There’s an assumption isn’t there, that being a mother is something to celebrate? Don’t get me wrong, for lots of women, it is! But not for everyone. I’m not being all ‘bah humbug’ and will celebrate the lives of my children until I take my last breath. They are my proudest achievement! I cannot, however, celebrate being a mother, not today anyway… Today I am not a good mother. This week has been my most difficult as a parent, ever, and I have let one of my children down in the most devastating of ways. I didn’t see that he was struggling. I didn’t see that he needed me to take control. I naively trusted that having reached adulthood, my role as parent was somehow diminished. How wrong was I? My son had a mental health crisis of such significance that he wanted to die. Imagine hearing those words coming from one of your children? Dealing with the actual breakdown was difficult enough. I have never seen someone in such despair, lost to the world, shut down and unreachable. But I could manage that. I could control the situation until I could reach him again and coax fragments of communication from his tormented state. But hearing him say he wants to die has ripped through me and devastated me in a way I never believed possible. How didn’t I see this coming? My own son. How lost and unloved must he have felt to have reached that conclusion? I have let him down in the biggest way possible and I will never forgive myself for that. So yeah, I’m not celebrating being a mother today. I just hope we can get through this and help him to rebuild his life so that he can be happy. Every time I look into his hollow eyes I wonder if we will ever see him smile again… I’m so sorry Tom.

There is another assumption that being a mother should make you happy. But for lots of people that is not the case. Being a parent can be difficult and challenging and about as far from happiness as you can get. Being a parent is often not all it cracked up to be. The things you don’t consider when you plan your perfect family in the throes of youth. Behavioural problems, health problems, financial worries, emotional issues, children that don’t eat or sleep… anything that disrupts that picture perfect family in your mind’s eye. Instantly the extra pressure affects your ability to be happy about every aspect of parenthood. My boys are a major source of happiness for me. In the grand scheme of things, and the last week apart, despite the difficulties we have faced over the years, I can say, hand on heart that my children always make me happy. When I think of them my automatic reaction is to smile. But that is not the same as my feelings about motherhood. Not entirely separate but at the same time inducing different feelings. Thankfully. My boys are wonderful human beings despite my apparent lack of parenting skill. I will always be grateful for that. Nobody teaches you this stuff. Nobody tells you how hard it can be. Nobody tells you how soul-destroying it feels when you get it wrong. I lost focus for a moment, distracted by work and others making demands on my time and energy and emotions. A moment was all it took.

I’m going to leave it there. Short and sweet following a very difficult week. Feelings are still raw and close to the surface. Still so much to deal with. I can feel myself sinking into that vat of despair so I need to pull myself back up and carry on hiding behind posts on social media about hair and cake to distract the rest of the world from how I really feel right now. I don’t want to be miserable, believe me. Life is so much harder when you’re sad. But I just need a moment to deal with some crappy, crappy stuff and then normal service will resume. So tomorrow I will be the me everyone needs me to be, just long enough to get me through my shift… I will say a heartfelt Happy Mother’s Day to those who are celebrating today and the sincerest love to those who, like me, do not feel able to. Be kind to yourself xx

My colleagues are not just people I work with. We form a special kind of sisterhood, sharing amazing highs and devastating lows, supporting each other, we laugh together and cry together and share intimate details of our lives. We often spend more time with each other than we spend with our families. We are a team in every sense of the word. These women are not simply colleagues, often friendships form which extend far beyond the workplace. A shared passion to care and other similar interests allow friendships to blossom. I am closer to some of these wonderful women than I am to members of my own family. We care about each other. Some people go to work simply to do a job, then they go home and switch off and don’t think about that job until they go back to work the next day. We aren’t afforded that luxury. It’s difficult to switch off. You worry about things that have happened. You worry about other people who are having a hard time. You worry about things you have done and things you haven’t, and the inevitable consequences of that. We spend a lot of our ‘free’ time checking people are ok, supporting those who aren’t, seeking support ourselves after a bad shift, a bad day. We do this because we are a team, because we care.

And then the pandemic happened. Our numbers diminished to necessarily protect the very vulnerable among us. A smaller, but tight-knit group, we battled the virus, we battled against the increased pressures that working during a pandemic brought, the restrictions, the PPE, the changes to our daily routine and working practices all taking their toll. It has been an enduring battle with little respite and no end in sight. Despite evidence now that it is a battle that we can actually win, it feels as though it will never end. That life will never return to the old ‘normal’, the life we knew and took for granted before the pandemic. When you are exhausted and emotional, little things become big things. Small changes become big changes, almost insurmountable when you are just trying to make it through the day. Tired eyes and deflated spirits hide behind masks and visors. Don’t look for the hidden smile behind that mask, it’s no longer there. We lift our voices an octave when talking to the women in feigned jollity, wondering whether they can hear the obvious strain behind the pretence? The women in our care feel wronged by the restrictions brought about by the pandemic, the implication being that we don’t care. But we do care. If only we could tell you how much we care! How upset we feel when you are upset. We have not lost our compassion or our dedication to a profession we love. We go away and shed tears and lose sleep and torment ourselves because we can’t make it better. We spend hours counselling one another, trying to ensure that we can come back and do it all again another day. We are an amazing group of women but our strength lies in our bonds with one another. As a team we are a force to be reckoned with! Those bonds have weakened recently and we need to continue to bolster one another. We don’t know what people have going on in their personal lives, those who should be commended quite simply for coming to work everyday. So those who can go the extra mile, can give that extra support, are able to raise a smile or simply make the day a little bit easier for those who need it, should know how much that means and how grateful we are. We are a team.

