Life begins at.....


When I turned 50 I felt it was a new beginning, a time to look forward, to embrace my new life.

I was back at work, dipping my toe in online dating and busy with multiple writing and speaking engagements.

I was creating a new life, meeting new friends, carving out a new path....but things didn't feel right.

It took me to the point where I was at burnout to realise that in order to face and embrace the future I had to take care of the past.

I had spent many years caring, worrying about others, dealing with the multitude of curveballs, and challenges that life had put my way that I had lost sight of exactly who I was.

And now here I was, trying to navigate this new life without really knowing what I wanted from that life, not really know who I was anymore.

Two years later I feel like it's all a lot more clear, I just needed to give myself time. In order to move forward I needed to understand what had brought me to this point, and I realised that I'd really not done that properly...

In all the years of caring, of thinking about everyone else and their needs, I'd forgotten about myself.  So when I had the chance to think about my future and what I wanted from it, I found I couldn't.  Because I hadn't really had that luxury....the time and space to think about who I was and what I wanted from this next chapter in my life.

We're brought up to believe that being selfish is a bad thing, but perhaps, as carers, we need to be a little selfish occasionally in order to not forget who we are.  Caring can become so all-consuming that we lose sight of ourselves....our identity becomes wrapped up in what we do and it's really easy to just lose ourselves in all the constant plate-spinning and tail-chasing.

I needed to unpick all the layers to remind myself of who I was, before I was a wife, a mother, a carer, an advocate..and then I needed to understand how all of those life experiences had shaped and moulded me so that I could start, at last, to think about what I wanted for myself.

I often get invited to speak about the role of carers and someone always asks me what advice I would give to carers based on my own personal experience.  It's always the same; "don't lose sight of yourself". I don't have all the answers for how you do that, hell I'm just marking two years of intensive therapy just to be able to think about what I want for the next stage of my life. But find a way to be a little more selfish, to reflect on your own needs. Write, paint, talk...find a way to celebrate yourself and remind yourself that all the time you are advocating for your child or loved one, reminding professionals to see the person not the disease, it's important to give yourself the same advice...see the person you are, who you were and who you will be.

Turning 50 was a transition for me, I entered that new decade thinking that I would be able to flick a switch and begin to move forward, but it's only now, two years in I am starting to feel comfortable in doing that.  I no longer feel that I'm flailing around in the ocean, looking for land, I know where I am now and who I am and where I want to go.  Most of all I've been kind to myself and given myself time to reflect in order to begin to look forward.

I can't go back in time and remind myself not to lose sight of myself, but I can use this blog to remind other carers to do so.

In the midst of all of your caring and giving of yourself, don't lose yourself, you still have hopes and dreams and you are you....please don't ever forget that.


Protecting the herd

I just can't help thinking, if Daisy was still alive, what would it be like? How would we have coped - she would have been one of the so-called "shielded ones", those who received a letter at the beginning of lockdown  telling them to stay at home for twelve weeks and not venture outside.

Picture of Daisy in her wheelchair in the back of her wheelchair van. She is smiling and happy , on her way to school

Her school is closed. She barely went to school in her final year anyway, there were so many problems trying to get nurses able to be with her in school and I was concerned for her safety.  So I guess I would have been attempting to home school her.  She would have been missing her friends, missing walks in the park, her regular trips to the local shops which she loved so much.

The invisible army

Photo credit: George Arthur Plueger @Unsplash

I was struck by the comments of two friends this week on social media which did more than anything to help me understand the true plight of the staff who are caring for people in residential homes during this pandemic.

One friend is a doctor in Scotland, she often has to make visits to care homes, it's part of the normal workload of a busy GP .  She told me that while staff nursing Covid patients in an ITU are in the front line, the viral load when someone is dying is high, wherever your care facility is.  And as we know, now that our government has at long last included care home deaths, a lot of residents are dying.

