I had to face some truths when I started going to rehab… some embarrassing truths… things you don’t talk about… private things that remain private until you are forced to acknowledge them and admit to them and face them. At 46 I didn’t expect to have to tell a complete stranger that I can’t get up off the floor, or out of the bath, or that I use my children to find things lurking under the bed or in low cupboards. I actively avoid getting on the floor for any reason. Fiona is no longer a complete stranger… she is a specialist PD physio, a miracle worker, a confidante and one of my most steadfast motivators. She has no emotional tie to me so she is able to tell me how it is in a blunt fashion, designed to encourage me to want to help myself… and it works! Fiona asked me what I wanted to be able to do, and as pathetic as I know it sounds to the general population, I wanted to be able to get up off the floor without the aid of mechanical hoists or a team of hunky firemen…. That was my reality. It isn’t any more! Fiona taught me to get up off the floor using any handy piece of furniture for support. My right side is significantly weaker than my left so I have to rely on my left for all of the force necessary to push my not inconsiderable weight up off the floor. It took a lot of persuasion on Fiona’s part, and a lot of cursing on mine, for me to even get down on the floor… the panic which overwhelmed me as I argued with myself as to whether I would ever need to actually do this in reality, was akin to the panic which rapidly rises when you can’t find your child. It’s terrifying… but in this instance I could rationalise that I was being ridiculous. If I couldn’t heave myself into an upright position, there was plenty of equipment in a specialist rehab centre that could. What on earth was I so worried about?? So I flopped onto the floor with all the grace of a winded sloth, Fiona instructing me to get into more disabling positions. I get it. Obviously when you have a fall, because I will, you don’t land conveniently positioned to simply rise elegantly to your feet. No, you land flat on your face with your legs splayed in an ungainly fashion and your glasses lying just out of your reach because they flew off when your head hit the floor with a sickening thud because you forgot to put your wobbly arms out in a vain attempt to save yourself! That’s exactly how you’d find me. Well, how you’d find me before I learned to get up off the floor. Fiona had kindly positioned a chair within my reach. Before I realised what was happening I was standing beside the chair. My execution of the required movements was neither elegant nor graceful but I’d done it!! Fiona was smug. She instructed me to repeat the exercise again and again, up and down, up and down, committing the movements to memory so that I could recreate the exercise at home. Fiona hinted at the suggestion that I would be able to get up without the aid of furniture for support but I emitted an embarrassingly hysterical high pitched laugh and a quiet, ‘no way!’ at the mere thought…

So I’ve been practising… a lot. I surprise myself by achieving this feat with relative ease now. I no longer emit a grunt worthy of an Olympic weightlifter. I mean, it’s not pretty but I can do it. Fiona thinks self-confidence and motivation are my biggest challenges. Fiona’s right! I’ve been doing my physio as prescribed. I’ve found a song I can move to and can be heard yelling at Alexa at all hours of the day and night as she chooses the wrong track for the umpteenth time and I get Alexa rage because obviously she’s doing it deliberately. I’m managing to do my physio twice a day, every day, but three times is a stretch too far, particularly on days that I work. In my mind I’m an athlete… in reality, well… But I’m doing it! So as far as motivation goes, I’m killing it!

In a moment of madness, (ok, another moment of madness, it’s unlikely to be a singular occurrence) I decided to try to get up off the floor without the aid of my trusty chair. I weighed up the pros and cons and decided I could crawl on my arthritic knees to the nearest chair if it all went badly wrong. Plus my children were in the house and could be counted on to come to my aid, after they had finished laughing and taking photos, should I need them to. I’m not stupid, I watched a YouTube video several times before executing the manoeuvre myself. The annoying American guy with odd socks infuriated me enough that after the third viewing I had a point to prove. I gingerly lowered myself to the floor wondering whether my wobbly right leg would provide enough support for me to be able to reproduce what the geeky American had demonstrated so effortlessly? By now I was on the floor. I had to get back up. Do or do not, there is no try! Thanks Yoda… so I did it! I bloody did it! I even shocked myself. So much so that I immediately did it again, just to be sure. I can get up off the floor. Such a simple thing that the majority of people take for granted, but for me it is massive, life-changing… literally!! I can’t wait for my next session with Fiona so I can throw myself dramatically to the floor and then effortlessly leap to my feet. Well, not quite… there will be a lot of effort… and probably some grunting… definitely some grunting… but I will do it!! I can do things. I’m not ready to be written off yet. Clare 1 : Parkinson’s 0. I’m winning. I’m winning at small things but that’s still winning.

