A scary thing happened yesterday. I worked my normal shift at work, called at the chemist to pick up my many repeats and came home to my usual ‘off’ time where my body shuts down and I can’t function for a little while. I know it’s coming. I get a funny sensation in my head, but I literally can’t do anything about it. Sometimes I crash for a few minutes, sometimes a couple of hours. Usually I can bring myself out of it. Yesterday I couldn’t. I remember getting the ice cream out of the freezer (priorities!) and that’s it. Mark said I was unresponsive and he couldn’t rouse me at all. As I was clearly still breathing, he left me to ‘sleep’ it off. I came round a couple of hours later, asking where my ice cream was (priorities, again!) fuzzy headed and totally unaware that I’d been out cold for a couple of hours and Mark had been trying to wake me. I felt rubbish all night, thick-headed, fuzzy and particularly stiff and slow. This is a known side effect of one of the drugs I need to function with some degree of normality. It’s a delicate balance between benefits and crappy side effects. Up to now I only seem to experience this side effect when I’m already tired or stressed, but the effects are becoming more severe. It happened again today. More annoying because it’s my day off and I’m not particularly stressed and had little more than food shopping and tackling the washing mountain planned. I was ready for it this time and took myself to bed when I felt the telltale warning signs but I lost a couple of hours of my day. Mark couldn’t wake me again. I get a warning at the moment but it still comes on quite suddenly and then you feel rubbish for the rest of the day. The big worry is that it could happen when I’m driving or doing something equally risky…. doesn’t bear thinking about…. so I have to let my HCPs know. I’m reluctant because it will undoubtedly mean more tweaking of my medication which leads to more horrible side effects… who wants that?! Parkinson’s is great… I’m forever grateful for my lovely hubby who accepts those times when I literally cannot function, without complaint, and takes the reigns, keeping the household together and the cogs of life turning. I’m also grateful for my furry sidekick who literally does not leave my side….

The funny thing is, I can’t sleep at night. So I tried listening to some ‘soothing’ sounds to help me sleep last night. It was a selection of ocean, rivers, rain, wind, birdsong type sounds which changed every few minutes. What I hadn’t reckoned on was the bird sounds driving the cats batshit crazy looking for non-existent birds, and one of the ‘nature’ sounds being a hoover?! leading Mark to believe someone had broken in and was hoovering downstairs… because that’s a common theme with burglars…. Mark’s thinking being that it couldn’t possibly be one of our boys… So I switched it off because it wasn’t particularly soothing either. I spent the rest of the night with an elderly cat purring on my head. Sleep is for the weak.

I learned something this week. There are special settings on an iPhone for people with Parkinson’s. Who knew?? My mind is literally blown! From what I’ve seen they look really good and particularly useful for anyone with any sort of tremor or difficulty controlling their movements. However, despite watching the video a couple of times, I clearly lack the technical ability to apply the appropriate settings to my phone. It’s a good job I have kids 😳. Seriously though, there are some very clever people in this world and help is out there if you look hard enough. I know using an iPhone isn’t number one priority for a lot of people with Parkinson’s but I’m all for anything that makes life a little bit easier.

Obi and I have been busy with my Everyday Heroes Challenge to walk 100km in September to raise money for Parkinson’s UK. I know you’re probably thinking 100km in 30 days doesn’t sound like much of a challenge, but for me it’s huge. I get up at 5am to walk him before work. This is before I take my first medication of the day and is reliant on the lasting effects of my slow-release night time medication to get me moving. And actually, this is proving to be a pretty good time of the day for me to walk. Which also shows that the dose of my nighttime medication is pretty much spot on (if you ignore the horrendous side effects…). I also walk him after work, after my shut down when I’m feeling about as rubbish as it’s possible to feel. So I’m pretty proud of the fact that we’re on target to smash 100km in 30 days. Factor in a dog of little brain who has to lick every blade of grass and have a poo every 10m, and I’m impressed that we’ve continued beyond day 1… The amazing sunrises and sunsets are an unexpected motivating factor… I love the sky! I’ll post the link to my fundraiser. If you have couple of quids you would be willing to chuck in our direction, Obi and I would be grateful, but it’s not necessary. This is more about the personal challenge. I keep thinking back to my diagnosis and walk for Parkinson’s when I couldn’t even walk a couple of km without my sticks… now look at me… wandering round Branston in my pyjamas with an industrial strength power torch and a delinquent dog, photographing the sky and screaming at cyclists who ride on the path… I’m not joking, no… 😳🙄😂🤦🏻‍♀️🐶.

https://time-to-get-active-20.everydayhero.com/uk/challenge-clare#

This picture represents me this week. A bit battered and bruised but clinging on for dear life!