My friend then commented that given this situation she sees the staff in care homes working in the same PPE (or less) than she would wear to see someone with appendicitis....gloves, maybe a plastic apron...

And later that evening another friend posted on twitter that she had been laying awake thinking about the care home staff she had met that day.  She is normally a hospital-based palliative care nurse but is part of a special team which certifies deaths in care homes during the pandemic.

She is seeing first hand what the staff are having to deal with.  The nurse in charge of one of the homes she visited that day was 81, vulnerable and high risk herself but a dedicated nurse through and through, putting her life on the line. 25 of the 90 residents in that home were Covid positive and the staff were doing what they could to protect themselves and the other residents.

These carers are the invisible army.

They work for low pay in residential care homes across the UK, looking after our senior citizens.  They get to know them as people, their lives, their stories, their families.  And when one of their residents dies they are the last people to see them alive.

Frontline staff in an  ITU don't have time to form these bonds with their patients, not in the same way as carers in residential homes.  They are the invisible army and they are as much at the forefront of the pandemic as the staff in hospitals.

Today the government included the statistics for care home deaths in their overall Covid death rates.

It's harrowing.

And it puts into perspective how our broken and underfunded social care system is struggling under the burden of the Covid pandemic as thousands die in homes where staff lack equipment and resources to protect themselves and other residents.

And to know that day in day out there are people risking their own lives with minimal support and protection - it's sobering.

"What can I do? What can we do?" I asked my friends.

There is no answer. This is not a problem we can solve but all we can do is show that we see them, we know what they are facing, we feel their pain as a resident they have cared for, often for years, succumbs to this awful virus....

My GP friend put out a call for donations of snacks for the carers, so that she could drop them off.  She knows that on the world scale of things it wont make a difference but it shows that they are seen.

Maybe when we are thinking about taking cakes and treats to hospital staff we could also include the invisible army facing an impossible task.

If you make masks or scrubs, maybe drop some off to your nearest residential care home. Or just leave a box of biscuits at the front door, with a note to say "I see you, I appreciate you".

These are the people who care for our senior citizens, people who deserve better as they care for people in their final days.

Let's shine a light on them, they deserve so much better.

Maybe it took Covid19 to open our eyes ?

I remember the weeks after Daisy's birth, when she was in the neonatal unit, and the hours turned to days, the days turned to weeks and the weeks turned into months....two long months.

I remember feeling numb and scared and confused at first and then, I settled into a routine, I went with the flow.

It was December when Daisy was born, just three days before Christmas.  The lights and decorations were up, the weather was dark and stormy and the big tree outside the neonatal unit was bare of leaves.

By the time she was discharged, two months later, the evenings were slowly getting lighter, there was a sense of impending spring in the air as the first leaves appeared on the tree and the Christmas decorations had been replaced with easter eggs.

And in a strangely familiar way I've settled into lockdown life.  From my previous post of feeling as though I was being put back into my gilded cage I now feel very peaceful, I can't change the situation but now I've reframed how I feel about it.

This is a time to stop, the whole world is on pause, I'm not going to miss anything. It's a bonus extra time with my children, I have often felt guilty about the time I missed with them when they were growing up and I was caring for Daisy, torn between home and hospital, I didn't anticipate this time would come but it has and while it's not always smooth sailing at home with four very strong and very different personalities under one roof, I know I will never have this time them again.

Yes there is a daily battle about the state of the kitchen and who is going to put the bins out.  They seem to sleep an inordinate amount of time and when not sleeping they eat, a lot.  I'm trying to juggle work commitments with being with them, and yes, still homeschooling (I still have one in full time compulsory education after all). But we are enjoying family time together, cooking on the barbecue, getting creative about what is available in the shops and planning menus around it. I am learning how to master the playstation (game of choice is COD: Modern Warfare, for such a pacifist I really like to shoot machine guns!), I'm getting to grips with the house admin and paperwork, I'm still managing to do some freelance work, I'm writing, I'm catching up with friends online, as always I'm running - but most importantly I'm resting and enjoying the slower pace of life, the peace...I'm taking time literally and figuratively to smell the roses.

