Goodbye my 2020

 2020

Not sure where to start with this. I know many have found this year hard and will call it their worst yet and that’s their prerogative. I can’t say I feel that way. I try to look after myself and my family and not get too caught up in what everyone else is doing. I just can’t do angry for very long without it making me feel exhausted and miserable. I trust my own judgements , I trust what I feel is safe for myself  and my family to do. I also realise that mental health needs to be considered and I’ve had to give that some thought and act to look after my childrens and parents mental well-being . Of course there’s been disappointment because of broken plans, missed holidays, missing catch ups etc but I’d rather that than the despair of losing a loved one. I’m privileged to be able to go on holiday etc during normal times when other people are struggling. We initially had food parcels from the government as Eloise was shielding so I’ve tried to pay it forward by donating to the food bank and to Fare Share Bristol. So here are some random ramblings from me to end the year.

Knowledge I already had nurses make the best friends.

2020 just reaffirmed that .

⭐️They share the same keep calm and carry on nature so the same resilience.

⭐️the caring nature , the empathy , the top listening skills (well the majority anyway) 

⭐️ they tell the best stories , you know who you are. 

⭐️ they have the best sense of humour , it’s sometimes a sick sense of humour but we laugh anyway.

⭐️they are always happy to sit down have a cup of tea and cake with you. They can be bought with sweet treats and love a new on the market chocolate bar to taste test.....thank you Queen of Treats. 

⭐️they give the best medical advise , basically telling you to get on with it . There’s no time to be sick ! 

⭐️they are trustworthy and you can talk to them in confidence as we are taught that kind of thing online every bl**dy year and of course we owe a duty of confidentiality. 

⭐️on the other hand gossip is good , keeps us entertained during this lockdown life.

⭐️ as a workforce they just get on with it, if there is moaning it’s collective moaning and who wants to freeze in sub zero conditions indoors or work with beep, beep, beep ten times a week.

⭐️ they are also prone to exaggeration, see above. 

⭐️ they can even make you laugh while in full PPE, actually just by looking at them in their hazmat suits more suited to a 6ft man mountain. 

⭐️ apparently they can even save your life. I think this means in a resus situation but this year talking has saved sanity and mental health. Being together has meant everything. 

In this year like no other , I’m so thankful for my work family. These ladies have been rocks and true friends. They’ve definitely made the situation so much easier for me. It’s nearly my 32nd year in the NHS and this year has been like no other. Although I do remember how tired I was and how sore my hands were as a student nurse, nursing during a flu epidemic in November and December 1989. The peak of that epidemic saw an infection rate of around 575 people per 100,000 and there were between 19,000 and 29,000 deaths during this outbreak. This time around although a key worker I’m most definitely not frontline but we all have our role to play keeping the NHS going. Except I did bow out for two months as I had a huge conflict of interest between my home life and my work life. I needed to minimise the risk of Eloise catching Covid-19, I was just so lucky that my managers arranged a period of unpaid leave for me and my colleagues understood. While I was off we received lovely door step deliveries from them to keep us going. 

    I’ve missed my old ward family my ladies from ward 36 and hope to see some of them as soon as this is over for our dinner dates and catch ups , we may need at least monthly meetings to get all the chat in. I’ve also missed seeing my original nursing friends Julie, Lisa and Emma from my RGN training in Exeter. We usually get together 2 or 3 times a year. Julie was one of the last people I went out with in March. 

       I’m so proud of the NHS and all those who work there, you’re all amazing, my heroes. I hope the vaccine gives us back our lives.

I’ve learnt it’s ok in the slow lane.

It’s ok to sit and just be.

Take away picnics on a park bench are a good thing.

Seeing a friend for a hot chocolate is fun.

YouTube is my exercise buddy.

I’ve learnt to bake.....nah that’s a lie.

I’ve learnt a new skill, nope that didn’t happen either.

I love my Nintendo switch and Animal Crossings.

Amazon Prime is a blessing during a lockdown.