Some people have more than their fair share of horrible things happen in their lives. Usually lovely people, who never moan or complain, they just deal with whatever life throws at them, in the best way they can. These are the people who make the most of what they do have and appreciate the little things. These people tend to truly understand love and happiness and don’t take anything for granted. They are content and happy with lives despite having to overcome huge difficulties. Then there are those people who don’t appreciate what a good life they have. Nothing really bad has ever happened to them so they have a skewed perception of what constitutes a hard life. They don’t have financial or health worries and from a materialistic perspective, they have everything they want/need in life… but it never seems to be enough. They are generally miserable people who moan and complain their way through life and never find true happiness because what they are searching for doesn’t exist. I think it is in us all to have periods of depression but it’s how you get yourself out of it that matters. I don’t think I fit neatly into either one of those groups… I am happy with my life. I appreciate my family and friends and the fact that I have a job I (mostly) enjoy. I have my health. It might not be perfect and the thought of Parkinson’s produces a reaction in people which confirms to me that they are very glad they don’t have it, but I’m dealing with in the only way I know how, head-on, bull in a china shop! If it means being a Parkinson’s Warrior in my nightie in the garden at all hours of the day, then that’s what I’ll do!! I say it all the time, but I’m bloody lucky! My life could be so much worse. So you will see me laughing and drinking gin and going out and spending time with my fabulous family and friends. You will rarely see me crying and bemoaning my life nowadays, not because I don’t do it, but because I don’t want that to be my public face, that’s not how I want to be remembered… Clare, who had Parkinson’s and was a bloody misery. It’s like a huge weight being lifted when you see yourself properly for the first time and make a conscious decision about how you want the rest of the world to see you, to know you and to remember you. You can paint that picture, even if it’s covering a lie, but you can choose what you present to the rest of the world. So in that sense, you control your destiny. Don’t get me wrong, I will still have days when I bawl and cry and stamp my feet (foot?!) at the injustice of it all but that is the private me. To the rest of the world I look fine and I seem really well… that picture must not change.

There was a point to this post and I appear to have strayed very much away from that point… I believe I am inherently a good person. I would never go out of my way to deliberately hurt someone or do something bad in the truest sense of the word. Part of my Parkinson’s journey, in terms of acceptance of my diagnosis and motivation to embrace the treatments, has been to take part in Walk for Parkinson’s. I have benefitted personally from this and also contributed to the Parkinson’s community as a whole, with my fundraising efforts. Surely this is a good thing?! I don’t understand how someone could publicly belittle my efforts and try to shame me for having an amazing group of friends who want to support me in these endeavours??!! I suspect that anyone who cannot embrace the efforts made by others to do good things must not have a very happy life herself… I mean, why else would you do that?? Don’t worry, you haven’t put me off… and you won’t stop me doing the the things I want, and absolutely need, to do. Save your childish tantrums for people who share your misery. You won’t bring me down! In fact, you’ve made me all the more determined!! You don’t like the fact that we refer to ourselves as Joeys, but why does that actually bother you so much?? Don’t worry, you’ll never be one… a Joey, or a friend. I only have good people in my life. By choice.

Speaking of Walk for Parkinson’s, we did it!! It rained… a lot! But I was surrounded by wonderful people and we did it! After all it was only rain. My boys and nephews were first over the line… of course! And we raised the respectable amount of £579 although it there is still a fair amount to add to that total. After sharing a lovely lunch, we went our separate ways, safe in the knowledge that we had achieved something amazing… bring on the next one!! A few rays of sunshine would be nice next time maybe?!

When I was off sick last year my lovely colleagues bought me a rose. Well, what they actually bought me was a couple of bare twigs and a plant pot! I have nurtured that rose, even developed a love of gardening because of it, the sentiment behind it was so great… And now it has grown and developed into something wonderful…. but that first elusive bloom taunts me every day. It hints at the flower it will become, not quite opening enough to display it’s true beauty. I’m so impatient…

So here I am, sitting in the sunshine in my garden, wearing what Joe refers to as my LGBT t-shirt, drinking my favourite cider and appreciating my lovely life. This is me!

Two Joeys released into the wider public arena, totally unsupervised… I mean really, is that wise?  But we did it.  Karen invited me to enjoy her birthday treat of Afternoon Tea (with gin!) at Marco Pierre White’s in Birmingham. What’s not to love?  The day went a bit like this: train, bumping into Sarah and Jo, walking in the rain pretending we knew where we were going, shopping in the big new Primark – Karen thinking she was outside when we were still in the shop, more walking in the rain with absolutely no clue where we were going, finding Marco Pierre White’s completely by accident, realising it really is high up, enjoying a very leisurely and delicious gin afternoon tea, talking, wondering why some people go out if they are going to sit there stony-faced and miserable, being slightly amused when a young waiter knocks over a glass of water all over the stony-faced women, overhearing said stony-faced woman complain about the lack of variety on the gluten-free menu, eating every last morsel of the delicious gin afternoon tea, being photographed by a random stranger whilst sitting in Marco’s chair, more walking, more shopping, coffee, more talking, trying to get on the wrong train and failing thankfully.  An utterly fabulous day!  Thank you Karen for generously allowing me to share it with you xx