When this crisis hit my instinct was to go into my default hyper-vigilant mode, to busy myself and to think about what I could do to help.  I wanted to be on the frontline, I have skills in this area, I am used to being around very sick people, I was exploring healthcare assistant roles, ward domestic roles...anywhere I could help.  But I stopped, because I realised that my kids need me, I don't need to contribute to anymore anxiety by putting myself at risk of exposure to Covid.  It's time to be selfish for once and just slow down.

And it's a good feeling.  Having this time.  It's allowed me to reflect on the things that I care about, the causes that I talk about .

I really hope that when this is over things will change.  For me the learning has been very personal, that it's OK to slow down, that it's OK to put myself first.

But for the world I really hope that we take away two things:

Medicine doesn't have all the answers - this has been the starkest wake-up call for the world. I knew that for years, I knew that the team treating Daisy did not have a magic wand in their back pockets to make her better, to keep her alive until adulthood, I still remember a registrar at Great Ormond Street telling me that "when we get to this level of medical complexity it's all academic guesswork" and I accepted that, I still looked for possible ways we could help Daisy in my quest to leave no stone unturned but ultimately I knew that no matter how brilliant science is, it doesn't have all the answers.

And this is the world we are facing now, we are forced to peep out from our sanitised view of health and face some stark realities.  As you know, I write and speak regularly about the importance of vaccination for healthy communities and to protect the vulnerable.  Now, we are all vulnerable, there is no vaccine or treatment for this disease and we are still learning how it impacts different members of our community.

This is the world where medicine does not have all the answers, were we have to become more self reliant, where we have to think about taking care of ourselves and those around us.  This is what the world is like when there is no vaccine to protect us.

And the other thing that the Covid pandemic has taught us is that we all live finite lives.  That death is inevitable and sometimes it visits when we least expect.

If you read my blog regularly you know this (here's a particularly relevant post).  The scale of death and illness that this virus has spread is unspeakable. It breaks my heart that dying people are separated from their loved ones in their final hours, that those left behind can't find solace in a funeral gathering.

Now more than ever it's important to "get our affairs in order" - that curiously victorian is the time to speak to our loved ones about our wishes, about resuscitation, about funerals, about wills, all those things we put off or think are for people who are dying or older, they are for all of us.

I know there is so much pressure for those of us to stay at home to use this time productively: bake stuff, make stuff, do zoom fitness, learn a skill....a few years ago that would have been me, hyperbusy to avoid actually thinking about things, now maybe the best thing we can do is to just be calm and reflect and enjoy this time.

But the most important thing we can use this time to do is to sort out those big things on our to do list that we really have not wanted to do, we ALL need to "get out affairs in order" no matter our age or health status, and this means the following:

1. Make a will - even more important if you have children under 18, what happens to them if you don't name guardians for them? Do you want to be buried or cremated? Where do you want your ashes scattered? Who is going to end up with your prized collection of gig tickets and festival lanyards?

2.Write an advance directive.  I've written about this here . It's about thinking about your wishes should you find yourself in a resuscitation situation or unable to communicate for yourself.  It's not just about DNARs (do not attempt active resuscitation) it's also about ensuring you communicate your wishes for full active resuscitation in certain scenarios. This is especially important if you are in a situation where you can't speak for yourself.

3. Sort out some life insurance if you have dependent children.  Without life insurance when Andy died we would have lost our home, the only certainty and stability my children had in their lives, the place where they feel safe.

4. Think about your digital legacy. This is another thing I've spoken about a lot; what happens to your social media if you die?  who knows how to get into your phone contacts, your email, your bank account?  Make a list, you don't have to give it to someone but ensure that at least one person knows where it is in case of your unexpected death.  Think about legacy contacts for your social media, I still have access to Andy's facebook information because he assigned me as his legacy contact (he also wrote down all of his passwords and log ins before he died), if I did not have this there was a risk of his account being deleted and along with that all the photos and videos and posts that he had made.