I hope that things will get easier soon. I hope the additional pressures at work will soon be eased. I hope the people who are currently unable to work can return soon with the additional strength and vigour the rest of us need to reinforce those bonds between us. I hope the people experiencing personal difficulties know that there are people who care. I hope we can carry on being amazing support to one another. I hope we can get back to doing the little things that lift our spirits, a cup of tea and a slice of cake goes a long way in my world. I hope we can return to a life where social activities can resume to help us all boost our emotional and mental health and well-being. I hope we can soon return to a place where we can share joy and celebrate milestones and achievements in a meaningful way. I hope we can get back to a place where a hug or a squeeze of a hand is enough to show how much we care. At the end of the day, at least we still have hope… 🌈

I need to start this post with a photograph to really illustrate my point. So prepare yourself for what my mum would describe as a Tena Lady moment…

It’s a bit blurry but that can only be a good thing! Imagine waking up every morning and seeing Leo Sayer when you look in the mirror… I’m probably doing Leo Sayer a disservice but I’m right, aren’t I? The resemblance is scary. Of course, I’m now wondering whether I look any less Leo Sayerish when I’ve attempted to tame my mane a bit? Please don’t feel the need to answer that particular question for me…. So in an attempt to address the Leo Sayerishness of my Covid lockdown wild hair, and to adhere to the uniform policy at work, I decided that tying it back was the answer. How hard could it be? I googled it and watched numerous YouTube videos demonstrating up dos for short hair that even a five year old could master… but apparently I couldn’t?! Leo Sayer hair does not conform to simple YouTube instructions. It does not lie flat against your head when scraped back, nor will it sit neatly in plaits or a pony tail. Plaits, seriously, who am I trying to kid?! Never a good look! I wanted something age appropriate and verging on sophisticated but achievable with an early morning tremor and absolutely no skill… plus the layered wavy nature of my Covid hair could not be ignored. And then I had a moment of inspiration! Being an 80s throwback myself, I knew the answer lay with the good old banana clip! That would successfully address all the issues associated with tying up Leo Sayer hair, I was certain… Minutes later, I had banana clips aplenty winging their way to me by virtue of Amazon prime… and of course it’s impossible to just buy one. And so, I give you, the banana clip! I feel like this is an appropriate Ta Daa moment…

What I quickly discovered was that it’s impossible to take a decent photo of the back of my head. It sort of worked… after I had spent 10 minutes trying to open the bloody thing! I don’t remember them being so challenging back in the day?! However, my abnormally large, oddly shaped cranium did not fit the smooth curve of the clip, causing it to slip down my head, releasing wispy curls as it went… not exactly the sophisticated look I was going for. So if anyone with a normally shaped head, needs a job lot of banana clips anytime soon, I’m your woman.

And before I move on to the actual point of this post because surprisingly it wasn’t banana clips, I must address the rather large elephant in the room… the T shirt I’m wearing in that photo. Parkinson’s UK sent it to me. It’s a proper T shirt for people who do proper exercise. It’s made of that lovely silky fabric with tiny holes in it to make it breathable. However, I don’t do proper exercise, or any exercise that warrants a T shirt that can breathe… So now I’m wondering whether I’ve signed up for something??? Eek! Happy to raise awareness though Parkinson’s UK…. next time though, something a bit less form-fitting because an elephant with Leo Sayer hair will struggle to pull this one off!

The title of this post is The Man in the Mirror which is a nod to the fact that I have Leo Sayer staring back at me every time I see my reflection, but actually my point relates more to the lyrics of the song of the same name. The song talks about changing the world by changing yourself. Lots of people are quick to complain about things or bemoan the way their life has turned out but that’s all they do, complain and moan. How is that helpful? I am at an emotional down point in my life. Yesterday it overwhelmed me. I sobbed in the shower. I needed that release but acknowledged that crying about my situation hadn’t improved it or changed anything. So I got dressed and did something about it and yesterday turned into a good day! You can’t change the world in one day but you can do little things that will eventually change your story. It’s ok to be sad. I’m sad a lot of the time at the moment but there is a distinct difference between being sad and being miserable. If you don’t like what you see in the mirror, change it! It’s so easy to accept the terrible things that happen in life as happening for a reason and being something you obviously deserve… it’s much harder to change your life and your attitude despite these things. But you can! I could sit here and list all the things that have happened that I didn’t plan for, didn’t want, and that changed my story to one I would never have chosen to write, but that would only serve to justify my sadness and objectify my misery. Where is the benefit in that? Instead, I am looking at the positives and the little things that lift my spirit and give me a reason to smile. And they are there if you look. Stop waiting for something amazing to happen, for someone else to change your story. You’ll be waiting for a long time. And just think of all the time you’ve wasted, feeling miserable. Appreciate what you have, a home, family, a job, friends, pets… there are so many things to feel grateful for, so many reasons to smile…

I thought I was unlucky. I thought I’d been dealt a crappy hand in life. I spent too much time bemoaning my lot in life. I wasted too much time wallowing in the depths of unfounded despair based entirely on my own perception of my future. And then, 5 months ago, something happened which will change my outlook on life forever. Something so terrible, so devastating, so life-changing, so unimaginable… it didn’t happen to me but the impact on me and my family has been massive. Our lives have changed forever. We are now dedicated to another human being, bound by family ties, as the only relatives who can take on the responsibility and do what needs to be done. There is no question of walking away or denying her our time, our love, our care, our compassion. But balancing that with work and family and home life and health is impossible. It simply can’t be done. How can you prioritise your needs when someone else’s needs are far greater?! So you don’t. You give everything you have to everyone else and hope against hope that after they have all taken a little piece of you, that there is enough left for you not to break… It’s a fine line to walk. You live on the edge of exhausted hysteria, unable to take full control, unable to choose the path you now take. And you still can’t do enough, can’t be enough. So you just feel inherently sad.