Sam turned 14 this week.  Birthdays are usually difficult because he either asks for nothing or asks for something which is impossible to buy.  This year it was the latter.  Items only available from America which had sold out.  Great!  So I got him the closest alternatives which he seems to be happy with, thankfully!  He would never complain about gifts anyway.  I made him a ‘Ben Shapiro’ cake, after much googling to find out who the heck he is?  Apparently I should know??!!  Sam could not believe that I’d made this cake.  He was absolutely incredulous.  I mean it was just a photo I’d had printed onto fondant but he couldn’t believe I’d thought of it.  He couldn’t stop grinning!   Birthdays for Sam are usually quiet events.  His restricted diet means eating anything exciting is difficult and his lack of friends means organising social activities is also impossible.  So imagine my surprise when he text me from school asking whether he could have friends round after school.  And they came!  Two boys from his class.  They were loud and commandeered my living room to play games on the console but I didn’t mind.  Sam was doing normal 14 year old boy stuff.  It’s difficult to know what he thought of it because he rarely expresses pleasure or even happiness… ‘This is my happy face’ is a regular retort.  But it is such a big thing!  It has taken 14 years for this to happen.  Something so insignificant and ‘normal’ to most kids is massive to us.  I wonder if it will happen again…?  I won’t push it. Today we are going to Wing Wah for lunch.  Sam’s choice.  We have to go with his choices because he rarely gets to make them.  So by this afternoon I’ll likely be in a carb coma on the sofa…

I think I’ve mentioned before that I’ve suddenly developed a love of gardening?  Well it’s not so much a love of gardening, more a love of having a nice garden.  The effort it takes to get results is offset by the results themselves.  My garden is minimalist by design because I cannot physically maintain anything too gardeny…  However I have developed a love of roses.  Since my wonderful colleagues bought me a rose when I was off sick last year, the pressure of not killing it has turned into a bit of an obsession to maintain it in the best possible way.  I ‘check’ it every day!  I’ve no idea what I’m checking it for  but I feel better knowing I have.  It is on the verge of blooming and I’m so excited to see it!  I was given two more roses by my boys for Mother’s Day and they are receiving the same level of care and attention.  I also have Monty Don’s Grandfather (my dad!) giving me regular rose care advise.  He is not happy that my roses are ahead of his… what can I say?  I must be naturally green-fingered…  I bought another rose this week.  It’s a very special rose, in memory of my Father-in-Law, Steve.  It’s called Just Steve.  I’m going to plant it today.  There hasn’t been a funeral and we have nowhere significant to go to remember him so I thought it would be nice to have a rose for him.  He used to call me his ‘flower’ so it seems fitting.  RIP Steve xx

I’ve entered a cake into the RCM IDM Bake Off.  I haven’t told anyone (until now!) because I don’t want people to vote for me just because they know me (I do know that is how the winner wins!).  It was a personal challenge.  I wanted to see if I could do it.  I wanted to see if a person with Parkinson’s could create something acceptable and relevant.  And I believe I did.  I accept that it’s not the best entry but it’s good enough to be included and that’s good enough for me.  I’m glad I had a go and achieved pretty much what I set out to.  I didn’t tell anyone in case I couldn’t do it.  Regardless of how I am now, the expectation is always there that I will do it, and I needed to take that away so I was just doing it for me.  Good luck to everyone who entered.  There are some really fantastic cakes on there.

I had rehab on Friday.  It is Specialist Rehabilitation for people with Parkinson’s.  You get to see all of the specialisms over one afternoon so you don’t have to keep going backwards and forwards over lots of different days.  It’s really helpful for me to fit it in around work (usually!).  I find sitting in the waiting room a bit depressing.  I know everyone there has Parkinson’s so it’s like a glimpse into the future and I don’t like what I see.  I am invariably always the youngest person by decades…  I know I should see this as a motivating factor to do everything in my power to slow the progression of my Parkinson’s but at the moment I don’t, and can’t… I view as the inevitability of the disease.  These people are all taking the medication and doing the rehab but they are still like that.  The little voice in my head then pipes up and points out that I should imagine how bad they would be if they weren’t doing all of that?!  All that aside, I didn’t have to suffer the humiliation of the weigh bridge this time – I’ll take that as a small win!  I saw the OT who is lovely and finds me a bit of a challenge.  This time we worked on my insomnia and fatigue.  The plan is to cure it with mindfulness and an afternoon nap, and if that fails, to see the GP for sleeping tablets.  I don’t plan to do that but I do intend to change my daily routine around a bit as a lot of her suggestions made sense.  Hopefully resolving the insomnia will also help with the fatigue.  I need to resolve it as my ability to drive is also threatened and I can’t be without my car.  We also discussed some of the cognitive issues I’m having.  They were minor enough to be irrelevant but I’ve noticed recently I’m struggling a bit more so she’s referring me for that.  Everyone occasionally struggles to find a word they are thinking of but I am doing it many times a day, and my vacant episodes are becoming more frequent.  I find I stop talking because of it.  I’m not being ignorant or miserable, I literally cannot join in.  Then I saw the physio,  She is a specialist Parkinson’s physio and very bossy!!  I like her because she got the measure of me straight away!  She says I lack motivation (really??!!) and confidence in myself.  My right side is significantly weaker but she says I use that as an excuse not to do things because I tell myself I can’t.  So on Friday she taught me how to get on and off the floor using mainly the strength from my left side.  It was ridiculous because I told myself I couldn’t do it, I told her I definitely couldn’t do it, and yet, by the end of the session, there I was doing it.  It wasn’t at all elegant or graceful but I was doing it.  Parkinson’s is all about slowness of movement.  So they time you doing pretty much everything!  My challenge on Friday was to sit on a chair with my arms folded and then stand up and sit down five times in quick succession.  My time (10.1 seconds) fits me ‘neatly’ in the ‘Elderly Frail’ category!  How funny is that?  I mean, I’m never going to be athletic, but elderly frail at 46??  She did go on to point out that ‘elderly frail’ is consistent with someone having Parkinson’s at any age… well thank goodness for that!!!  I have some very exuberant Parkinson’s Warrior exercises to do until I see her again in June.  Better crack on…  Did someone mention a nap…?