I don’t like watching TV , I knew this.

I can’t rewatch films or reread books 

I’ve not done one zoom meeting, quiz or call, hurrah. I did use Face Time once on Christmas Day 

I’ve not been alone in the house since March and I’ve coped.

I miss aqua aerobics, the cinema and going to the theatre.

Percy Pig is a top lockdown purchase.

I’ve not found this year hard as I’ve had worse.

I’ve taken every opportunity to do something this year when covid restrictions have allowed. 

There’s more of me but mentally I’m in a good place and a broken mind is harder to treat then the extra weight I’ve gained.

Cake is life......and fattening, sigh.

I’m alive and so are those I love. 

2020 I can’t complain, thank you for all you’ve taught me. I feel well equipped now for the rest of this hour, day, week, month, year, decade and beyond. 2002 taught me so much and altered me, just swap the numbers around and we have 2020. Living in the moment and seeing the good in every day has truly helped me......plus a little help from my friends. ❤️

         

Keeping it Real

 

I’ve given this quite some thought before putting these words down. So here goes, I’ve found being honest during this pandemic hard at times. I totally appreciate the whole we aren’t in the same boat thing and that it’s not a contest. My life has never had been about that. I’ve been navigating my own boat for decades and weathering my own storms, as for winning , not really but I always take part in life. If I said I was struggling and finding this situation hard I think I’d be well supported but when I say I’m ok and life hasn’t altered too much I feel I should have said nothing. I know a lot is uncertain right now and the country is struggling because of coronavirus but having a good day, week, month, season shouldn’t feel wrong. I think it’s important to give yourself permission to savour those moments of joy, even in the face of a pandemic. In fact, it’s important to enjoy all the little things during times like these. For me it keeps life real, it makes it manageable and varied. We all react to situations differently in normal times so we shouldn’t be surprised that this is still happening during the pandemic. 

               This slower pace of life has made me stop and face Warren’s death and deal with it sooner than perhaps during my extremely busy on purpose period of life. For that I’m grateful. Lockdown gave us the opportunity to be a family of five under the same roof for 6 months, precious time that we wouldn’t have had. Shielding was hard, that’s why we gave up after two months, we couldn’t make it work and I watched my children’s mental well-being start to slide. I couldn’t keep Eloise locked up away from us. So the hardest part of lockdown was Eloise being in the extremely vulnerable category. We’ve spent 18 years treating her normally and the virus meant that had to change and we had to acknowledge her medical conditions head on again. Transplantation and immune suppression became a focus. Once we stopped shielding life shifted a little back to the new normal. Lockdown has made the relationships that I have with my work ladies even stronger, they really are true friends. We have been through so much together this year, so many traumas, upsets and challenges , but the important word I’ve used in this sentence “together” We have also celebrated and continue to make plans. 

  No this year hasn’t been the best but I’ve had worse times.I refuse to write it off , the Summer would have been wished away to reach an Autumn and Winter where let’s face it nothing has changed. We are still in uncertain times living with a virus that’s currently going nowhere. Like most people I like making plans and having things to look forward to and sadly Covid has meant most of those plans have been cancelled or postponed. However I’ve made new simpler plans and managed some spontaneous catch ups with friends, I’ve said yes more to any opportunities that break from the routine of work and home life. Hastily made plans can still work as our trip to London at the weekend showed. 

        By writing this I’m just acknowledging what the last few months have meant to me. I’m optimistic by nature but can be swayed into being a realist and this pandemic is something I have to keep real. People are dying, because of contracting Covid, because they’re not receiving specialist care for other conditions and because of suicide. I’ve seen my own parents age since lockdown and heard stories of the decline in health of many of our elderly and disabled population. 1 in 5 of us will have experienced depression during lockdown , so I totally support the latest ITV campaign Britain Get Talking campaign “No call should go unanswered “  I’m lucky as I’ve found the tools that keep me well mentally and what I’ve learnt has stayed with me during the pandemic. Yesterday we bought the soft toy Grinch and goodness knows how many Christmas decorations we will put up this year. I’ve never had autumn decorations before but anything that makes you smile is worth investing in.  I know that for many a healing hug would help enormously right now and sadly that’s something I cannot give you. However know my arms are wrapped around you and I’m holding your hand, while I’m strong let me look after you and together we will get through this. Just continue to be you, continue to say how you feel without judgement, keep talking , keep going and always be kind. 