I managed to capture this photo of a broken fly clinging to my washing line in the rain. I wanted to show his determination, to cling to that wire and not be beaten by a little bit of rain. And cling on he did! For quite some time. Flying away later despite a seemingly broken wing… I’m reliably informed (by Google) that he is a flesh fly. Probably best we don’t delve too deeply into the reasons flesh flies are called flesh flies… Anyway, I named him Frank. And now you’re assuming I’ve totally lost the plot, naming flies and taking photos of them… you’re probably right to a degree. But this little broken fly is me this week. Not sure quite what it says about someone who identifies with a broken flesh fly called Frank, but I’m going with it… the analogy works!

So you’ve probably guessed that I’ve not had a great week. I haven’t, but it’s not been all bad however, while the highs have been really high, the lows have been really, really low. There have been tears and tantrums and moments of utter despair, countered only by those brief moments of pure and absolute joy! I have wasted many hours reliving and overthinking incidents, injustices and conversations…Why does your brain allow you to do that when you can’t actually change what happened?! It’s exhausting… and pointless. So desperately pointless. And generally only serves to make you more miserable. Crappy things happen, by accident or design.. but they still happen. Analysing every minute detail of an incident or word spoken in the heat of the moment, will not change the outcome, or alter someone’s perspective. Generally it just serves to hyper focus your attention on the negatives. And negative aspects of any given situation are simply that, negative, and by definition will only serve to make you miserable. So don’t do it. Don’t wallow (I’m speaking as an expert wallower!) as it manifests your misery and plummets you into the very depths of the black hole you were previously just teetering on the edge of. It can also fire you up to fight back and battle harder, when really what you should be doing is accepting your failings and apologising for any wrongdoing so the past can become precisely that, the past. Reflection and acknowledgment is important, wallowing is not! Reflect, learn from it and put it behind you.

I haven’t managed to do that this week. Overthinking every little injustice has led to the belief that I am now public enemy number one, much maligned by all who have the misfortune to know me. I am indeed a terrible person. There is no other possible explanation for the way this week has played out. You reap what you sow. I also now imagine that everyone who knows me has received some sort of secret memo outlining my failings and inadequacies and encouraging people to treat me as the pathetic specimen I really am. Of course, I don’t really believe that, but when you are feeling low, for whatever reason, it is so easy for negativity to spiral out of control, and for you to convince yourself that these ridiculous notions are in fact true. There has to be some truth to lead you to these conclusions in the first place, right? Imagine someone suddenly changes their behaviour towards you with no explanation… When you try to establish a reason for the change, their response is not to address any issues or concerns you may be having, but to instead identify you as the problem. Deep down, you know that’s not the case… but you cannot rationalise what they are telling you and the way they are behaving, any other way, so your brain fills in the gaps to eliminate any confusion. They’re right! I am a terrible person after all. So now, after trying to be good and helpful and supportive and kind, and that clearly not being the perception of others, I have decided there is no point any more. I cannot be what others want me to be. My intentions have been twisted. My own words used against me. I am done. Beaten. I am not enough. And by the standards set for me, I never will be. I don’t know what I can do differently to be the person people want me to be, or expect me to be. It’s time to move on. I’m closing the net. Eliminating all of the people and things that do not have a positive influence in my life. So for now you have won. Bravo. You have succeeded in tipping me over the edge this week. Unlike Frank, I couldn’t cling on to the wire.

I shouldn’t have to write this paragraph in my own blog, my own safe space, but sadly after recent events I have to spell it out. This post is not about a single individual. My comments relate to the actions and words of more than one person. So if you identify with anything I have written here, it doesn’t automatically mean I am referring to you, but if anything, perhaps you should be giving your head a wobble too?

I’m going to end on a positive! The highlight of my week… Joe’s GCSE results!! Go Joe! You are truly awesome. The brains of the family indeed. His results are so similar to his mocks that there is no denying that he would be capable of achieving the same grades had he actually sat the exams. I’m glad his teachers recognised that. So the skinny legend is heading to Sixth Form to do A levels in Art, English Literature and Biology.