But then you remember where you were a year ago. How you felt about your life 6 months ago. Your perspective has shifted. It takes something terrible for you to accept your lot and realise that actually your life was ok before. Perhaps you weren’t following a path you would have necessarily chosen, but it was so much better than the path you have been forced down now. Appreciate the little things, be grateful for family and friends and health. Don’t spend your life striving for bigger and better, don’t live a life of envy and regret. Appreciate the people who love you and the life that you have today. My future is not what I would have chosen but at least I have one, eh?! Find something to smile about and give someone a hug. Life is what you make it. Don’t waste it wishing it was something else…

That’s enough doom and gloom! I have to document it though. It helps me to accept it and rationalise it and therefore continue to function and present the version of me that everyone expects to see. It helps me to dig deep and get a grip and hide the cracks that are forming. It allows me to move on and tell a funny story about the dog without feeling guilty that I do still have funny moments and therefore stories to tell… brace yourselves!

Picture the scene: me, wellies, big coat, torch, phone, hound – pitch black, freezing cold, video calling my mother as I walk the dog on the by now notorious extending lead. So we’re walking and mother and I are having our usual technically difficult phone call involving her saying ‘hello’ repeatedly and me mouthing ‘hello’ back at her without actually speaking because I think I’m hilarious. I’m generally oblivious of the hound trotting along beside me until he shoots off in the opposite direction, reaches the limit of his lead with a resounding jolt which yanks me off my feet and pulls my arm out of it’s socket. Cursing loudly, I peer out of the furry confines of the hood of my big coat to establish whether anyone else is risking a walk in our immediate vicinity… all clear, I think… I reach down and unhook the lead, unleashing the hound of little brain into the wilderness. He bounds off gleefully, delirious with joy at his new found freedom, unfettered, he disappears into the distance until only the little blue light on his harness is visible on the dim horizon. As the light fades, I am aware that I can no longer see him. My mother is telling me the plot line of a drama that is quite factually incorrect and I smirk as I turn my attention to my now missing dog and register the honking of geese far into the distance. I call him. Nothing. I call again… and again. Still nothing. My mother has moved on to the weather ‘up north’ and I briefly acknowledge what she is saying before turning my attention back to the missing canine. I call his name, louder this time. More geese honking and then the faintest of blue lights, far into the distance, in a completely different direction to the one he had disappeared into. I watch as he hurtles towards me at great speed. His trajectory is unwavering and it’s not until he slams into my legs that I notice he is dripping wet. I regain my balance and reach for the now soggy dog. He avoids my grasp and shoots off again, this time circling me widely, tongue lolling, clearly having the time of his life as he bounces happily around me. I reach for him again and this time managed to grab the convenient handle on top of his harness. He gave a disgruntled grunt, upset that his foray with freedom is over, but allowed me to clip the lead to his harness. Satisfied that I had him adequately restrained, I turned my attention back to my mother who had moved on to her dietary intake for the day… Suddenly there was a load whirring sound and a jolt in the hand holding the lead, and it quickly became evident that the lead was no longer attached to the dog. In fact he had chewed through it while I was distracted and the chewed end had then shot back into the handle, never to be seen again! I stood there for a second, trying to register what had just happened. There was no way of reattaching the lead. I was about a mile away from home. There was no way the dog of little brain could be trusted to walk home without a lead, after all this is the dog who chases imaginary squirrels! There was also no way I could carry him! Panic rising and imagining I would have to spend the night in the wilderness… I had a lightbulb moment, a flash of divine inspiration so good I surprised myself! I was wearing a scarf. It was long enough that I could loop it through the handle on his harness and we could walk home. It’s a lovely scarf… was a lovely scarf… lovely and soft, red with muted stars on it. We set off towards home, Obi unimpressed by his now restricted freedom zig-zagging dangerously underfoot and throwing me off balance. I shrieked as I slid along the muddy path, fighting to regain some semblance of control. And then he did the unthinkable… Yep, he cocked his leg over the free end of my beautiful scarf. Current Google searches include ‘chew proof dog leads for knob dogs’ and, ‘can I wash my beautiful scarf?’! And I’m still smiling….