I’m not sure this link will work?? https://www.youtube.com/watch?v=1l2530HqUFs&feature=youtu.be&fbclid=IwAR1rRnoRhMGWaGNk_BtGHm4oFlGUDkasmCebVM1GgtMtPipn6_iWdOKoqGw  But I feature in this Parkinson’s awareness video 🙂

 

N.B.  There are references to death and grieving in this post, so if they are triggers for you, probably give this one a miss.

I haven’t posted for a while.  My emotions and mental state have been all over the place so I wanted to wait until I was a bit more stable before posting again.  Absolute stability is never going to happen so I figured it was time to get back at it.  It’s been a funny few weeks.  The roller coaster ride that is my life has been hurtling downwards and spiralling uncontrollably for a while now, but I finally feel as though we are climbing back up that hill again, and I hope we can sit at the top and enjoy the view for a little while, before we’re pushed over another precipice and plummeting into the unknown…  I’m so dramatic!  But that analogy of the roller coaster is exactly how I feel…

My father-in-law died on 23rd April.  The details of that are private but suffice it to say, the initial impact of that, and the subsequent shock waves which have hit our little family unit have been huge.  There’s the loss of a person who has been part of your life for a long time.  And then there’s all the little but connected things, which you didn’t appreciate or acknowledge until the person is gone.  The family members you haven’t heard from in years, who suddenly come crawling out of the woodwork and have an opinion on what should happen next…  Crawl back into your hole.  Where were you when he was ill and needed help?  Grief has a way of hitting you at the most unexpected moments, the triggers are surprising and unforeseen.  And the guilt…  Why do we feel so guilty when someone dies?  Live for the moment.  Do all those things you promise yourself you will do one day… don’t put them off.  What are you waiting for anyway?  Don’t feel bad for enjoying your life…  RIP Steve, forever your flower…  #cancersucks

I’m going to feel bad now for talking about happier stuff but that’s just how my life is, up and down… did I mention a roller coaster??  Anyway, it’s me, so it’s not all happy!  I’ve struggled with my own grief.  I’ve struggled with supporting Mark in his grief.  He, in turn, has to be there for his mum who is disabled and does not leave her flat.  His sister Jules is one of the most incredible human beings I have ever met, but she can’t do everything.  So yes, it’s been a stressful few weeks.  Added to that, the 10 visits it took for British Gas to finally fix our boiler, and it’s been a pretty crappy Easter all round!  This has taken it’s toll on my health and I can feel things slipping, just a little bit.  My ability to cope is waning.  I have started dropping things on a daily basis.  I am having more periods where I’m ‘switched off’ and cannot function at all until my brain decides to switch on again.  I do get how infuriating that must be for everyone around me…  I’m having episodes of dizziness and extreme fatigue.  I’ve never experienced anything like it and I can’t even begin to explain to you what it’s like.  People tell me they’re tired and I want to say, here, try this for just one day and then tell me you’re tired!  I’m worried that I’m getting to the point where I’ll fall asleep during conversations.  That will mean the end of a lot of things which I currently take for granted but that is actually how bad it is getting.  I am regularly completely overwhelmed at work.  Inside my head I am screaming at myself to get a grip but I just can’t.  I don’t want work to become a problem.  I need that for me.  I am hoping that it’s just stress making my symptoms worse and affecting my ability to cope.  It will get better, won’t it?