Sadly it's taken Covid19 to open our eyes to these important things, but it's also given us some precious time to pause and reflect and regroup and think about how we want to live our lives when this is all over.

Right, that's it, I'm off for my daily exercise, of course I don't walk, I run, some things will never change!

Sending love to all of my lovely friends working on the NHS frontline - stay safe, you are always in my thoughts 🌈

The little things, they really are the big things

It would not be an understatement to say that this time, this strange dystopian time of lockdown and social distancing, has been really tough for me.

Having cared for a  child who was frequently immunosuppressed for twelve years,  the concept of social isolation is not a new one.  In fact for all of my friends who care for children with complex needs this is not a new situation. Having to stay at home to avoid infection, practicing aseptic non touch technique, meticulously washing hands, keeping germ free....this was our life for so many years.  Staring at the four magnolia walls of an NHS hospital was my world.

This is a picture of Andy, going through chemo, FaceTiming Daisy who was in the next room as he was immunosuppressed and Daisy was colonised with some pretty nasty bacteria.  We know all about social isolation to protect the vulnerable here....

It's felt tough, having tasted freedom after years of cancelled gigs, holidays, wasted food plans were thrown awry when Daisy became suddenly and unpredictably felt like I was going back into my gilded cage.  No novelty to it, it's a world I know well.

I've felt vulnerable and alone, missing Andy as I try and keep my children safe and be the strong adult once again for them, knowing that despite the fact that they are now teenagers/young adults, I am the one they look to.  I feel a sense of deja vu as we shut the door and hunker down...this was  our life for years... no choice, no freedom, just an institutionalised life of hospitals and unpredictability. 

Yes...the PTSD has  reared it's head.

But I'm in a different place  I can't deny it's hard but I'm trying to reframe it all.  I am better equipped than most people for this life.  After all it's one I know well.  And this time, it's all of us, I'm not alone.

When I speak at conferences I'm often asked what is the one thing I'd like to tell people who have found themselves in circumstances where their lives, like mine, are turned upside down....

The little things are really the big things......

Anyone who has heard me speak knows this.  That's what life with Daisy taught me.

I have never ever taken for granted the little things.

A walk in the park

Time with my family

Sitting on the sofa

Sitting at the dining table

Food together

Being together

The little things

They really are the big things aren't they?

That's the one thing I hope we all take away from this time.  An appreciation of what we have, not what we don't have.  While I struggle to keep my PTSD in check I remind myself of this.

Even though I've been taken back to a time I remember, even though I miss Andy and Daisy more than ever .....

The loneliness is hard, the isolation...but it's not forever. 

We'll get our lives back...and maybe by experiencing just a little of the lives that are lived by so many carers and people isolated by chronic illnesses the lives we get back will be more enriched, our eyes opened.

Most importantly I hope that we will all learn that the little things are really the big things.... take nothing for granted.

Faces behind the fight - Lisa

I'm going to share some of the faces behind the fight.The people who are working to keep us safe, to counter the threat of Covid19.  I keep thinking about all of my lovely friends in the NHS, London Ambulance and emergency services  People who kept Daisy, and Andy, safe and well.  I feel so helpless....I want to be able to help, so I'm using my platform to share some of the faces behind the fight, people I know who are working to help us during this unprecedented time.

Say hello to my friend Lisa. 

We were at boarding school together. She's a doctor, an out of hours GP in a busy Edinburgh hospital. When Daisy was dying she was there, on the end of the phone, all night, answering my questions. Now she's on the front line, treating people with suspected Covid19. She's putting her life at risk, night after night,, day after day,  being exposed to the virus. Her husband is sleeping on the sofa, her kids can't hug her. 