On Friday night I slept for 14 hours solid. Anyone who knows me, also knows that is nothing short of miraculous! I don’t sleep. A combination of Parkinson’s-induced insomnia and dyskinesia, and the side effects of the drugs designed to combat these symptoms, results in very little good quality sleep. So you’d think 14 hours of being literally unconscious would be hugely beneficial to someone like me?! Not so! It was as though someone had switched me off. I couldn’t wake up if I wanted to. So I didn’t take any of my night time medication. And the following morning I was in a deficit before I started. I often wonder how I would feel if I just didn’t take my medication. The stuff of life. The stuff that keeps me functioning with some semblance of normality. If missing one dose of two drugs is anything to go by, pretty shitty! I felt as though I was in a fog all day, no energy, nauseous and dizzy, very wobbly and unable to think straight. And after all those hours of sleep, I was still exhausted… how can that even be possible?! I’ve read that people with Parkinson’s are struggling with the effects of the current heatwave, and also the impact of COVID-19 and the subsequent lockdown and changes to normality it brought with it. It makes sense when you think about it. PWPs are already so susceptible to fatigue and anxiety and depression. Throw in a worldwide pandemic and the hottest temperatures we’ve seen this year, and people are going to struggle. I am going to struggle. The lack of face to face contact with the usual support services normally routinely available to us is having a hugely negative impact. I am grateful for continued telephone contact with my specialist HCPs but it’s really not the same. It is very much the poor relation of what we had before, of what I am used to and have grown to rely on. The consequence being an uncertainty and insecurity about the future and how normal services can ever resume? It is having a detrimental effect on both my physical and mental wellbeing. Despite the amazing support I have in place from friends and family, colleagues and professionals. Despite all of that…

My professional Parkinson’s group shared a recent study about Parkinson’s and employment. This study revealed that on average, people with Parkinson’s are forced to stop working 4.22 years after diagnosis. I felt sick when I read it. So I have an average of 2 more years at work. I don’t think so! I can’t stop working in 2 years. And that’s an average so I could have many, many more years of employment ahead of me… surely?! My neurologist told me that most people get ‘10 good years’ following diagnosis, so I’m counting on at least that! I have two more kids to put through uni so 2 more years is not an option. Sam will only be halfway through his A levels in 2 years… So after reading the nausea-inducing introduction, I carried on and read the detail of the study. The important bit. Most people who gave up work, did so because they were not supported to remain in employment with reasonable adjustments or redeployment to a more suitable role. I felt a bit better. Reasonable adjustments have already been made for me to remain in my current role, so I feel confident that this will continue to be the case, as and when my needs change. Phew! All is not lost…. However, this, combined with having time on my hands afforded by a week’s annual leave, has led to me re-evaluating what is important. Is my job the be all and end all? It’s pretty important to me for all sorts of reasons but I know I have to look at the future. I can no longer live one day at a time, as much as I’d like to! I have to consider that my job will continue to get harder for me, and not just physically. I need to consider whether my current role will be right for me, and consequently, my colleagues, long term. I have to consider whether continuing to work in my current role will actually be detrimental to my health and wellbeing. So much to consider. And what if I don’t make the right decision, for me, for my family, for my colleagues?! I wish I could go back to living day to day… Parkinson’s robs you of that privilege… and many others. So I’m taking this opportunity, this moment in time, to look at my life in it’s entirety and try to figure out what the most important things are, in view of the inevitable changes ahead. Do I plod on and hope for the best? Or do I make changes now with a view to meeting my future needs? I have a lot of thinking to do… Fortunately, I had a review with Occupational Health last week, and in their view, I’m still fit to work in my current role. That’s good. And helps me to rationalise what changes, if any, I need to make. A change is as good as a rest, or is it? I’m proud of the fact that I am still able to work in some capacity. I am proud of the fact that I haven’t had a single day off sick since my diagnosis almost 2 years ago. I won’t go down without a fight!

My symptoms are worsening. My medication is being tweaked to address the changes I’m experiencing. Every time something is tweaked, I experience horrific side effects. Side effects which require additional medication to combat the symptoms they give rise to. It’s grim. And depressing. And exhausting. But it’s a temporary blip. And fairly minor in the grand scheme of things. I spent an hour today organising my medication for a month – rock and roll!! The photo below is pretty much a month’s medication. For me this is the stuff of life. I literally cannot function without it. Scary to think how much I rely on this concoction of pills in their exacting regimen. Scary to imagine what I’d be without them! Of course I’d rather not be reliant on drugs for every aspect of my health and wellbeing, but there’s no going back now. Still holding out for that miracle though….

I wasn’t going to write my blog any more. I had decided to call it a day and let it disappear into cyberspace. Or make it totally private. It is not having its intended purpose any more. People are accessing it and reading it for all the wrong reasons and that saddens me. But it’s human nature I suppose. It is my personal outlet. My way of rationalising my life experience. My personal thoughts and feelings at any given time. I don’t share those opinions, thoughts and feelings with anyone else. I own them. I don’t write them down for other people to infer their own meaning and interpretation of what I have written, although that inevitably happens. I wish though, that when people do make assumptions about what I write, they share them with me before they share them with the world and his wife who believe the inferences rather than the truth. That’s just life I suppose. So I will continue to write, because it helps me immeasurably to do so. That, right there. I won’t go out of my way to share my blog, although it will remain in the public arena for now. I will however restrict my musings to life with Parkinson’s and a delinquent dog, so those of you who are here looking for anything else will be disappointed, I’m afraid. Moving forward, the focus will be on the positive, happier side of life. I just needed this space to offload today. My space. My musings. My life.