It’s not all doom and gloom though.  My boys are still being amazing.  I don’t want to jinx anything but I am so proud of all three of them.  Tom is doing great things at uni and surprising himself with every fantastic result he gets.  Hard work and determination definitely pays off!  Joe has just had his year 10 mocks and pretty much got the equivalent of A’s across the board.  And Sam… infuriating as ever with his stubbornness and literal thinking but coping better with school than he has for a long time.  No school refusal this year which is a massive achievement for him!  He also has a friend!  Not a friend in the true sense, but a kid in his class who he references as someone he talks to.  He’s even been to his house, which is huge!  Only once, and he wouldn’t stay for tea… (Sam: I told them pizza is disgusting) but he went…  My boys are my constant.  I can rely on them to make me smile, intentionally or otherwise…

On Friday night I went out out.  It was the lovely Jayne and Hilary’s retirement do.  It was an evening of gin and food and chocolate fingers and a dubious Rod Stewart tribute act, and talking and laughter… a lot of laughter!  It was very much needed.  The highlight would have to be Cat accidentally headbutting a stranger (sorry, Cat!) and then Lisa checking the back of Cat’s head for the woman’s teeth.  That still makes me laugh out loud when I think of it now!  Happy retirement Jayne and Hilary!  You have left a hole in Maternity at QHB that is impossible to fill xx

Fun times ahead next week too.  Afternoon tea with gin with the lovely Mrs Shenton.  I’m sure there will be a tale to tell after that little adventure to Birmingham…  Then it’s Sam’s birthday so more celebrations to enjoy.  He’s not happy that his birthday falls on a school day AGAIN so we’re eating out today at a restaurant of his choice (beige food anyone?!) and will be hitting a theme park when we can fit it into our increasingly busy schedule.  His cake this year will be literally ‘epic’…  And on Friday I have more Rehab.  Not my favourite thing in the whole world but I tell myself it’s doing me good.  It is, isn’t it?!

 

Before I start, I must preface this post with a little bit of background… We’ve been having issues with our boiler for 3 weeks now. An intermittent problem with hot water has resulted in 7 visits (plus one no show) from British Gas engineers, several parts changed, many hours wasted waiting for phone calls/engineers, losing the plot and screaming like a crazy person down the phone, and making a very lengthy complaint but not actually resolving the problem. In fact, it is now much, much worse! We don’t have any hot water at all and the central heating does not work. This has been the case since last Wednesday. They apparently cannot attempt to fix it until next Wednesday because Jonny has the part we need on his van and isn’t back at work until then. Seriously??!! So on Friday I spent a ??happy?? morning watching the boiler. Watching and waiting and fiddling with buttons until the flame icon flickered briefly on the display. Then it was action stations, as I screamed like a lunatic, ‘Now, now, now! Turn it on!!!’, and the nearest terrified child ran into the bathroom to turn on the shower before that elusive little flame flickered off the screen, and it was too late. Chance missed. When I say I spent all morning doing this, I’m not joking. Eventually that little flame icon lingered for a second too long and we caught it. Feeling triumphant I luxuriated in the first hot shower I’d had in days (that makes me sound skankier than I’d anticipated…). I left it running, knowing this would be our only chance at hot water, and shoved Sam in while he protested that he doesn’t usually have a shower at lunchtime… Every few seconds I screamed through the closed en suite door, ‘Don’t turn it off!!’. He successfully had his shower so I herded child number two towards the bathroom as Sam stood dripping wet in my bedroom declaring that he was still putting his PJs back on… The last thing I shrieked at Joseph, before he disappeared into the steamy heat was, ‘Don’t turn it off!’. So what did he do? Yep, of course he did, he turned it off. The little flame icon flickered for a second and instantly died. Panicking, I quickly turned the shower back on knowing our window of opportunity had just slammed shut. Hastily, I ushered a reluctant Tom towards the shower, telling him to ‘jump in while it’s still hot’, but knowing deep down that the temperature display on the boiler was already ticking down at an alarming rate… Tom got out grumbling that he must be jinxed because it was cold for him… he must never learn the truth!

And so to this morning… I never imagined I would voluntarily take a cold shower. I won’t hesitate to add that it was very much a case of necessity over desire… I did briefly toy with the idea of boiling the kettle many, many times and filling the bath, but since Parkinson’s has become the dominant feature in my life, I can no longer take my weight (and there’s plenty of weight to take!) on my right arm so getting in and out of the bath (without the aid of a hoist or a team of attractive firemen) has become virtually impossible. And a strip wash just doesn’t suffice. So a cold shower it would have to be… I spent several minutes deciding whether it was better to turn it on first and ease myself in gently, inch by inch, limb by limb, or get in and turn it on, thus having to endure the initial freezing shock in one excruciating hit?! I choose the latter and was pleasantly surprised to discover that the water streaming from the shower head was in fact tepid, indeed it was verging on lukewarm! I indulged in a lengthy soaking and quickly realised that the temperature was rapidly plummeting. There was no little flickering flame icon to save me now… I leapt out of the now icy droplets, shrieking my head off and uttering a stream of expletives, as I realised I had neglected to actually wash while there had been a mere hint of warmth. Berating myself, I lathered shampoo into my hair and washed my body. I then had the dilemma of how to rinse my hair and body with the minimum amount of flesh actually touching the freezing torrents. I had a brainwave! Turn it off and turn it on again. That fixes everything. It didn’t. Predictably, the water was consistently cold. I tried to adopt a position where I was arching my back backwards so only the ends of my hair were touching the freezing water. This caused me to make a weird ‘hoo, hoo, hoo’ sound and jump towards the back wall of the shower cubicle, where I stood trying to catch my breath as the icy water dripped down my back. So I tried leaning forward into the shower stream, so again only my head was immersed. This was actually worse. I could barely catch my breath enough to utter the expletives which flowed with uncharacteristic ease. I then became aware of hysterical laughter coming from the bedroom next door. Hysterical to the point of asthmatic wheezing and desperate coughing. Seriously lacking any sense of humour by this point, I demanded to know what was remotely amusing, only to be drowned out by the incessant Muttley impression coming from the other side of the bathroom door… Still soapy, I bit the bullet and dived under the water for the minimal amount of time necessary to rinse off the soap. I turned off the shower panting and gasping at the shock of just how cold it really was and wondering how I’d survived without actually having a heart attack. Job done! Now that it was over I concluded it actually wasn’t that bad… That is until I have to repeat the process at 5.30am tomorrow morning before I go to work…

