around so that was a plus. The night post appointment it is normal for me not to sleep, it's a time of reflection, memories ,fear of the future. I know I advocate living in the present but every now and then I have to gaze a little futher.  

       

       Heart Transplant Survival Statistics, I know they're just maths and figures and can't detail lots of information about each heart transplant recipient but I keep thinking of them at the minute. I'm wondering if it's because we are heading towards Eloise's 15th Heart Transplant Anniversary next year.  When we transferred to the Freeman Hospital in Newcastle, we spoke with the transplant coordinators and we were given an information pack. Within that pack survival statistics , with patients living an average 5-10 years post transplant. Those figures etched themselves into my head, now they've improved, but I think it's now 10-15 years. So can you see where I am ? Obviously I can rationalise that these are just numbers and I have hope that Eloise will outlive them. Just wish I didn't know. 

      I'm doing all I can to reduce the tension coursing through my body. My back just aches, I have the most comfortable bed with a memory foam mattress but at the moment the bed is my enemy. Nights are so long, I'm tossing and turning all night, trying to settle, trying not to give up on the idea of sleep. I wonder if that makes things worse ? Should I give up and get up ? However I'm not one for taking a nap so I'd never gain that potential sleep again. I crave a good nights sleep, I hope I get one soon, this year would be good ! I'm listening to my body and going to sleep early which is a good thing as its the only way I can clock up enough sleep to enable me to function. 

        I've spent time in the gym, I've swam, I've sat in the sauna, steam room and jacuzzi but still I feel tense and I've not been able to zone out. Gym time is usually my best form of therapy, my antidepressant medication , I've even upped my dose to four visits this week ! I've tried reading that's not successful at the minute, no story had been able to suck me in this week. I've walked, I've shopped , I've sat in the bath for a few hours and I've eaten cake ! I have managed to watch a few films which is highly unusual for me. No surprise that I watched a film in the cinema but to choose to watch 3 films to the end at home is a shock. For me to sit in our living room is highly unusual, but I am trying so hard to relax as I have so much to do over the next few weeks ! 

        

I will just have to continue to be gentle with myself. I know if I don't take every opportunity to self care I'll feel worse and my brain fog will get denser. It's hard making time for yourself sometimes, we always feel guilty don't we ? However taking time out now means I'll remain well in the long run so it's worth it. I even sound as if I'm trying to justify the me time while I write this ! It's been good spending time with my children this weekend, just enjoying each other's company. I'll surround myself with those I love and fill my days with as many happy things as I can. I know I'll be ok again soon, I always am. I'll just sit things out and wait for the tide to turn again. Thank you for being by my side and for all your words of support this week. Love to you all ❤️

                        

      

   

    

Triggered

Triggered

         

It's funny how a day can change just like that. From being an ordinary not very exciting but quite pleasant Monday to a washout of tears and overwhelming sadness. You see someone unintentionally pulled the trigger. 

          It happened at the gym, in the sauna to be precise. Often the hub of conversation, today's being religion and going to church. I have a fair enough knowledge of the Church of England faith so I could partake in the conversation. Until I was asked if I went to church and the follow up question being what made you stop going.... I mumbled something happened in my life and fought the tears. Thankful that the sweat was already dripping into my eyes and saunas are poorly lit places. I then withdraw and became thoughtful and quiet. When the time was right I made my excuses and left the room. 

    You see the innocent question triggered something within me that made me recall a sad period in my life. I'm sure you can all guess what traumatic time I was left thinking of. Trauma triggers are quite upsetting , I can't control how I feel and often my reaction seems an over kill. I went home and cried so much that I gave myself a headache. In fact even five hours later my eyes really sting. It feels wrong to say I have PTSD ( post traumatic stress disorder ) but  guess that's what I displayed again today. The feelings are completely out of my control. You wouldn't think a conversation about God would do this to me, I guess it was a subtle trigger , I didn't anticipate how wretched it would make me feel. When Eloise was admitted to Bristol Childrens Hospital and the subsequent hospitals she visited The Freeman and Great Ormond Street we were asked our religion. This was duly documented , however it meant visits from the hospital chaplaincy service , it just wasn't for me. I found their exuberance testing and I couldn't cope . I didn't have the energy to explain our story anymore times, I didn't want to say why we were miles from home. I just wanted to shut down .  I admire those with a strong faith but mine was tested and it broke. I know what happened to Eloise just happened, just a rare complication but I can't be the only person to question why awful things happen to innocent children ! In the end I stopped saying C/E when asked, instead I stated we had no faith . Now Eloise's notes state C/E again as this is her choice and I support her decision. 