So there I was prepping the veg for our evening meal, when the carrots got me thinking… I know what you’re thinking, how defective is her brain if she’s blogging about carrots now?? I’m right, aren’t I?! Stick with it for a moment, there is a point… honestly! The photo below is of two carrots – did that really need explaining?!

The carrot on the right is a run of the mill, bog standard supermarket carrot. The carrot on the left is a so-called wonky carrot which is apparently less appealing and therefore requires special marketing. Since when did carrots have to be perfectly straight with no lumps or bumps? The carrot on the left is the carrot of my childhood, grown in allotments by my dad and grandad, and enjoyed by us all. The funnier the shape, the more we liked it! The carrot on the right is the carrot apparently demanded by British consumers… I’m not sure how and when that happened, but what are we teaching our kids?? If you’re a little bit lumpy and bumpy and different, you’re not good enough, not acceptable? The point is when both of those carrots are peeled, chopped, cooked and then placed on your plate, you would not be able to tell me which pieces of carrot came from the wonky carrot. The pieces look and taste the same. So why the apparent obsession with perfection, when, when it comes down to it, what is on the inside is exactly the same?! I am the carrot on the left. I will forever be the carrot on the left. That doesn’t make me any less of a person…

Have you ever done something nice for someone? Something that required a lot of thought and effort on your part? Something you felt someone else would be much better placed organising, but they were showing no interest in getting involved, so you carry on regardless because you want to do something nice for someone and you know they’ll love it?! And then at the last moment the other person swoops in, accepting the thanks and effectively taking all the glory. Publicly accepting the gratitude of the person concerned so if you say anything it makes you look ridiculously bitter and twisted. You don’t say anything because you are the bigger person and the person concerned was delighted and you don’t want to spoil that. But it eats away at you and you feel bitter. Why do people do that? Why do some people have absolutely no shame? No conscience? Lesson learnt! I won’t be doing it again.

I’m feeling really, really rubbish at the moment. Really rubbish. A combination of crappy symptoms, new drugs and side effects of new drugs. My right leg has a life of its own now and has moments of involuntary dancing which drives me insane! I’m experiencing extreme nausea and dizziness which plagues me randomly and repeatedly throughout the day. But bizarrely doesn’t prevent me from eating?! I keep doing the neurology tests that I’m put through at every appointment to check how bad my symptoms are getting. It’s verging on obsessive behaviour but is convincing me that I am still under medicated. On the positive side of this, I no longer moan and cry when I feel rubbish. I have accepted that Parkinson’s sucks and I’m actually OK, not great, but definitely OK! How unfair would it be to my colleagues, friends and family if I carried on bemoaning my misfortune every time I feel a bit crappy? Nothing brings people down faster than the misery of others. I need to find ways to cope with stressful situations because I am becoming all-consumed by them and that makes my symptoms worse… but I will. I have to. The Parkinson’s group for NHS HCPs has actually turned out to be really helpful on this front. Look for the rainbows. Do things that make you happy. Accept help when it is offered. Just a wonky carrot…

I have had lots of reasons to smile recently too. Obi’s first birthday. A visit to my mum’s support bubble in Northumberland, which included Obi’s first trip to the seaside and a socially isolated breakfast picnic on the beach. And a Pudding Party! Everyone should have a Pudding Party at least once in their life! Good company, lots of laughs a puppy and pudding… what’s not to love?! We laughed about bras and duvets and Jenny (who is Jenny??) and Chris (no idea who Chris is!) and never having made trifle before… all of which were mundane and boring and utterly unfunny but we laughed and laughed and found ourselves totally hilarious until the wee small hours. The best time with my most favourite people. Bring on glamping and hot tubs and trips to Madge’s B&B so she can make us bacon sandwiches! Life is what you make it and my life is wonky carrots and pudding and laughter… life is good ❤️

It bothers me that people I know are struggling and I can’t do anything to help them. It bothers me that people I know are worried about simply getting through the day and I can’t do anything to make that process easier for them. It bothers me that people I know are often reduced to tears by situations beyond their control and I can’t help them to regain some control. It bothers me that people I know are so consumed by anxiety they cannot sleep and I cannot bring them peace. It bothers me that people I know feel isolated and lonely when they should feel included and valued. It bothers me when people I know feel let down by the very people who should be supporting them. It bothers me that the basic human rights we all take for granted are beyond the reach of some people I know and I can’t wave a magic wand and make that right. It bothers me that basic human kindness is an attribute not afforded to every human being and their determination to exert their will is what is inherently wrong with the world today. It bothers me that I am not enough of a person to elicit any sort of meaningful change because it’s not what you know, it’s who you know and I don’t know the right people. It bothers me that the very people who should be bothered, aren’t… I am bothered…