Happy Easter!!

Do you ever just feel really happy?  You can’t pinpoint why as nothing special or unusual has happened… but do you need to?  I think it’s unusual for people not to have issues to deal with and worries in the back of their minds, so blissful, unprovoked happiness is not what we’re used to.  Don’t get me wrong, I have so much going on in my life, keeping my mind whirring and disturbing my sleep…  but this week I’ve just been happy.  Little things have given me a lot of pleasure.  It really made me think that I need to stop striving for the big things.  They probably won’t make me happy anyway.  You just continue to strive for bigger and better things instead of enjoying what you already have…  Life’s too short for that.

This week the sunshine has made me blissfully happy.  I love a sunny day.  I’ve been sitting in the garden appreciating every last ray.  I’ve enjoyed gardening.  I never in my life imagined that I would use the words ‘enjoy’ and ‘gardening’ in the same sentence,  but I found myself ringing my dad in excitement that my rose has buds…  I spent a happy afternoon at a garden centre with Joe, creating a mental wish list and choosing particular plants suitable for particular conditions.  I’m now the proud owner of a row of coloured pots which hang from my fence and will brighten a blank space when the plants within them grow and bloom.  This makes me smile.

I’m loving spending quality time with people.  Joe is such good company.  He makes me laugh and we have some intelligent discussions about life and the future.  He’s coming out walking with me today, ‘in case you need picking up…’?!  But it’s always better to walk with someone.  You look far less dodgy if you’re with someone.  If you walk alone, it raises too many questions about why you are there, where you are going and what your intentions may be…  Being on your own with a dog is perfectly acceptable however! I need a dog…  I found one this week, named him and imagined my life with this little dog in it… but Mark said no.

I also had a wonderful evening with wonderful people.  My friends.  I love it when a shared look or a single word can render you paralysed with laughter and unable to move for fear of peeing yourself.  Or maybe that was the gin??  Bad parking, cake gate, anagrams, baby names, Scottish actors, slimy walls, green fingernails, paying to win, hysterical laughter, fantastic company…  I’m glad we’ve pencilled in another date.  Everyone should have a bit of this in their lives.

And even the crappy, everyday stuff has made me smile.  We’ve been having issues with our boiler.  Today was the 7th time the man has been out to look at it, and drink coffee and confess that he doesn’t know what’s wrong with it…  Nothing remotely funny about that, or the cold showers we’ve endured…  Mark has become obsessed!  Every time someone turns on a tap or tries to have a shower, he leaps up and videos the boiler…  I’m not even joking…  He says it’s evidence for the man.  This all sounds fairly reasonable, if a bit extreme…  What he didn’t mention to the poor man was that on Sunday morning he filmed the boiler wearing only his pants, and can be seen in all his glory in the reflection, when he played the video back!  Now that did make me smile…

I’ll leave you with the outtake shots from my contribution to the Parkinson’s video…  No idea why these didn’t make the cut??  Video not yet available but don’t worry, I’ll link it when it is.

 

Someone’s given me the lurgy (thanks Tom!) and I’m feeling rubbish. If you thought I sounded croaky at work yesterday, you should hear me today. So I’m dosed up and surviving on a diet of Lockets and Fishermen’s Friends. My enforced quarantine has given me plenty of time to think and do online shopping (don’t tell Mark!) and binge watch TV dramas… I’m now completely up to date with The Victim and The Widow and have made an informed decision not to watch any more of MotherFatherSon… I’m feeling shakier than usual – lurgy and Parkinson’s is not a useful combination. So I’m feeling proper sorry for myself! And I’m on annual leave – of course!! I’m trying to make plans to do stuff with the boys but at the moment I can’t. Sam needs to know everything in advance and once you’ve made plans there is no changing them. But equally, not making plans is just as bad because he will believe we’re not doing anything and if I feel well enough to go somewhere, I will be springing it on him last minute which he will struggle to cope with, even if it’s somewhere he wants to go… #autismlife