How many of us would choose the family we have given that choice? The people we call family, by birth, by blood, by marriage, by chance or by choice. The people with whom we share the same genes and physical features, the same name? And then there is the family we choose by default. The family of partners, spouses, significant others. Not a choice exactly but more of an active decision to have those people in your life, more so than your own flesh and blood. These people offer you a glimpse of a different past and present which can lead to an equally different future. Different is not always better. Equally, different can be good. Different shaped the person you have chosen to spend the rest of your life with. Their difference will shape your future together. The ties that bind you to these people are often strong and difficult to break. Ties formed from promises and wishes and truths and history. And guilt. Ties to people that force you down a particular path. Ties to events and decisions and choices. Everything is intrinsically tied. Memories bound by gossamer thin threads, easily broken… forgotten. Marriage vows, sincerely meant form the strongest bond between two people, difficult to break even in the direst of circumstances. Implications of breaking this bond are far-reaching and have a long term effect on many people, families linked by this tie, children borne into it, property, pets and long held future plans and aspirations. When ties are formed there is no anticipation of breaking them. Bonded in good faith, with good intentions. Would you have formed those bonds knowing what you know now, and knowing who else they would implicitly tie you to? Are you bound to those additional people in the same way? Do your vows and promises apply to them too, simply by virtue of family ties? Can you exist within a family group without honouring those ties? I would venture to say that you can but that it’s not without difficulty. Ties are not of equal strength or value. A shared family name cannot offer enough of a tie sometimes. There is an inherent need for some level of shared values and common interests to allow a relationship to develop which will illicit necessary care and compassion between two people. The guilt of not honouring those ties is sometimes great enough that you behave towards people in a way that you would not necessarily choose, in a way that does not make you happy. It does not make me happy. Choose the people you have in your life. Choose how tightly those bonds are formed. Choose to break those bonds with people who impact negatively upon your life. Choose your story. Choose happy.

I cannot begin to detail my life at the moment. Nor would it make an interesting read on the whole. 2021 was supposed to be better than 2020. So far? Not so… So in the spirit of choosing happy, I will focus my writing on positive aspects of my life. The benefits of this are twofold… one, I am forced to seek out positives in what is presently, a predominantly stressful and challenging existence, which is a healthy attitude to have, and two, it’s far less depressing for others to read! Win-win, I’m sure you’ll agree! It’s so easy to get bogged down with negativity when you are enveloped by difficult and stressful experiences. Being able to identify even the tiniest chunk of positivity is a challenge and a joy and reaps it’s own reward. Thank goodness for rainbows…

Which leads me neatly into one of my personal resolutions for 2021. No more ‘woe is me’ focussing on the things I can no longer do or my perceived limited usefulness. Nope! I am useful. I can do things. I am enough. Parkinson’s does not define me. Unless, of course, I choose that?! What if I choose to be defined in spite of a diagnosis of Parkinson’s? I’ve probably mentioned it before but I’m a member of a Parkinson’s support group for NHS professionals. It’s a fantastic group full of highly skilled and knowledgeable healthcare professionals… and me!! This is a group of highly motivated individuals who are going to great lengths to raise the profile of Parkinson’s within the NHS and also to the wider public. As group we are making a video, highlighting the fact that people with Parkinson’s are working within the NHS and they are doing a great job! The video will be entered into a competition at the World Parkinson’s Congress… eek! Yes, really! So I’m getting impossibly far out of my comfort zone in doing this but it is going to be so good!! I was given a script to read for part of the video. It’s still very much in the development phase… but I love the words and the meaning behind them. Like I say, it’s going to be sooo good! Despite me… in spite of me?! A couple of outtakes of my 1 minute practice recording. I won’t tell you how many attempts I made before I managed the who thing in one go… tragic! Acting is definitely not in my future. Actually, speaking probably isn’t either! Please don’t watch these video clips if bad language offends you…. I will share the final video when it is complete… probably in April… it will be worth the wait.

My mum bought me a fabulous Christmas present. It’s a custom paint by numbers portrait of Obi! I don’t paint… but I will paint… I’m sure it will be amazing when it’s finished. The canvas is huge but the areas to paint are teeny, tiny which does lead me to wonder whether my mother considered the skills and abilities of the recipient of this gift i.e. me!! Me, the person with Parkinson’s, with a tremor that affects my right hand. So painting teeny, tiny areas with my right hand is not going to be easy, is it?! She must’ve given it some thought because she had the foresight to order two sets of paints so that I would have enough to paint over my mistakes… clearly has confidence in my abilities!! I’ll add a photo so the magnitude of this challenge can be appreciated… bring it on! I will do it! So here it is in all of its unpainted glory… help!! I added a 5p coin to the second photo to illustrate just how useful a tremor is going to be when executing a pairing of such minute detail… easy, right?! I will keep you updated on my progress but I suspect this may take some time…

2020 will go down in history as the year of Covid 19, death, self-isolation, hands, space, face, bubbles and 2m distancing, swabs, tiers, lockdown, vaccines, furlough, poverty, cancelled holidays, weddings and landmark birthday celebrations, lost education and missed exams, conspiracy theories, protests, fear, exhaustion, keyworkers, Microsoft teams and zoom meetings, pride, clapping, recognition, Sir Tom Moore, support and being kind. We will remember 2020 for all of the wrong reasons. It’s (understandably!) too easy to become focussed on the worldwide pandemic which devastated so many lives, but 2020 brought us so much more than Coronavirus… honestly!