I was told by a colleague that I’m not worthy of praise… not in so many words but that’s what they meant. We were talking about some lovely feedback from parents and the implication was that I would never get any. I don’t go to work for praise or reward. Don’t get me wrong, it’s lovely to receive it but what sort of person would I be if I relied on that as a measure of my own self-worth? The fact that someone had determined my value as an employee based on the amount of praise I do or do not receive, speaks volumes about their own insecurities and self-worth. In the not too distant past, such a comment would have broken me. Now, not so much. I’m in a good place. I’m reasonably happy in my skin. I have accepted my lot… mostly. I don’t go to work with the intention of doing a bad job or causing distress or harm. I go to work with the intention of doing my best within my accepted limitations. I love my job. I love the small contribution I am able to make. Comparing myself to others or judging my performance based on their values holds no benefit to me. If you feel the need to judge me, then do so fairly, judge me based on the daily challenges I face, not your self-imposed superiority. Take the praise and rewards that are heaped on you. It doesn’t necessarily make you the better person… does it?!

I have joined a group for people with Parkinson’s who work for the NHS. I must admit, I feel like a bit of an interloper in the group. They are all doctors and managers and paramedics and proper healthcare professionals… while I’m just a midwife with a crap sense of humour. They don’t know what to make of me yet so I’m trying to play it cool… Anyone who knows me can probably imagine what that looks like. So far we’ve done video intros and while they talked about their jobs and Parkinson’s, I talked about my dog and my inability to parent teenage boys… I think they think I’m some nut job who just wandered in off the street… I’m learning a lot though so I plan to stick around, whether they like it or not! I may have to monitor my interaction and limit the comments that I find hilarious but no one else does. We discuss a different topic each week… this week it’s pensions and medical retirement. I’m not sure my contribution of, ‘well I’ve got a pension!’, was particularly well received…. Ah well, they will learn to love me… The spooky thing is, out of 10 HCPs with Parkinson’s, four are called Clare, although some don’t spell it correctly… what are the chances?!

Today I discovered I’ve been under medicated… for quite some time it would seem. It was something that I hoped was true ( mainly because I’ve been feeling so rubbish lately) but equally I’d hoped it wasn’t true, because then I’d have to acknowledge that things are getting worse not better (hence the need for more medication). It’s one of those lose-lose situations. Neither option is one you would choose or hope for. But it is what it is, and adding more medication should help and that’s a good thing! I wonder where I would be sometimes without the support of my Parkinson’s team?! Prior to Covid-19 and the unusual circumstances which have resulted from a worldwide pandemic, I have not been able to have the regular face-to-face appointments I have been used to having with various Parkinson’s specialists since my diagnosis, sometimes two a week… So you can imagine how isolating it must be for people who aren’t as fortunate as me and able to continue to work. Work has made a huge difference to my mental health during the lockdown – it has given me something else to focus on other than me, and symptoms and what I can and can’t do. When you have too much time on your hands it is easy to become obsessed with negativity. I am lucky to have remained in regular contact with my Parkinson’s nurse, despite her being redeployed she has continued address my concerns, arrange prescriptions of new drugs, counsel me when I’m having a wobble, call me just to check I’m ok… I love that. She’s a truly wonderful person who respects me and listens to me and knows exactly what to say. I always come off the phone feeling better after speaking to her. I also receive general well-being checks from other members of the team. Last week I was at work when they rang, so they had a lengthy chat with Mark, stating that it’s good for them to get an insight from the spouse of the person with Parkinson’s… Judging by what Mark told me he’d said, and the envelope of information leaflets that came in the post today, they now believe I’m a bowel-obsessed, immobile, insomniac… yeah, that! I am pretty bowel-obsessed if I’m honest… Parkinson’s can cause chronic constipation. Lovely subject. And because it can, it does, for me at least. It makes you miserable. It is painful. And it’s embarrassing. I have it so bad at the moment that on particularly bad days I vomit back everything I eat. It prevents me absorbing medication that is designed to be absorbed in the gut so my symptoms get worse or are simply, poorly controlled. So I no longer eat at work , other than the odd chocolate or biscuit… because the speculation that would ensue is something I can live without. How good or bad my day will be tends to be dictated by how well my bowels are functioning at any given time… sad or what?! My other main issue is morning stiffness and rigidity. I literally cannot walk when I wake up. Mark calls it my ‘early morning shuffle’. You will your legs to move but they just won’t. Eventually, after a lot of persuasion and shuffling about and medication, they wake up and decide to start working again. It adds a lot of extra time on to my morning routine and frustrates me beyond belief! So this morning I had a telephone physio session. I’m more of a hands-on, face-to-face kind of gal… Fiona, my specialist physio, knows me well now. She knows how much I lack motivation for any sort of exercise so the exercises she’s given me can be done lying in bed… she does know me… She’s threatening a technology call next time so she can see what I’m doing… better get those toes wiggling because it’s amazing how she knows when I haven’t done it! Otherwise, I think I’m good?! Lockdown commands necessary restrictions to our daily routines. I go to work. I walk the dog. I shop for food once a week. And now I paint rocks. A new-found hobby which I find relaxing and restorative and fills many a happy hour as I decorate stones to fill a small patch of our front garden. Pointless? Maybe… But I enjoy it and that’s enough for me.