I’m moaning and I promised myself that these blog posts were not going to be a self-indulgent whinge-fest… I hate having down days because I have nothing to be down about. I have a good life. I have my boys. I have Mark. I’m fortunate to still have both of my parents in my life and various members of my extended family who are always on hand with love and support. I have my wonderful friends. I have work. I have hobbies I can still enjoy. And I have my cats. I tried to persuade Mark that I needed to ‘rescue’ a beautiful ginger kitten today, but he wasn’t falling for my argument that I’ve never had a ginger one… I could just get it… I mean, would he even notice, really??? So yeah, I have it petty good. Minor inconveniences in the grand scheme of things…

As part of my little online shopping spree, I’ve ordered a pill reminder… You can set up to 8 vibrating alarms to remind you to take your medication. So that won’t be at all annoying at work when every three hours, everyone is looking around on the ward to find the source of the annoying beeping… and it will be me!! I can guarantee I probably won’t realise either and will join in the search… #Joey

I’ve restarted my photography course. I really enjoy it and appreciate how important it is to have a little bit of ‘me’ time. I’m determined not to let Parkinson’s get in the way of this little hobby… And with that in mind I’ve taken the plunge and entered one of my photos in the British Journal of Photography’s Portrait of Britain. I don’t think for one moment that it will get shortlisted but just entering has done wonders for my confidence. I’m hoping this lurgy I’ve succumbed to will do one so the boys and I can get out on some road trips, camera in tow…

Big shout out for Parkinson’s Awareness!! It was the day on 11/04/19 but it’s also awareness month for the whole of April. Thank you for all of the love and support I was shown on Thursday. As I said then, I’m nowt special. I’m no different to anyone else who has Parkinson’s… really!! In fact I probably moan a bit more than most… Anyway, I’m possibly featuring in an awareness video so watch this space 😳😳😂

Hmm so a post about a mighty turd got more of a reaction than anything else I’ve written this year!! I don’t have any more turd stories… maybe I should call it a day?? 😂. However, you can’t get rid of me that easily… I am the proverbial bad penny…

Next week is World Parkinson’s Awareness Day – 11/04/19. I’m sure it’s Awareness Week or Month too…? Maybe?! So in the spirit of raising awareness and the new ‘Parkinson’s is’ campaign, here’s my contribution…

Parkinson’s is changing me, subtly and intrinsically. I’m not the person I was last year. Parkinson’s is robbing my children of the mum they grew up with and Mark of the wife he fell in love with. Parkinson’s is exhausting and relentless and indomitable. My life is now an interminable cycle of insomnia, work, medication and exhaustion. Parkinson’s slows down your world so you function in parallel to everyone else, where time passes quickly but you move so, so slowly. Parkinson’s is making more time for the simplest of tasks. Nothing can be done in a hurry any more… your kids ask you why you’re ‘just sitting there’?? Even thinking takes more time now. Parkinson’s is pain and stiffness and rigidity and frustration. Imagine not being able to make your body do what you want it to?! I can’t put my right foot completely flat on the floor. It curls stubbornly so I’m forced to walk on the side of my foot. Parkinson’s is not being able to put your socks on until your tablets kick in. It’s not being able to turn over in bed or to stir a saucepan. Parkinson’s is anger and guilt and tears. Parkinson’s robs you of your facial expression, but then what do you have to smile about? The end of the story is inevitable…. isn’t it??!!

I have so much to smile about! Whether my face manages to portray that is another story but I’m pretty lucky. I have an amazing family and wonderful friends whose support is unwavering. The people who have wavered have to live with that and find their distance means they don’t feature in the good bits. I’m sorry I can no longer be the person you want/need me to be. I am lucky that I can still work with an amazing bunch of women. I am lucky that I can find ways to carry on doing the things that I enjoy. I’m lucky that I only have Parkinson’s…. So on Thursday I will be wearing my Parkinson’s pin on my uniform and doing my bit to raise awareness because most people really don’t get it. I wouldn’t ever wish for someone to walk the proverbial mile in my shoes… let’s face it, it would be impossible without my rather splendid walking poles!! Everyday I am forced to consider what I’ve lost but that is nothing compared with everything I’ve gained in love, support and friendship…

Before I start, I must point out that if you are of a nervous disposition, or remotely squeamish, you should probably give this post a miss. Don’t say I didn’t warn you!! The tame introduction will lull you into a false sense of security but things will quickly take a turn into cast-iron stomach territory… the things my midwife friends and I will happily discuss over lunch but will repulse the majority of the normal population…

I am a midwife. I’m very proud of that. It’s the sort of job that impresses other people when you tell them what you do. It is also the sort of job that other people can’t imagine doing because it involves working unsocial hours for relatively little pay, dealing with life and death and bodily fluids and orifices… Yes, there are babies but that is such an infinitely small part of what we actually do. I am a midwife who has Parkinson’s. I have to put aside the fatigue and pain and stiffness and rigidity and slowness of thought to continue to do the job I love to do. I continue to function on very little sleep, a handful of Celebrations and a cup of tea if we’re lucky, remembering to take my medication in a hastily snatched break. Yes, I have reduced my hours and changed my shift pattern and there are a couple of things I can no longer do but I am a midwife and plan to be for sometime yet… until my Parkinson’s symptoms defeat the medication and I’m forced to give up the job I love.