For me, 2020 gave me perspective. It showed me that no matter what life throws at you, and it’s done it’s absolute worst in recent months, it is possible to see the positive in every single situation and that we’re lucky (I use that word very loosely at the moment!) that things are not worse. For example, when Jules had her stroke back in September, we could have lost her , but she hung on to the tiniest threads of hope so we had to hang on in there and fight our best fight with her, and here she is 3 months later, rehabilitated and ready for discharge from hospital. Jules doesn’t want us feeling sad and sorry for her, she wants us fighting her battles with her and cheering her on from the sidelines. Our lives collectively, changed forever when Jules had her stroke but what matters is how you deal with a crappy situation when you find yourself in it. Our lives will never be the same again, we now have a new normal which none of us would ever have wanted, but we will embrace what we have and make it the best normal we can. Jules having a stroke introduced us to new friends and showed us the very best of the NHS for which I will always be very thankful. Perspective.

2020 also showed me that I am stronger than I know. My Parkinson’s symptoms are now worse than they were before my diagnosis 2 years ago, worse than they were before I started on medication. Medication to treat the Parkinson’s symptoms and yet more medication to treat the side effects of the Parkinson’s medication. In 2 years I have gone from zero meds to 12 essential tablets per day plus a few others I take as required. My ability to function is reliant upon a handful of tiny tablets. And they’re no longer working well enough. A year ago this would have floored me, stopped me in my tracks and overwhelmed my total existence. Now I have so much other shit to deal with, my own health is no longer a priority. I haven’t got time for it to be. I could make time to contact my PD nurse for her to tweak my medication again, but I find this such an ineffective way to manage my condition. And so, instead, I have discovered an inner strength I never knew I possessed. A strength which allows me to prioritise everyone else and still just about function. This strength I found is good at carrying on no matter what but it has limited usefulness and very occasionally the mask slips revealing, the fraught, scared, pained, exhausted person hiding behind it… I’m sorry that happens. I hope the new year brings with it renewed strength because I’m going to need it! Strength.

Another thing 2020 taught me was the importance of family. I can’t tell you how much I have missed spending time with my mum this year. The thought of her on her own, hundreds of miles away, has been unbearable. We have taken to talking every day on the phone, a fragile link all too easily broken by a poor signal in her rural location. Many seconds spent repeating ‘hello?’ to one another when we could have been having a meaningful conversation. If talking about her boiler for the sixth time that week counts as meaningful? I jest but really I’d rather be talking about her boiler than wondering why she hasn’t answered the phone on my third attempt at calling, panic rising in my chest, altering the pitch of my voice when she does finally answer and I’m overcome with relief. That’s the trouble when something becomes routine and for some reason your daily phonecall doesn’t happen causing you to think the worst. When in reality she’s gone for a walk, climbed over a stile, and then found herself unable to climb back over it… I wish I was joking! So yes, I have learned to appreciate my family and cherish the tentative links I am afforded with those relations I am not currently allowed to see, or hug or talk to face to face. My little family unit is bruised and broken and would really benefit from some additional support which we would be given under normal circumstances. Why is it that you have to lose something to appreciate what you’ve lost? Family.

Love. Without love I’d probably be starting 2021 on the brink of divorce. Sometimes life is just too hard. You don’t have enough left in you to invest in your relationship in the way you know you should. But we have the benefit of love. Sometimes we just need to take time to remember the good times because we will have them again, to remember what makes us great together, our little team, stronger together, always. My soulmate, my partner for life. In sickness and in health. We can do this. Together we are greater than the obstacles in our path. Love.

Friendship. 2020 has shown me the value of friendship. The people in your life who know you better than you know yourself, tell you the things you don’t want to hear, pick you up when you’re down, support, love, care in ways that no one else can, make you laugh and share your tears, save you. The contribution that friends make to your emotional wellbeing cannot be underestimated. I am only afloat because of my friends. They support me and keep my head above water, while underneath I’m broken and sinking fast. I would not be me without my friends. My rainbows… Friendship.

Kindness. 2020 was the year of being kind. I have had so much kindness shown to me. When I had my own battle with Rona, the offers of help and support were overwhelming. People are genuinely kind. They do care. If it takes a worldwide pandemic to bring out the best in people, then bloody well done!! I’m not doing New Year’s Resolutions but I do plan to pay back some of the kindness shown to me. Pay it forward with random acts of kindness. Kindness only really works if there is no expectation of something in return, and there shouldn’t be, should there? Be kind.

And finally, because I’m boring myself now, get a dog! Particularly a very hairy, smelly, bouncy dog of little brain! Obi would not be everyone’s canine of choice, I get that, but he’s mine and he absolutely has my heart. I could go on but all I’ll say is, if you have room in your home and your heart, get a dog! I actually have room for another… just saying… dog.

And so we enter 2021, at the height of a pandemic. I think we’re in for another crappy year but this time next year we’ll be able to look back and say, ‘It was bloody awful but we beat it!’. The restrictions are hard, believe me, I know… but if that’s what it takes to get through this in what will actually be a relatively short period of time in our lives, surely we can live with it?! Bring on the vaccine and let’s get this thing under control and regain some semblance of normality. I selfishly need to see my friends. To spend time with them, doing what friends do best, supporting one another, and finding really stupid things to laugh about until we’ve laughed so hard our chests ache. I really miss that… And I miss my mum. Knowing I can’t see her makes it so much harder. So no resolutions. I can’t commit to that when my world has been spun on it’s axis creating a new normal which is hard. But I will get back into blogging more regularly… there is a small chink of light at the end of a long tunnel which should give me back a little bit of time and motivation to start blogging about happier times. Watch this space… Oh and I have made a promise to myself to get something published… I don’t know what or when but it’s a bit of a life goal. Lordy, what am I doing?!