“I can’t believe it’s been a year” they say. ( I can I’ve lived it 💙)

 The most common phrase at the moment, “I can’t believe it’s been a year.” Well I can as it’s been one of the strangest and unsettling times of my existence. That was before covid-19 joined us, showing me once again the power of a virus to destroy life and change how I live. Again a time of uncertainty, change and adapting but this time I’m not alone. I think knowing what to say to someone when a loved one has died or even at this one year stage is hard. Personally for me the person that ignores you is the hardest to deal with, someone who gives it an awkward go is much better received. It’s a difficult thing to get right and I’m difficult ! I don’t really like “I’m sorry for your loss” but I appreciate the sentiment. I didn’t carelessly lose Warren he died, maybe I’m too literal in my thinking. I also don’t need anyone to feel sorry for me, gosh I’m ungrateful aren’t I . I just think I’m honest actually. If you don’t say how things make you feel nothing will change. I think I’ll be mindful of what I say to a grieving person in the future, although I’ll probably struggle to say something meaningful. 

        Back to the pending one year anniversary of Warren’s death. I’m lucky as I have been left with a wonderful amount of good memories of my relationship with Warren. Thanks to Facebook the photographs have threaded themselves through the year. However seeing all we had has also made the loss feel greater as there is no future us. I wanted this year to be full of new memories as I know Warren would want me to enjoy life and make plans. I made loads of wonderful plans but sadly they never happened. My year of doing 50 things for my 50th stopped at 25, recently I adapted the list but to be honest the moment has now passed. The new plans I’ve made since the easing of lockdown have been simpler but just as precious, everything is special as we are still here. 

         I’m ok, but sometimes I even question that as shouldn’t I be........x,y,z. However this is my grief and alongside it I have to live a meaningful life, existing isn’t for me. I’ve always had the get up, dress up and show up mentality with added lipstick. It’s never failed me. I don’t cry very often, usually because someone has been so kind regarding one of my posts about Warren also sometimes my words catch in my throat and tears threaten. I think the first few days I was awash with tears and the subsequent pre Christmas weeks and Warren’s birthday were also quite water logged at times. The firsts are the hardest thing, I was warned they would be, first Christmas, Warren’s birthday, first New Year, first NT visit and the list goes on and there’s still the first Summer holiday to think about as this years hasn’t happened. So the first anniversary of Warren’s death is another date, this will be tough I’m well aware it will be. I can already start the conversations that are stored in my brain from that day. I can have vivid flash backs, the phone calls, the time line, the “bad news” room, the doctor telling me the news, the nurse who was just so bloody awful at giving the bereavement advise. However I’ll also remember those who were there for me that day, my work ladies especially Rose and Shelley. Warren’s friend and colleague Paul and through him superintendent Andy who came to my house at 9pm and sat with me and said he’d help me organise a memorial service for Warren. In every situation you are reminded to look for those who help you. 

       I have some wonderful people in my life and despite how it appears I’m not always very peopley so feel honoured if I’ve “let you in.” Thank you for letting me talk about Warren, I know talking about death can make people feel awkward but I feel it’s because we don’t talk about it enough. My FB albums documenting my year since Warren’s death have helped me, a safe outlet for sharing, a document of my feelings and somewhere to share happy memories. I know others have found them useful too. Warren will continue to weave his way through my life, so I’ll carry him forward . He was a good, kind man and I know many remember him because of his generosity of spirit. He had so much to give, kindness goes a long way. 