I have every reason to be hugely grateful to the NHS for the ongoing support I have received when I know that services as a whole are stretched and under enormous amounts of pressure as we learn to cope with the additional challenges posed by Covid-19. The NHS has received a lot of negative press recently and support for key workers is waning as the general public becomes complacent, flouting government guidance designed to keep us all safe. Public shaming is becoming commonplace. Everyone has an opinion. Everyone thinks they know best. They have forgotten what is important here. They have forgotten how to be kind. No one goes to work to do a bad job or to hurt someone. We’re all doing our best under exceptionally difficult circumstances. Social media has a lot to answer for. Clap. Don’t clap. Follow the guidance… or don’t. Your decisions, your actions, your choices become the threads of your own story. I hope you can look back and be proud of the story you wrote…

I have to end with an Obi clip…. just because. Tonight’s walk entitled Black Socks. Stick with it…

That mud is like some sort of toxic waste… it stinks!! I’ve washed his feet with deodorising dog shampoo, used strong smelling dog wipes and doggy perfume and I can still smell it!! Thank god it was only on his feet!

I love my dog. Just getting that out there before I begin, because what follows may lead you to believe that I don’t love my dog, when in fact, nothing could be further from the truth. I am using my Annual Leave to address the fact that we have let Obi’s training slide a little bit. OK a lot, like avalanche proportions. I’m not proud of that fact but Coronavirus has a lot to answer for! No training classes + being at home 24/7 with all of your favourite people = spoilt, lazy dog… And being a dog of little brain, regular training is vital. I was becoming increasingly aware that when I take Obi for his daily walk, he was becoming more wayward (ferret incident aside!) and less responsive. So I did some online research and decided squeezy cheese was the answer to all of my prayers. What follows is the exact reason you should not believe everything you read on the internet…

Squeezy cheese is supposed to be a high value reward for most dogs. I was relying on this fact, massively. Having bought squeezy cheese, I even had the foresight to test it’s value at home. He loved it, and sat staring longingly at the fridge, long after I’d put it away. Elated and fuelled by that limited initial success, I stupidly decided to walk him earlier in the day than I normally would, reassured that he would obey my every command at the mere sight of the tube of cheese. What actually happened was that my dog developed sudden onset deafness and blindness. A worrying condition which was miraculously self-resolving whenever he damn pleased…

I walk Obi around the golf course, sticking to the rough areas on the absolute perimeter, but altering our route according to idiots, other dog walkers, random groups of teenagers, drug dealers, swans, geese, heron, weird men and cyclists. On this particular day, it was cloudy but warm. The risk of rain was great enough that I chose to wear my raincoat, giving me essential pockets for poo bags, phone and squeezy cheese. Obi wears a special ‘no pull’ harness. This harness is a nightmare to get on him but gives me the additional reassurance that he’s not going to pull me off my feet on my wobblier days. What the harness actually does is make my dog look disabled as he hops and skips to try to overcome the ‘no pull’ features, and eventually resorts to walking like he only has three legs… but he doesn’t pull!! So off we went to the golf course, a short walk away, recently made longer by the closure of the lane thanks to drug dealing on the Cricket Club car park. This slight extension to our walk now takes us through a housing estate and the site of the aforementioned ferret incident. By the time we reached the golf course, I realised my raincoat was surplus to requirements as I was beginning to sweat profusely in the totally non-breathable fabric. After we passed the family playing cricket on a nearby green, I decided the coast was clear enough to let the hound off the lead. He bounded off into the distance, tongue and ears flapping, eyes full of glee. Obi 2 shits has recently graduated to Obi 3-4 shits, which results in me having to carry several bags of dog poo every time we go for a walk. Juggling these with a dog lead, my phone and now a tube of squeezy cheese is no mean feat for anyone, let alone someone of limited mobility… I was determined to prove to Mark that my hours of internet research should have an instant effect on our brainless canine, so juggling bags of excrement and dog lead, I reached into my pocket for my phone and set it to video mode, all the while scanning the horizon for my dog and unsuspecting members of the public. Then I had to juggle the cheese, waving the tube at my oblivious hound, and then squeezing a small amount onto my finger. I called my dog…. the resultant video is long but it’s worth sticking with it right to the bitter end… I think you’ll agree, a resounding success… I mean, I was flustered, sweating, defeated and had a phone covered in cheese by the end of it… bloody brilliant!