A friend sent me a video clip of Michael J Fox talking about the hardest times in his life since his Parkinson’s diagnosis. Not a very cheery subject to share, you might be forgiven for thinking… however, what you take from that short clip is the amazing way he dealt with those difficult times, how he accepted what had happened and was able to move on from them. My favourite quote from the video is this:

“Part of gratitude is acceptance and accepting that this thing happens. This condition you find yourself with or this situation with your family or this situation with the world or whatever it is you’re fretting about, accept it for what it is. It doesn’t mean you can’t ever change it. It doesn’t mean you have to accept it as a punishment or as a penance, but just as something you can recognise, and put it in its proper place and then see how much of the rest of your life you have to thrive in. Otherwise it’s just this free-floating anxiety that just creeps into every pore of your being. You know if you name something and identify it and accept it, then you can move on.” Michael J Fox.

Michael’s words resonate so much with me at the moment. At a particularly low point in my life, I was told that I overshare. The person who said that to me is of no real significance to me, so why has her comment stayed with me for so long? Maybe she’s right? Maybe I do overshare? She told me that everyone has baggage and stuff going on in their personal lives that they choose not to share, and that I am too vocal about mine. I have thought about that often, particularly recently. Is it better to keep everything about your family and personal life completely private? I don’t think that is either possible, or healthy. I love my family, why wouldn’t I share them and that love for them, and the absolute joy they bring me, with others? Equally, when times are difficult, why wouldn’t I share that too? A problem shared… I do share a lot of stuff. My Parkinson’s journey in person and via this blog. But that is personal to me. It helps me to rationalise what is happening to me and hopefully, deal with it in the best way I can. I know my blog is in the public arena, but the idea behind that remains the same. People relate to the things that I write about (mostly) and can recognise themselves in some of my witterings. While people enjoy reading my blog and occasionally take something from it, I will continue to make it public. I published my battle with Covid 19 for different, but equally valid reasons. Again, if this is over sharing and people don’t want to read it, then don’t! I don’t force anyone to read my posts on social media or here. In person that’s different… tell me to shut up! I need to write. It keeps me focussed on what is important, on what matters. But I don’t write about everything, believe it or not! There are aspects of my life that I don’t share. It doesn’t mean they’re not happening, or that I’ve put them in a box marked ‘private’, never to be talked about. I have so much going on in my life right now that I haven’t shared with anyone, and out of respect for other people involved, I won’t. I’m off work sick at the moment, recuperating from Covid 19 and dealing with new Parkinson’s symptoms which aren’t going away any time soon. But that aside, we are dealing with a family crisis which has impacted our little family so massively, the stress and anxiety wake me in the early hours of the morning, residing in my chest and head as a pounding ball of tension, waiting to release in those brief moments when I’m caught off guard, as ugly sobs which come from nowhere. Oh yes, believe me, we have ‘stuff’ going on which affects my ability to function like a normal person and forces exhausted sleep upon me in the middle of the day, leaving me muddled and shaky and angry for not coping better. I’m not sitting at home watching daytime TV and baking, I’m out doing stuff I never expected to be doing and trying to achieve the impossible… but that’s the nature of a crisis, isn’t it? You do what you have to do because there’s no one else to do it, no matter what else is going on right now. So, I’m trying my best to accept that what has happened has happened and we can’t change that. I’m trying to accept that the things that have happened this year are not because of anything I’ve done and are therefore not a punishment. I’m trying so hard to accept that life now is not as we planned it but the way we deal with it and move forward is our choice. We can choose how easy or difficult we make it. We can choose who to involve and who to leave behind. We can choose our own happiness. And there’s nothing wrong with that. Accept your story and your part in it. Move on from the stuff that makes you unhappy. You can’t change that part of your story because it has already happened but you can choose how you write the next chapter. Learn from the bad stuff, but don’t dwell on it or it will dominate the rest of your story moving forward. I want to be Clare who had a crappy year but despite that is still enjoying life with amazing family and friends and dog(s)?! I will be that Clare… eventually. The process of acceptance is difficult and slow. I’m working on it though.

In other, not so different, news… I had my first face-to-face neurology appointment this year!! I love the fact that I can contact my PD nurses anytime by phone or email and they do everything in their power to help me, but it’s never as good or as useful as seeing someone in person. Waving a dodgy limb under someone’s nose for assessment is much easier than trying to describe symptoms over the phone. Turns out I’m experiencing ‘wearing off’ in the form of dystonia in my right foot and arm. Who knew?! We had a long conversation about the risks versus benefits of increasing the dose of potentially personality-altering drugs and I decided to go for it. I mean, I might get one I like better! I am joking… sort of… I’m also having issues with gut motility, or rather lack of it… so basically, I’m full of shit… it’s no laughing matter really but I can see the funny side. Parkinson’s has slowed down my gut so much that I vomit if I eat. Yay! More importantly, it affects the uptake of my Parkinson’s drugs so I need to get it fixed. See how much you take for granted in life… until it stops working! I’m getting drugs to help with that too. Whoopie do! Hopefully it will account for a couple of stone at least…!!