                So on the anniversary of Warren’s death please don’t think of me or feel sad or sorry for me. Instead have a glass or two of your favourite alcoholic beverage and raise your glass to Warren and toast his life, the 47 years he lived not the one year anniversary of his death. He usually had a glass of something in his hand, along with his vape ! 

Nemesis Day Blurred 23/05/2020

Here we are 23rd May 2020 my nemesis day. The day Eloise went from appearing slightly unwell to ventilated with a 30% chance of surviving . The day I heard the words enlarged heart and cardiomyopathy. The day I faced every parents worst nightmare and started living it desperately hoping I’d wake up. The day which has haunted me ever since and given me so many flashbacks and what ifs. Until this year.

                I woke up in the far too early hours of Thursday morning and calculated the date , ahhh yes the 21st of May as Friday is the 22nd Amelia’s birthday. My brain just left it there until I sluggishly got it thinking, if Friday was the 22nd,  that meant Saturday was the 23rd. Tick, tick, tick which meant I had almost got to the 23rd of May and given it absolutely no thought. Usually in the weeks building up to the day I get more thoughtful, more flashbacks, more bad dreams, more unsettled and therefore the need for additional selfcare kicks in. The retreating to my bedroom, candle lit baths, leisurely walks , gym sessions, swimming, also the insomnia creeps in and the nightmares start up, but not this year. I guess this whole lockdown has been about selfcare but all I’ve needed is my hour or two of reading time and a few tea lights lit some evenings. I’ve rarely left the house during lockdown, not even bothering to go for a walk. Each year things have got easier I stopped crying on this day 4 years ago and that was a huge milestone ! I have just read my Facebook post from last year and I was still having intense recall of this day and it was difficult. My mind flooded with the conversations I had and heard on that day and visualising all the rooms I spent time in. This year yes I can bring all of that into focus but it hasn’t crept up on me I can choose to draw it out or not.

       I think this year we are all fighting the same fear, the same enemy Covid-19 and yes Eloise is extremely vulnerable to the virus but most of us have someone we love in the vulnerable category, so this time we are all in the same storm. I know we are all in our own boats and we will be feeling this crisis in different ways but we are all at sea together. Strangely the leaking pipe caused me far more anxiety than the virus ! I hate broken things. I have been isolated both physically and mentally before. However this time around isolation is different as we have social media and many more ways to stay in touch. When Eloise was ill I was very isolated and lonely because of her diagnosis and prognosis so I just got on with it. I probably bottled far too much in until I started writing this blog 6 years ago. Then I created a safe outlet for my feelings. I’ve not written much in here recently as I’ve not needed to. I’ve found it easier to use Facebook as a way of expressing my grief since Warren’s death. Today it is 9 months since Warren died. So much has changed in the past year, it’s been difficult, challenging, sad,  exhausting, but with so much to be grateful for. It’s weird to think a pandemic has made my grief easier, I’ve had no flashbacks so far which is good going. I know there is still time but I feel hopeful. I think the two months I’ve had off of work have helped me. I thought it would be awful with too much time to over think and grieve for Warren but it happened at the right time. I was emotionally exhausted but I couldn’t really see it or get off the wheel of life. My mind has now had a holiday and I feel refreshed. I’ve not felt sad, low or depressed , I’ve not cried or felt alone, just some tension has left my body and my mind is more settled. I’ve let what I cannot control regarding Warren’s death go. My days have been filled with simple pleasures, time with my family, reading and far too much cake. I’ve not done any video calls, or Zoom or anything of that nature and that too was the right decision for me. 

        So here I am on the 23rd May, 18 years on with my Warrior maiden Eloise and another virus is causing fear, disruption, uncertainty and grief to so many.  I wonder how many people will now realise what is truly important in life, health and happiness and spending time with those we love. It really is that simple, it’s sad a virus had to remind us. Our lives were changed forever 18 years ago by a simple childhood virus and no I would never have chosen that to happen but it did and we have had to make every day of life count. I hope the lessons learnt from this period of time stay with us longer than the days we said we’d #bekind . People matter not things and the key workers truly have been heroes. 