    I suppose my emotions are running wild and high at the moment as guess what ? Indeed Eloise has a cardiology appointment this week. I wish I could see what's going on inside that body of hers. So stress levels are high and I'm trying my best to stay happy but today I had a wobble and I cracked. Thankfully, a friend, hot chocolate and a warm fuzzy film popped me back on track again. 

     Please if you pray, pray for my Eloise to stay well, or just keep her in your thoughts. It's a tough journey we are on but with you all next to us we'll keep moving forward. Much love ❤️ 

       

An Ordinary Life

          

It's been quite a while since I wrote anything in my blog, I take that as a good sign as my mind and conscience are clear. I'm just here living an Ordinary Life. I used to think when I was young that ordinary lives were boring , nothing to write home about, just routine staying at home lives , routine and mundane and that extraordinary lives were the ones filled with travel and amazing people and crazy adventure. Can life can combine elements of ordinary and extraordinary? 

                          

   I think I thought life would be different, I guess we all do, don't we ? I thought I'd need to do something amazing lose a few stones, climb a mountain, learn a new skill, go on an adventure. I guess all of these things would have been fun, well not the dieting bit ! They would all have been memorable if I'd done them. Do I look at this from a different perspective instead ? Forget the dieting bit, it's not for me as cake tastes too good , I'll balance out my cake addiction by flirting with gym a few times a week. Now let's take the mountain, I'm climbing that bloody mountain, I've been climbing it relentlessly for many years, navigating my way through hazards , blizzards, rockfall and thankfully a few easier phases of the climb. Sometimes I've lost my footing but thanks to the safety equipment aka as some bloody good friends I've hung on. As for new skills, being a mother has taught me so much and given me so many rewards, being a mother of four means I have good negotiation skills and I can prevent a war breaking out ! As for adventures , I have a good life, maybe all my adventures have been small ones but that doesn't make them any less meaningful. My life isn't over I still have time to plan and experience the most fabulous adventures. There are still wonderful people waiting to meet me and help create the most colourful memories. 

                     Did I get the meaningful life I expected ? No probably not but that doesn't mean I need to feel defeated . Life unfolds around us, we aren't always in control , it likes to shock and surprise us. But I'm here, I'm alive and enjoying all I have. I really am I privileged woman with a good life. Yes I have sad days but that's ok too. So maybe ,just maybe the gap between an ordinary life and an extraordinary one isn't that vast. Well that's a relief ! It's just about being honest, being happy whenever you can, enjoy the small things each day brings. If you do feel down let people help you find your smile again. The life I have may not be the one I'd have chosen but it's mine and I'm living it. I wonder what those looking in on my life think about it ? That's quite an interesting thought isn't it ? I think I'm doing an ok job with the resources available and under circumstances that can sometimes be a challenge ! 

      I guess I used to underestimate an ordinary life and now I crave it and relish the moments when my life isn't a stressful, chaotic mess. I'm often wonder what life would have been like if we hadn't been catapulted into the world of organ donation and transplantation . Maybe my life isn't ordinary after all in a peculiar kind of way. I doubt many would want to trade places as its not the kind of extraordinary that anyone craves. I suppose in life we all want to make a difference but we aren't all here to change the World. If I can make someone happy every day and make a difference to their life I'll take that . To that person I'll have made a difference.  If I'm able to do that for people then my life won't have been a waste. I think it's the society we live in and social media etc that makes us feel we are selling ourselves short if we don't live larger, dream bigger and reach for the stars (think S Club ) However there is a lot of good in living an ordinary life, a life of love, solid friendships, helping others, a life where you spend quality time with your family because you can. There is a value in having a quiet life. I'm so lucky to have the finances that allow me to work part time so I get to spend time with all those I love. With time left over so I can recharge myself too. 

                      

         While having an ordinary life it doesn't mean you cannot have dreams and goals, dreams are good for the soul. One day you may achieve all of your dreams but this may take time and time is precious. You don't want to miss out on happiness now while waiting for bigger and better things to come your way. You need to find happiness every day and go to bed each night content . It's the little things. An ordinary life is enough. While I am enjoying my ordinary life I can use the energy I have to embrace any new opportunities that come my way. I can dream, that's when extraordinary things will happen , if I let them ! 

      Tomorrow it's time for a week of extraordinary as I'm going on holiday with three of my precious children and I know we'll have fun and make wondrous memories that one ordinary day we can look back on and smile again. ❤️ 

Gone Too Soon.

Death, I'm not ready for it. I fear it as much as the next person. My own mortality frightens me less than losing those I love especially my children. It's just a natural order that parents pass away before their children. I try not to think about death, as it's too final, the last goodbye. Sadly it cannot always be avoided and tomorrow I'll be attending the memorial service of a dear friend who passed away too soon but after many years of ill health.