So the dog woke me up at 4am vomiting. Marvellous. I’m now camped out on the sofa because we don’t have carpet downstairs and it seemed the sensible thing to do with a vomitous hound. That will be the same hound who puked his guts up and is now chasing cats (our cats, not just any old random cats!) round the house at speed, and flinging a manky old chew, he found in the garden, round my living room… I meanwhile, am lying on the sofa, bedecked in my lovely blanket, but still freezing cold until the heating kicks in ready for everyone else getting up, feeling just ever so slightly conned by my ‘poorly’ pup… Mark has text me telling me to go back to bed, but the Law of Sod dictates that as soon as I do, the dog will throw up on our bedroom carpet again… Get a dog they said!

I’m starting to believe that Covid 19 has done her worst.., to me at least. I’m feeling better. That statement applies as a general statement of fact but day to day, the way I feel varies from OK to still pretty shitty. But generally better will do me. After the last month, give me a break! I must be feeling better because I’ve started doing stuff. By ‘stuff’ I mean ordering things online and writing emails.., neither of which ever ends well.

Yesterday I penned a lengthy email to my son’s headteacher, bemoaning all that is wrong in the world and accusing him of not doing enough to support my son’s education amidst a worldwide pandemic. I’m not a crazy person. I fully accept his argument that his hands are tied by the government and the Department of Education. I get that. But my son is in year 11. Through no fault of his own, he has received approximately 2 weeks of face-to-face teaching since he went back to school in September. He has missed all additional interventions designed to help him catch up due to not having been in school since March. Instead he has had work emailed to him on a fairly ad hoc basis. And now he can’t return to school on Monday because a child in his ‘bubble’ has tested positive for Covid 19. I voiced my genuine concern that my son will not be able to ‘catch up’ and will not be able to achieve the grades he is capable of, and deserves, when he sits his exams in the summer. I may have thrown in the Equality Act for good measure… As a teenager with autism in a mainstream school setting, my son already has difficulties accessing an education which a worldwide pandemic has made a million times worse. In fairness to the headteacher, his response to my outburst was both reasonable and measured. So I’ll give him a chance to help me save my kid… watch this space…

When you’ve got a lot of time on your hands but little energy, make that very little energy, you have to fill your time doing something… anything! So I shop online. Grocery shopping online is both boring and disastrous in equal measure.. so I ‘buy’ other stuff. When I say ‘buy’, what I actually mean is that I fill my virtual basket with items I love and then leave the site without actually checking out. It satisfies my compulsion to shop whilst protecting our bank balance… much to Mark’s relief! However, it is Joe’s 17th birthday tomorrow so I’ve had an excuse to actually buy things. He’s not your average 17 year old, but will love the artwork and literary gifts we’ve bought him. I love that unlike his dad and brothers, he is following his artistic and creative passions. Whilst searching for smaller gifts to compensate for the fact that the artwork he chose is still somewhere over the Atlantic, I randomly came across a cardigan I loved. Well, not so much a cardigan, more a knitted coat… a coatigan! The website was in German. Of course it was… I did German. In fact I got a B in my GCSE! How hard could it be to order a cardigan?! Turns out it’s quite hard… I’ve ordered something. And the subsequent emails appear to indicate that my parcel has been shipped. However, I’m a little bit unsure about the sizing… again, watch this space… it’ll probably fit the dog!

Covid 19 has had a massive impact upon our lives. The obvious physical impact on our health. The emotional impact of self-isolation. We are innately social beings and as such we thrive from being in one another’s company. However, sustained and enforced close contact can have equally negative effects. The impact on the economy and healthcare systems has been devastating. I haven’t had a face-to-face appointment with anyone this year. Parkinson’s is hard enough to manage with regular support, without it it’s impossible. And Covid 19 has a devastating effect on Parkinson’s symptoms. I mean, why wouldn’t it?! But I have an appointment in November. They are like gold dust. Two years after diagnosis, my list of questions is long! And there it is… it has literally just dawned on me writing this, that I didn’t acknowledge my diagnosis day. Covid 19 robbed me of that moment. Maybe that’s a good thing?! The last month has been rubbish… and that’s putting it mildly. Onwards and upwards!

The Covid 19 that is portrayed in the media and beaten by presidents and prime ministers the world over, is not the Covid 19 I have experienced. The public face of Covid 19 is the panic-inducing statistical representation of death. It is the scare-mongering, panic-buying, rule-flounting face of a global pandemic. The reality is that people die. The reality is also that people believe they are invincible and they won’t get it, or it’s not that bad… The media portrayal of Covid 19 is a travesty to those who have suffered and those who have died. People will believe what they want to believe, shaped by their upbringing and culture and social status. It doesn’t matter what you believe when you succumb to this virus. Suddenly, you are the same as everyone else, fighting the same battle with the same resources… unless you happen to be a president or a prime minister… then your battle is one you will definitely win, your armoury so much more prepared to fight. The rest of us do what we can…

I have seen another side of Covid 19 which does not feature in the Prime Minister’s briefings or the daily news reports. It is the face of Covid you only get to see if you succumb to the virus. The private face that shies away from the spotlight. It isn’t newsworthy or meme worthy. Why talk about it at all then? This is the virus we should be talking about! Forget statistics and Track and Trace and Tiers 1, 2 and 3. Forget swabs and PPE and self-isolation. Forget bubbles and vaccines and washing your hands. Obviously, DON’T actually forget any of those things…. instead for a moment, consider what else Covid 19 has brought us…

For me, Covid 19 has highlighted the importance of community and friendship and love and kindness and hope. So many people have shown us immeasurable kindness. Offers of help flood in daily. Packages left on the doorstep. Offers of meals and shopping and just a friendly listening ear. Flowers. Messages full of love and support. Video calls which make you smile and forget how rubbish you feel for a moment. Faith in humanity restored completely. Covid 19 brings out the very best in people. Love, compassion, care, friendship, community and a little bit of hope. This is the face we should be showing the media. This is the important story. It’s still there, innate in us all, the desire to help and to care and to hope. When we support one another we can achieve great things.