She's there frontlining, treating the sickest, the dying. She doesn't do it for the money, she does it because this is what you do, when you have the skills and experience....she's the kindest, most generous person I know. I want her to be safe but I know if I was fighting for breath at home and the 111 service sent a doctor out to assess me, I'd want it to be Lisa, because she'd fight tooth and nail for me. I

 stood outside my house and #ClappedForCarers tonight - for Lisa, for the nurses, doctors an carers who supported Daisy and Andy, for everyone who is going through this, for all of us. 

Do your bit, stay at home, flatten the curve, make sure Lisa can hug her kids again, when this is over, please.

Is this the wake up call?

I was in Dublin last week for a little mini break and I did what every visitor to Dublin does, I went to the Guinness Brewery and took a tour. While I was there I watched a presentation about the Guinness Family, and about Arthur Guinness, and his wife Olivia.  They had  21 children, only 10 of them survived to maturity.

OK, so that's a lot of kids, but the statistics were still the same, without antibiotics, without immunisations, children died, babies died.  Death was all around; you just need to visit a cemetery to gain some perspective, you can spot the graves of the people who died in the Spanish flu pandemic in 1918. Now we can vaccinate against common strains of flu, against polio, against measles and so many other diseases....

We are no longer surrounded by death, modern science sanitised us and saved us, wiped out diseases that once struck fear into the hearts of parents and we have fallen into an easy complacency, confident that modern medicine will have the answers.

 We have come to rely on wellness and on science being able to help, to intervene, to make things better.

And this is why we are currently paralysed by shock and fear.

This new mutated virus, Covid 19, a corona virus, has reminded us of our frailty, that medicine is not infallible, that it does not have all the answers.

Those of us who care or who have cared for the sickest and most vulnerable of our society know that already.  We are professionals at hand washing and infection control, the majority of us will take up offers of vaccinations if the person we care for is able to have it, after all why expose them to any further risk?

 We tell people to stay away if they they have a communicable disease, knowing that for the person we care for even a simple cold can end up with a hospital stay.

This is the reality of thousands, day in day out, forced to self isolate in order to protect their loved one

And now we have a global pandemic and I see people questioning government and health professional advice, panic buying, confused and complaining.

So here are some facts as I , as simple lay person who just happens to have a lot of health care experience, understands them.

Yes Covid is in many cases just like a bad cold.  But in some people it's not, in the weak, the immunosuppressed, the vulnerable, it's more than that, it can be fatal.

This evening I read that there are 900 people in Italy in intensive care, 900 people needing ventilators to breathe.  A simple cold to one person is a death sentence to another .

And because this virus has never been seen before and therefore there is no herd immunity, that's why if we suspect we may have it, we need to self isolate, to protect others.

It's not for ourselves, if we are strong and healthy, hopefully we won't need hospital care.  But it's for those who are not, for those who can't fight it.  It's about them not us, it's about protecting the most vulnerable of our citizens.

And those who care for them and those we rely on to care for us.

If we are ill we expect doctors and nurses to be there, but what if they are ill?

And this is why I support vaccination....this is what our world would be like if we did not have vaccinations, only multiple times worse.  We are seeing deaths from Covid 19 and are shocked.  This is the reality when we don't have immunity to a virus.

So what can you do?

From where I sit , I am now in a position of privilege.  For 12 years I cared for a very fragile child who spent a lot of her time bouncing in and out of hospital, susceptible to infection, especially in her final years.  I spent a year caring for her daddy as his immune system was wiped out by chemo.  I needed to be well to care for them and keep them safe.  If I was in that situation now I would put our house on lock down. But to know that the less vulnerable people in our community were able to protect me and my family, that's what I would have needed.

So look around, who lives nearby who may be at risk, for whom contracting Covid 19 will be far worse than "just a simple cold".  Minimise your risk of spread by meticulous hand-washing - why does it take this pandemic to hammer this home?  Didn't we talk about this when there was a lot of scaremongering about MRSA and Cdiff...hand-washing was and will always be a simple precaution that we should all do, pandemic or not, to prevent cross infection and protect the vulnerable.  Those of us who care for the vulnerable know that.