              

Isolated

Isolated

Just thought I’d write a few things down regarding Covid-19 and the impact it’s having on me and my family. It’s possibly different to how you think I maybe feeling. 

           For the last few years since her 2 rejection episodes in 2013 we’ve pretty much been able to forget Eloise has had a heart transplant unless she’s at an outpatients clinic, having an angiogram, having blood tests or I’m trying to get her medical travel insurance. That’s the way we like it, please never take normal life for granted it’s what so many of us crave. The transplant world isn’t somewhere we chose to visit and while I’m happy to run a Heart Transplant support group I found when Eloise was unwell in 2013 I wanted to deal with what was happening by not posting in the group. I wanted to deal with what I was going through pretty much on my own as that was easier for me. Otherwise I’d have to support all the people who were worrying on our behalf, I didn’t have that extra energy. However I’m very happy to have found like minded (transplant) friends along the way. People who I’d have clicked with anyway as they are my kind ! In that way we are no longer isolated. 

      To me Eloise is special and she amazes me everyday with her attitude and resilience as well as her way of dealing with so many things. I also have three other amazing children with equally as important qualities and I’m so proud of them all. 

     So back to this virus, it’s making something I push to the back of my mind be right in focus. I can’t get away from it. I’m not one for hand sanitiser, or someone who worries about common infections. I’ve let Eloise do everything her siblings have done without scrubbing her down etc, just a normal grubby childhood of dirt and worms. Yet Eloise is vulnerable to this infection. Eloise is immunocompromised. Eloise has one of those underlying health conditions. Eloise is in a at risk group.  No one knows how someone with a lowered immunity post organ transplant will be if they catch covid -19 and I guess it’s best not to find out. So Eloise has stopped going to university. She was back at nursery 3 months post transplant and has done all the stages of schooling with her peers and now I’ve told her she’s different and it’s best she stays home. That’s what I’m struggling with but I know that I’m doing the right thing so I don’t need convincing but that doesn’t mean it makes acceptance any easier. 

       I just want normal back so I guess that’s just asking people who don’t have vulnerable family members to think of families like mine. To not just have the selfish well I’m ok attitude, to not judge those who are worried, to not take away the supplies and medication from those who need it more than you. How can we have gone so quickly from “Be Kind” to screw this every man for himself? How desperately sad.

       So please don’t think Eloise is in lock down because I’m scared, she’s actually currently roller skating around the park. She’s going to be mainly at home because it’s possible. Her university has been amazing, the technology is in place for lectures to be recorded along with all the slides, some lectures can be seen in real time and Eloise can join in ! She can also use Skype, the joys of Eloise being a tech and computer geek. We can still go outside to open places which is what Eloise prefers anyway. If I felt the restrictions were detrimental to her mental health I’d have to reconsider but she doesn’t get cabin fever like I do. At the moment the rest of the family will carry on as normal but we will continue to monitor the situation and take guidance from the transplant experts. I know I’m known for being laid back and that’s not particularly changed here, you have to consider that Eloise is now 19 years old, this is her life and her decisions to make.  I’m just here to support her and make her choices happen.

          

No Point in Pretending.

Valentine’s Day is looming in case you hadn’t noticed after the long January ! Everywhere  I look there are pink and red love hearts, displays of cheesy cards, soft toys, chocolates, candles and everything else they can flog for love. 

                 I was never that much of a romantic, thinking Valentine’s Day to be over commercialised and a bit of a joke. It’s one of those I appreciate you days like Mothers Day and Fathers Day which can also be tricky days for those who are bereaved.  When I was with Warren we decided to embrace it. We just bought each other small gifts and I also bought themed cupcakes, banners, tablewear, sweet treats , candles and little gifts for the children too like heart bath bombs, bubbles, stickers etc. Then Warren used to cook me a lovely meal or we’d go out to a local restaurant. We were often away for Valentines’s Day as it would coincide with half term. I think that’s what’s adding to my struggle. Other than 2009 as I was giving birth to Henry I’ve always gone away for February half term for a mini break. This year I cancelled our plans, I couldn’t face returning to a holiday house that we’d enjoyed as a family for two years previously without Warren. So at the minute I’m undecided as to whether to shield myself from Valentine’s Day or throw myself at it.     