Determined not to be beaten by a mere hound who apparently doesn’t even know his own name any more, I dedicated most of yesterday to retraining him with his absolute favourite treats, rewarding him for every little thing… breathing, smiling, farting…. it was excessive and ridiculous but this was the result on our subsequent walk…

I suspect the warm glow of this one-off success will quickly be dampened by the subsequent return of stubbornness and an innate inability to respond to even the simplest of commands… but I’ll enjoy it while I can!

After a difficult week last week, for many different reasons, my week of annual leave will be devoted to self-care, introduction of new medication and inevitable side effects, gardening, sunshine, cider, dog training and celebrating Sam’s birthday! In the interests of self-care, the weekly video call I have with some of the most special people in my life, has to be up there as one of the highlights. Listening to Karen repeatedly tapping the screen of her phone after she had paused the chat, unable to restore it, still has me chuckling. Thank god for you guys!

Happy International day of the Midwife xx

I’m proper poorly today. I feel like I’ve been hit by a bus. Weak and wobbly, headachy and nauseous. Extreme fatigue is rendering me useless after even the slightest exertion. So I’m malingering in bed with my blanket and lemonade and the TV remote, watching The Chateau and wishing I was there… The dog is my bedmate and constant companion, a part of him always in contact with a part of me… until a naive moggy strolls past the open doorway and he can’t resist his natural instinct to chase… he bounds back up the stairs, bouncy and joyful, having achieved his goal… until the stupid feline creeps back up the stairs and the chase is on again. It’s like Groundhog Day, both as stupid as the other… Coincidentally, my Parkinson’s nurse, Suzanne, rang me today. She’s so lovely. Her role in my story is so important and so very much appreciated. I was grateful for the opportunity to reflect upon my current malaise. We decided to err on the side of stress and fatigue making me feel rubbish, rather than an actual decline in my Parkinson’s symptoms or anything else. I have to remember I’m not invincible and Parkinson’s impacts your body and your life in so many ways. I know I need a break… I’m back in the cycle of work, eat and fall asleep and have lost the living element of my life again. Thank goodness for annual leave next week… I should have been spending next week in Northumberland with the hound and my mum. Covid 19 has scuppered those plans well and truly… but a week off work will be welcome simply for the restorative benefits not being at work will proffer. Mark has just presented me with a bowlful of orzo… a Nigella recipe, usually a favourite… but today I eye it with the same disdain and mistrust as a toddler might regard a plateful of vegetables. Kill or cure…

Reflection is a process of learning through everyday experiences and forms an integral part of undergraduate and post-graduate higher education midwifery programmes. Students are encouraged to use a structured model of reflection to demonstrate their ability to reflect on their experiences during clinical practice. This method of learning from practice has permeated both my working and now my everyday life. In fact this blog is exactly that, a reflection on my life. The ability to look at past situations and learn from them is important. The events and situations, good and bad, which stick out in your memory, tend to be the ones you have learned something from or which have influenced your life in some way. You can choose how you respond in any given situation. You can reflect on your response and decide whether you would respond differently if a similar situation arose again in future. Our ability to reflect and to learn and to change our behaviour (or not!) shapes the person you are, the personality and character you present to the rest of the world. Some people are never taught this skill, their thinking is rigid and their life follows a similar pattern to that of their parents and probably also many previous generations. Some people do reflect but don’t learn from it or make any attempt to change their behaviour or thinking… I mean, why should they?! I reflect on everything, analysing everything, more so the negative and probably not enough recognition of the positive things which have happened. I’m hypercritical of myself. But reflecting on my life has helped me to rationalise the difficult and challenging moments. It has helped me to realise that my life is my choice, my response to situations is my choice, the version of me I present to others is my choice. Sometimes I regret the choices I make, other times, I hope people can see that they are getting the best version of me in difficult circumstances…