         

      

               Living your life one day at a time is all well and good as long as you feel you are achieving all you want in life. "No regrets" is a common phrase,  I often throw that one out there but in truth I am lying I do have regrets. I regret wasting time on the wrong people and not spending enough time with those who deserved my attention. I let the demanding people drain me of my energy and I left the unassuming folk little of my time, if any. I'm angry with myself, life is busy and chaotic but I could and should have found time for those who loved me unconditionally.  When I was with S I saw very little of my friends , I let them down and I made myself isolated, for for an easy life. Luckily most of them stuck around ! 

Losing someone you loved is so hard and it sends ripples through the rest of your life as out of the blue something will happen to remind you of them. It's sometimes shocking how even twenty or so years later the pain of their loss can be sharp enough to take your breath away. We need the human bond to feel connected and joyful, and we enjoy life much more when we share it with people we love but when they die a void is left and it's very hard to fill. No forget that it's impossible, I'm forever flawed.

Coping with loss is one of the most difficult things I will ever have to do. I don't cope, I just box it away and on significant anniversaries it spews out and I cannot ebb the flow. I already feel bereaved because I "lost" my fit and healthy Eloise. The thought of losing her totally is incomprehensible.  Everyone copes with bereavement differently , and some of us never do. I do believe you can die of a broken heart. 

When I lose someone I love, it changes my universe and my inner peace is shattered and the equilibrium of my life becomes unbalanced and therefore nothing seems right. There is a future that will never exist and a past that I want to go back to only to see my loved one again. I feel like I can’t be further from the present moment and reality. I find this disturbing as I like to live in the moment but the moment is without the person I've lost in it. They only exist in the past and some of my past is painful to revisit. So I'm forced back into a time when life was difficult and uncertain. I am also left thinking of the lost opportunities , we should have seen more of each other and made more memories.

     When I need to be alone to think about my friends I often seek out water, it's reflective , I like the noise it makes especially the sea, it's ever changing which is just like my emotions. Sometimes like this evening the best I can do is lock myself in the bathroom and spend hours in the bath, trying to relax. Swimming also helps me a lot and helps me feel peaceful. So like I said at the beginning of this blog post Tomorrow it's time to say goodbye to a wonderful lady who played such an important part in the beginning of Eloise's life as she was at her birth. As you can imagine giving birth to a baby born two months prematurely was a very scary time for me. But I was lucky to have the best person at my side , looking out for me, supporting me and comforting me.  I'm feeling very emotional as I try to deal with a tirade of feelings. I'm sad for the loss of my friend and Eloise's godmother.  I'm also dealing with the memories of other important people who I've said goodbye to .I'm struggling to dealing with my fear of losing my child, as I'll never be ready for that. I know I'm going to cry, I'm already at the taking deep breathes stage. I avoid as many funerals as I can because I become awash with emotion and so many feelings mingle together. I'm scared of funerals and the final goodbye.

   I know life is forever changing but the loss of someone important is very severe and adapting to them no longer being there is extremely hard. I know they'll remain in my heart and in my memories but that's not always enough. I have no religion , no faith but when it comes to death I try to protect myself . I have to believe there is something more than this. I have to think I'm going to see them again one day, otherwise it's even harder to deal with. I didn't want life to change in this way, I shouldn't have experienced losing friends already, they've been taken too soon. Losing a couple of people who I was extremely close to changed me. It was the only way to cope after such a traumatic loss, I couldn't go back to my old self, this was and is my coping mechanism. I remember when I lost J to suicide begging for him to come back but nothing could bring him back to me. His death couldn't be undone and I was left reeling from it. It took me a long time to even mention him and I'm not sure I have found peace. All I'm left with is stories of the good times we shared and that has to be enough. 

      

I think I've run out of energy to say anymore, I feel I should be full of wise words and life lessons. Just live people, just live and enjoy each day to your best ability. May as well leave you with Mark Twain's wise words ! Take care and lots of love my friends. XxxX

                     

A Piece of Me

A piece of me

                                           

      

“It feels like everyone wants a piece of me.”

Just the above really, life seems to be hectic at the minute and the school holidays a distant memory. The past three weeks have been a whirlwind physically and more so mentally. Thank goodness I relaxed for nearly six weeks and took good care of my mental well being. At times over the past three weeks I've felt overwhelmed, rushed and at times even buried under the weight of so many competing demands. This middle aged lark with aging parents and young children can be a challenge . I feel torn and scattered running my home, working ( very part time I know ) and caring for many loved ones. I feel shattered into many pieces and incomplete.

    Yet at the same time it's good to feel needed and wanted, it's good to know you can make a difference. There are times in my life that I have felt very alone and very isolated. Partly because I didn't reach out to people and partly because I hadn't found the right people to engage with. I never want other people to feel like that. I hope by sharing Eloise's transplant story and our fourteen years of experiencing the good, bad and ugly we can reach out to people in a similar situation. 