Covid 19 won’t beat me. Covid 19 doesn’t know I’m vulnerable and my risk of dying is 30% higher than your average man on the street. It doesn’t know that if I succumb to pneumonia, I will struggle to fight it. So we continue to battle one another. My symptoms fluctuate with annoying irregularity as Covid 19 tries to get the upper hand. Covid is cunning. There is no game plan. New and unexpected symptoms thrown in for good measure to try to throw you off guard. You had me there for a moment. I almost gave in. The battle was too great in my weakened state. But then I remembered, my friends, my family, my community, my army. They are backing me and fighting with me every step of the way. How can I even think about giving up?! Bring it on! I have way too much to live for.

When doctors want to give you bad news, they take you into the Relatives Room or Quiet Room. I was in there on Friday receiving devastating news, but somehow they make it OK. Not OK, that sort of news is never OK, but they explain things in such a way that it all makes sense. It’s about as bad as bad can be but at least you understand what has happened and the limitations of what they, as healthcare professionals, can do about it. They reassure you they are doing everything they can and you believe them. If they have even the tiniest bit of hope, then you do too because hope is all you have left. On Friday we hoped she would survive the weekend…

On Monday they took me back into the Relatives Room. A different consultant and this time, a nurse too. Alarm bells started ringing in my head. There was no nurse on Friday for that conversation. Are they expecting me to react badly today?! Imagine sitting in a little room with two people you’ve never met before, having a conversation about the value of a person’s life?! Is this person’s life actually worth saving? Can we predict that they will recover enough and have such a quality of life that they will want to live? It was the hardest conversation I’ve ever had to have. How can you possibly put a value on the life of someone you love?! And how can you even begin to imagine what level of function she would be able to tolerate for the rest of her life?! They paint different pictures, offer different scenarios of possible outcomes, but no one has a crystal ball. No one knows. When people are that poorly, the picture can change in the blink of an eye. And at the end of the day, it was never my decision to make. It was hers. She survived that first weekend when we couldn’t sleep in case the phone rang telling us she was slipping away. Then after that conversation to discuss whether her life has any value now to warrant life-saving interventions, she surprised us all again! If Jules wants to fight this, then so will we… love you Jules xx

It’s been a difficult week, made infinitely more difficult by the very necessary restrictions posed by COVID-19. Only one person can visit the hospital for one hour each day. I totally understand the reasoning behind that, I really do. But imagine being that person? Alone. In a Relative’s Room, being given devastating news. Trying to remember every minute detail of everything that was said, at the same time as managing your emotions. If you go to pieces you’ll be no good to anyone. You are the link between the person fighting for their life and their anxious family waiting for news at home. So you listen intently with gritted teeth behind your mask. Maintaining your composure until the end of the conversation as you try to ask the questions that you think may be asked of you when you relay the information to your husband and mother-in-law. You worry that you haven’t said enough, been a good enough representative for the family. Do you even know what her wishes would be? What if you say the wrong thing? At the end of the day, it doesn’t matter. It is completely out of your hands. So you thank the lovely consultant for his time, knowing they are fighting as much as Jules is, knowing they will make the right decisions anyway. But thankful that they are. You leave the ward alone. Your mind races as you stand in the queue to buy a coffee, frantically trying to remember every detail of the conversation you’ve just had. You take your coffee and sit in the dappled sunshine in the Wellness Garden, grateful for a warm day. You feel the icy tears escaping down your cheeks but you are numb, emotionless. So you wipe them away, take a deep breath and pick up your phone. How do you tell someone you love such terrible news? Do you tell them everything or save them the worst details to spare them a tiny bit of heartache, bearing that burden alone? It’s an impossible situation. They inevitably ask questions you cannot answer and you berate yourself for not knowing… You want to share the burden but you know that really you can’t, so you emphasise the positives in what is the bleakest of situations, and downplay the negatives. You search for things to say that might make an impossible situation a tiny bit bearable. You’re not very good at this and you apologise for everything because that’s all you can do. Why can’t I be better at this stuff?! People are counting on me to have the answers and at least remember what has been said. Things come back to me erratically, and I share these random thoughts as I get them, making it difficult to give some sort of order to the conversation. But telling someone that a loved one may not survive is hard. Telling them that you had a conversation about the value of their life is harder. You can’t afford to get that stuff wrong. The pressure to do the right thing and say the right thing is huge. I’m no good at this…

This post is called Perspective because that’s what we’ve been given. Life is shit sometimes but it’s only when something like this happens that you appreciate how lucky you are. Bizarrely, I’m not feeling lucky… I’m feeling sad, and tired, so very tired. Thank goodness for family and good friends and dogs. And thank you to Prince John for making me smile on what was the bleakest of days x