Midwifery unavoidably involves contact with various bodily fluids. It’s an accepted part of the job – vomit, blood, urine, liquor and faeces. The yucky stuff. We all struggle with one or another of these but we deal with it in a professional manner and carry on with our job. Yesterday I was anything but professional… Yesterday I had to give a woman in my care an enema. It is not common practice in midwifery for women to have enemas any more… but very occasionally it is something we have to do. So following the indignity of having to have me to administer the enema, I gave the woman some necessary privacy while the enema worked its magic. Naturally I decided that would be a good time to have my break. When I returned to the ward my colleagues reproached me for leaving them to deal with the aftermath of the enema… Feeling smug, I went to talk to the woman about the effectiveness of the enema…. It was at that point that the MSW called me into the toilet with an, ‘Er Clare, you might want to look at this…’! Sitting in the toilet bowl was a turd of such magnitude… it resolutely refused to be flushed. I decided it wasn’t my problem and went to locate the domestic. When I passed on my problem she responded with, ‘I don’t carry a tool for that, can’t you find a stick?!’… I kid you not!! A stick??? On a maternity ward??? So I gowned up with every item of protective equipment I could find and ventured back to address the offending turd. It sat there in the toilet bowl, defiantly refusing to budge, no matter how many times I flushed. One of my colleagues helpfully suggested that I smush it up with my hands and then it would flush… there was no smushing that turd. It was hard as a rock and going nowhere. My only option was to lift it out. So there I was, elbow deep in the toilet bowl, gagging and retching as I fished out the giant turd…. I don’t get paid enough for that. Be a midwife they said….

Nowhere in any of the pictures I have added to this post is turd-handling mentioned??!!

Tomorrow it’s April. April Fool’s Day… I’m glad I confiscated the chilli that Sam had secreted in his bedroom to prank people with… More importantly, World Autism Awareness Day and World Parkinson’s Awareness Day both fall in April. Obviously living and experiencing both, day to day, I don’t need one day in the calendar to educate me… But equally, I don’t think one day is enough. For most people, those days will be just like any other and their significance will pass them by. I also don’t think that even my closest family realise or appreciate what it really means to have Parkinson’s, or to raise a child with autism, as high functioning as he may be. That’s not a slight on my family, my knowledge was equally limited until the diagnoses hit us like a tonne of bricks. And I’m still learning. It will be a life long lesson. No two days are ever the same. And no two people with the exact same diagnosis experience the same symptoms to the same degree. I think that’s why it’s so hard. And one day out of 365 isn’t enough to raise awareness. And then of course there are those people who simply don’t want to know. I don’t blame them. I wouldn’t spend time educating myself about Parkinson’s or autism if it didn’t directly affect me. I mean, why on earth would I?? But on the 2nd and 11th April I will be doing my bit to raise awareness. Telling our story, in the hope that someone, somewhere is listening… It is so important to people like me and Sam, to have people who understand that he’s not Rainman and I don’t just shake and walk funny… well actually I do, but it’s so much more than that…

Today is Mother’s Day. The highlights have been, in true Gill fashion, a trip to the tip (I’m so lucky!!), a trip to the car wash (I kid you not!), a trip to the garden centre to get two more rose bushes, cards with questionable pictures which apparently look like me, and chocolates from my boys, and arguing with a teenager of large proportions at the McDonalds drive-through over a bottle of water… funnily enough I was not going to just accept the purple fruit shoot he was trying to shove through the car window… I must have the only teenager on the planet who only drinks water… oh he does drink milk… imagine if I’d asked for that??! So yeah, Happy Mother’s Day!! I’ve done a bit of gardening (yes, really!!) and a bit of baking and had a lovely, but quiet, day appreciating how lucky I really am. Other people value possessions and material things but for me it’s the people in my life and the time I get to spend with them that matter the most. Even the 15 year old who is making me a cup of tea with his eyes closed…. I’m rolling my eyes, not that he can see me.

I noticed today that I’m not worrying about stuff any more. It’s as though I’ve finally accepted that this is my life now. This is how it’s going to be. I have decided to accept it and embrace it rather than fight it. Fighting brings turmoil and anxiety and a constant desire for things to be better. But if you actually take a minute to look at things properly, there’s nothing wrong with my life as it is… Why waste time and energy battling for things to be better when there is nothing wrong with the way they are now? And by whose standards do they need to be better anyway? I think I have finally begun to accept my lot and this makes me happy. I am good enough.