And the other thing, if you are shopping and stock piling, why not buy for two? Stop being selfish, think about the people who are genuinely in need, knock on their door, ask them if they need anything, deliver a bag of groceries.

If you have ever posted a "be more kind" meme then this is your chance to put it into action. Get to know the members of our society who are more vulnerable, less privileged and help them, protect them.

Oh and lastly, maybe, just maybe, this is the wake up call you need if you have ever wavered , that vaccines are a good thing , they protect the weak and vulnerable....this is a glimpse into a world where vaccines didn't exist, where people died where parents lived in you really want to return to that world?

This is our wake up call.

What's your grief

This is the last ever picture I shared of Daisy before she died.  It's the day before she died, she was deteriorating but had not reached crisis and the point of no return.  I had asked for a visit from one of the hospital's Pets as Therapy dogs as Daisy was so sad and missing home and really missing her dog. 

This visit was a stop gap, I had plans in place to bring her beloved dog Pluto to the hospital to meet her, by hook or by crook, at the hospital entrance so that they could be together and he could hopefully cheer her up, she was asking for him constantly.....

The visit from Pluto never happened....24 hours after this picture was taken, Daisy had taken her last breath...

And this picture makes me sad, because it's a reminder of that last promise that I was not able to keep. All she wanted was to go home, and most of all to see her dog who she loved so much.

I know I did everything possible during Daisy's life to make her happy.  I fought to ensure that she was seen as a little girl and spent as much time as possible doing the things she loved.  I advocated for her to get her the support she needed, I trained to administer the most complex of regimens to keep her out of hospital....I know I did everything for her....

....but grief can cloud your rational brain.....

Tonight it's three years since that picture was taken, it's the night before the third anniversary of Daisy's death and seeing that picture made me sad. Sad that despite everything else I had done, I didn't do that one last thing for her, even though I know events took over, even though my rational brain is screaming that I'm wrong, I still feel sad.

Grief is a really is.  Those five stages of grief that we are supposed to move through: denialangerbargainingdepression and acceptance , I can confirm that grief isn't like that.

Grief makes you think in an irrational way, it makes you lose logic and reasoning.  And then when you think you've got the better of it, it comes back, through a smell, a sound, a taste, a touch, a photograph....and you are right back in the moment.

I have learned a lot about grief over the years. It affects us all so differently.  It isn't always the keening women at a wake, or the tears and widows weeds.  For me it's been channelled into doing,  into making meaning of all of the things that have happened to me.  Keeping memories alive and using my experience to help others.

Grief doesn't have a pattern or a predictability, it isn't a stereotype.  It's something I carry with me, always.  And it doesn't make me a sad person.  Well sometimes it does, when something unexpected hits me , out of the blue, like this photograph.  And then, very privately I allow my tears to fall.

Despite my decision to share so much of my life with Daisy through this blog I am actually very private, my grief is mine.  It's my burden to carry. And I will always carry it, tucked away inside me, it's a part of me that will always be there.  It waxes and wanes....

The anniversaries are the hard times and time, while it lessens the intensity, doesn't heal. Three years since that last time I held Daisy, I live every moment leading up to it, like it was yesterday, I allow my grief to surface and to take me back to that place....I need to do it, I need to connect with my daughter, I need to remember....I'm scared to forget.

I am scared that if I don't feel it that she will slip away and the umbilical connection I have with her will be finally severed...and I'm not ready for that yet.

I'll tgo back to the hospital tomorrow, to the chapel where we held her wonderful memorial service.  I'll go to the place where the big book is kept, every day the page is turned and tomorrow it will be January 31st , and I will see her name inscribed in the book....the day she died.

I'll have a cry and a moment of reflection. Then I'll tuck my grief back deep inside me, living with me always. My life, my grief.