    I just wish life could be more balanced, at the moment I'm in the "it never rains but it pours" stage ! Just one thing after another and I feel like an emotional wreck, then I feel guilty for feeling this way. I've cried with sheer frustration, I've cried as I'm tired of all this, I've cried because I'm sad, I've cried because I'm angry. Yes it's been a soggy month so far, sorry pillow and thank you waterproof mascara. Thank you work colleagues for dealing with my tears, just don't ask if I'm alright next time. I am ok really just a break from dealing with anything else would be good, time to catch my breath then I'll be right back with you. 

       

   

      Most of the people who need a piece of me, would be at my side propping me up if I needed them. I no longer allow the takers to take, having been previously drained by some people I no longer allow this to happen. The relationships and friendships I have now are equal. We scream on the roller coaster of life together. Also I give pieces of myself to people I've never met, people in the transplant community again this is my choice and I'm very happy to provide that support. 

   So I'm hoping for a few days of the quiet life and spending quality time with family and friends this weekend. Starting to rebuild myself ready for life's next attack as it will happen.  So please life let me have a weekend of loveliness, let me sleep, let me clear some of the fog dampening my restless mind, just let me be........thank you. 

Behind the Smile

Behind the Smile.

         

I like to smile, I have the crows feet to prove it and I'm very thankful for good teeth that allow me to smile broadly ! Thinking now of the dental horrors regularly seen on Jeremy Kyle ! Here I'd like to take the opportunity to say a few thank you's. Thank you  orthodontic services at Musgrove Park Hospital for my removable brace, thank you Colgate toothpaste, thank you to lipstick manufacturers for colouring my smile and thank you mum for good teeth ! 

       Seriously I'm a generally happy soul but sometimes I'm smiling to hide the pain from you. It's easier you see than explaining, it's easier not owning up to how I feel as saying it out loud makes everything seem worse. It makes it more real. I've had a blissful six weeks at home with my children.  Everyone has been well and we've had the opportunity to spend quality time together at home, on day trips and on holiday. It's been all very normal. It's been perfect, nothing has reminded me of the darker times. Oh and that thing called sunshine brightened up most of my days. I have been able to relax fully and read a library of books whilst sampling many icecream delights. Oh and the odd alcoholic beverage !

                                    

       

    

                 Then Eloise had to have her blood tests taken on Thursday, this also meant a couple of frustrating phone calls to make the appointment.  So now we're waiting for the results which involves harassing the transplant team by email and phone. Then her next hospital appointment will need to be arranged for next month, again this will need to be chased up by me. We've sorted out a cupboard of medication, put in prescriptions and collected a previous order. I know none of this is a big deal but it's a reminder that Eloise has had a heart transplant. Then this morning I had an awful dream , I'd been told Eloise had chronic rejection and her treatment options. I wrote out a whole post updating you all. When I woke up it took me a while to know I'd been dreaming or having a nightmare. Sadly some of my transplant family are living this nightmare right now. One day it could be our reality too, nothing in the transplant world can be taken for granted, not even one day. I look at Eloise enjoying life, hanging out with her friends, doing her school work, loving her tortoises, laughing with her siblings and I want to see her grow up. I love the young woman she's growing into. She's 16 on Wednesday, to have her with me aged 16 is wonderful, once it seemed impossible but I know her now and I'm greedy for more. Yes I'm grateful for every extra day I've had but I'm also sad that her life maybe limited. Then there's the guilt for even thinking she maybe taken from me at a young age, like I've written her off, like I've given up on hope, I haven't.

            It's Organ Donation Week this coming week, it's starting tomorrow and I usually immerse myself in it but I haven't this year. Im not ready for it. I'm wondering if it because I've just spent 6 weeks mainly out of the transplant loop. Not ignoring my transplant family but not submerging myself in it either. I have looked after myself and my own . I took a step back and a few deep breaths. Now it's arrived and if it's anything like last year's event media coverage will be poor, but I can't complain as I've done nothing to promote the organ donor register. Well I did try and beg for a free gym membership for Eloise but Duncan Bannatynes not replied yet........think of the publicity for your health clubs Duncan ! 

        My smile is genuine as I have many, many, many reasons to be happy and lots of fabulous friends who light up my life by just being them. Maybe we all need to live our life like we are dying, because we are. I try to do something that makes me smile every single day, all the little things soon add up. The tears I experience aren't too often even though they threaten to creep from my eyes, I halt them. I'm not depressed, I don't think I have ever been and I know I'm lucky on that score. I think I have every right to express sadness and that actually shows I'm capable of feeling. I'm just a human, trying to do her best for many people while remembering to look after herself.  I'm just ME and I'm not so bad..........