                Another issue is hearts, I’m not a fan at the minute because of Warren’s heart disease and our broken hearts, that sounds so cliched but it’s hard to explain. I went off of hearts for a while after Eloise’s heart transplant, I know I’ve mentioned that before. It’s still early days but I think it doesn’t matter how much time has passed since Warren died certain dates, days, anniversaries will trigger memories and intensify my feelings of loss. I suppose Valentine’s Day is for couples, I’m no longer part of a couple, I’m no longer in a relationship but I used to be. 

           I’ve got time to think of what’s best for me, the day also falls on a Friday the day of the week Warren died on. I never put pressure on myself to act a certain way, I’m grieving in my own way, my terms. I am conscious that how I am doing this isn’t the way others behave but this is my life, my mind, my heart, my way of coping and living. I’m ignoring “the rules” as there simply isn’t a correct way to mourn the loss of a loved one.

     Let’s face it I’ll probably write to Warren and put it on Facebook for you all to read or scroll past, never feel you have to read my words or comment. Writing helps me to de-stress, it helps me to say what’s in my head, it keeps Warren’s memory alive and it keeps him in my thoughts. I can express myself in this way quite easily. If you do read my posts I hope they give you an insight into my grieving process and the reasoning behind it. I think it’s good to explore your innermost emotions and I find it most therapeutic. I’m writing this today after going in just five shops on the way home from work and being confronted by all things romantic ! Then thinking “oh hell, how am I going to do this?”

         I can’t bury the past, I like having it all in the open, I’m more comfortable with that. I like sharing my photographs and my memories. Warren existed, we existed as a couple too. We had a great five years, we just wanted more but I appreciate with the condition of Warren’s heart we were lucky to have had five years and lots of adventures. 

         Time for new traditions, I talked to Amelia earlier about us not going away this year and how tough that will be. She reminded me that we are going away at Easter to Edinburgh we’ve never been to Scotland so this is somewhere new for us to discover as a family. I can take the frogs so part of Warren is there as well. We don’t normally go away at Easter either. 

       Last year I went to Mrs Potts Chocolate House on 13th February with Sarah for Galentine’s Day we had a wonderful time so I’ve rebooked for this year. Another fairly new tradition , it’s good to spend time with my besties. Where would I be without my fabulous girl tribe ! 

      I’m all for self care so perhaps I can be my own valentine, we all need to love ourselves more didn’t we? Grieving is exhausting, I’m tired of it, yes I’m sleeping but there is the ache of tension between my shoulder blades. You’d not know from looking at me. I’m doing a fair bit of sighing and deep breathing and the need to be away and in a hot bubble bath of an evening is quite strong at the moment. A pretty conclusive sign that I’m having a moment or two. I’m so lucky that I know the signs. 

               Maybe I’ll buy a new candle in a tin, some flowers and chocolate. I received a heart shaped bath bomb earlier this week that’ll fit in with an evening of pampering. Lighting a lovely candle next to a photograph of Warren gives me a focus every evening. However if I’m thinking how Warren would rather be remembered I’m sure he’d rather I had a glass of something alcoholic and toasted his life ! I’m just not much of a drinker. The tradition could be thinking of Valentine’s Day as a day of Love, love for my family, my friends, my home and yipppeeee myself. 

              Just by writing all this down a cloud or two has lifted and I can think more clearly again. I just need to recognise my limits and go along with how I’m feeling nearer the date, I’ll set aside time in case it all becomes too overwhelming. Am I overthinking, maybe,  It’s just another day right? Next year will be easier ❤️