Today I reflected on the fact that I cried when the woman from the GP surgery was rude to me on the phone, and unapologetic as she declared they would not be prescribing the medication my specialists have requested and I so desperately need to allow me to function somewhat normally. Would I respond in the same way again?? Probably! I had reached the end of my rope and she was being just about as rude and unhelpful as it is possible to be! Did crying help?? Well no, it didn’t… in fact I just felt more miserable! Next time I will choose an emotionally stronger moment in time to make the call and I will not allow her to reduce me to tears. She was doing her job, badly. Her job is stressful, granted, but that doesn’t give her the right to speak to people the way she spoke to me. I hadn’t done anything wrong. I could complain but that would simply ‘mark my card’ and portray me as a type of person that I’m really not. So instead I choose to be the bigger person, I choose to respond differently next time. I have enough people supporting me. That woman is just a bump in the road, an insignificant blip… I’m getting different medication now, one that they will prescribe for me. Thanks a lot…

Thank goodness for kids eh?! For Tom who asked me to cut his hair and then moaned as I ripped his hair out in clumps with some very old, and apparently blunt, hair clippers. He looks like he has some sort of incurable disease and has taken to wearing a hat… ingrate. For Joe who is practicing his art by only drawing naked women… he walks the dog for me every day, at great expense to my sanity! For Sam who has asked for an end to Coronavirus for his birthday next week… not sure I can stretch to that kid!

Covid 19 has brought out the absolute best in some people. Take Captain Tom Moore for example. He has raised over £14 million for the NHS to date, by walking 100 laps of his garden for his 100th birthday. He is an inspiration to us all and I am humbled by his amazing achievement. He is ‘doing his bit’ despite his age, and frailty, and being in self isolation. He is not moaning and complaining about the restrictions, he is giving something back in any way he can, and what a brilliant thing he has done.

Then there are those people who are working directly with patients who have tested positive for Covid 19. They risk their own lives every time they go to work. PPE may be inadequate for the job they are doing. They may have the correct PPE, but wearing it for many hours at a time leaves them bruised and scarred, exhausted and dehydrated. Claustrophobia from continuous wearing of masks and visors, anxiety and fear of the unknown. They go home to their families knowing they are placing them all at increased risk of infection, despite the stringent infection control measures they strictly adhere to. Or they move out of their family home into caravans or shared temporary accommodation to eliminate the risk of them inadvertently taking the infection home, but leaving them without the support of close family which is vital at times like this. But these are not the people you hear moaning and complaining. These are the true heroes who have given everything to fight this virus, to care for complete strangers with every fibre of their being. I salute you too.

And then there is another group of people we all owe a debt of gratitude to. All keyworkers. All those people who continue to go to work everyday and do a job so the country doesn’t completely grind to a halt. People working in hospitals, pharmacies, supermarkets, schools, bus drivers, bin men, postmen, policemen, firemen and paramedics, carers working both in care homes and in the community… the list goes on and I’m sure to have offended someone by not including everyone, but it’s not exclusive! You know who you are. Without you all, the people on the frontline would not be able to do their job, and the people at home would not be able to stay at home with the relative comfort and ease they are currently afforded. All of those people who carry on, uncomplaining, just doing their jobs. I thank you! You could say no. You could decide the risk is too great, but you don’t and we should all be grateful for that.

The final group of people who deserve some recognition are those who are staying at home and doing the right thing, following the guidance to only go out when absolutely essential and doing everything in their power to stay safe, protect themselves and consequently save lives. It sounds dramatic but it’s simple really. I applaud those people who can, hand on heart, say they are staying at home.

It saddens me that, equal to every single person who is doing their utmost to get us through this global pandemic, is another person who is determined to flout the guidelines, ignore the advice, belittle the hard work and commitment of others and bemoan the restrictions which have necessarily been put in place. I don’t understand why Covid 19 has brought out the worst in some people, but it definitely has!

There will always be people who will believe they are invincible… until something happens to them… and then they will expect the same level of care and attention as the person who followed the guidance and did everything they could to stay safe. It’s the sense of expectation which really galls me… The people who, for whatever reason, believe the rules don’t apply to them. The people who refuse to follow guidance simply because it’s their right to refuse. The stupid people.

There are also people who don’t have a good word to say for keyworkers. I’m sick of hearing that I chose to do my job so I should just get on with it. Im sick of people bemoaning the expressions of gratitude keyworkers have received. We don’t ask for any of it!!!! I’m sick of the distinction between different professions and who is most at risk and therefore a true hero. Does it matter if we’re all doing our best in the most difficult of circumstances? I’m sick of people abusing the benefits put in place to make keyworkers lives that little bit easier. Their greed is at the detriment of other people. We’re all in this together, why can’t we just show a bit of fairness and kindness to one another?? I’m sick of the accusations and conspiracy theories. In the grand scheme of things, does it really matter?? Just do as you are bloody told!!! The people who have it easiest are making life so much more difficult for the people who are necessarily risking their lives every day, working on the frontline. As we enter a further 3 weeks of lockdown, I worry that people have already become complacent. I want to survive this. My story doesn’t end here…