I deserve an award… not the sort of award Sam gets for being amazing… more the sort of award which acknowledges my crappy parenting… What’s worse is that I’m secretly impressed with my son who has made me look like a terrible parent, OK so I am a terrible parent, looks are not deceiving… so if you’ve got Social Services on speed dial, get dialling. Sam has been a bit off colour. He’s very dramatic when he’s ill and regularly diagnoses himself with something dramatic and incurable… It’s always vital to nip things in the bud. So I have been known to medicate him prophylactically on occasion in the past. If Sam believes you acknowledge his symptoms his perceived illness is far less devastating. So I discovered tonight that unbeknownst to me, Joe has been giving Sam cough medicine… Sam does have a cough. It’s not a bad cough, more annoying… I’m impressed that Joe would think to do that, but equally I’m appalled that he thinks it’s ok to dole out drugs to his little brother… so Branston’s youngest pharmacist has had his career abruptly curtailed!!

We’ve had some good times recently. My mum came to visit last weekend. We indulged in lots of nice food and putting the world to rights. It was nice to have some time off that was proper time off, spent doing nice things… Sam won an award at school on Monday. He absolutely astounds me when he challenges himself. He is definitely destined for great things. A university tutor acknowledged his potential and told him he will go far in life. And he will! He had to stand up in front of his entire year group to give a presentation and answer questions. Not only did he do that on his own but he got up again at the end of the day to explain things further. When I asked him why he did it when everyone else refused, he replied simply, ‘well that’s what we were asked to do!’. His rigid thinking actually worked in his favour… Go Sam!

I’m trying not to be negative but I’m not having a great week… overworked, overtired, overemotional and overwhelmed… that’s me, all over! I’m trying to be kind to myself. I’m trying to face my demons without persecuting myself too much in the process. Im trying not to cry in my car when I can’t meet my own expectations. I’m trying to have some guilt-free me time. I’m just very bloody trying! I had a massage at work this week. Just a 10 minute back and shoulder massage as part of their scheme to promote wellbeing in the workplace. Just a few minutes to remind me that I need to look after myself. I spend way too much time overanalysing symptoms and blaming everything on the Parkinson’s… A headache can just be a headache after all… I read the blog of a fellow Parkinson’s sufferer. He was talking about the Parkinson’s demons in your head. And he is so right! Well my demons had better watch out!! I’m going to beat them with my walking poles.., literally and figuratively…

That’s it. I’m done. I’m finished. I have reached the end of my rope. I have nothing left to give. I am not enough. I want to be all things to all people… I have failed… miserably. This week has broken me. This morning as I dragged myself out of bed half an hour earlier than normal, to give me time to feed the cats and make Sam’s lunch and sort the washing before I got ready for work, I cried, noiseless tears of self-pity. Crying is wasted energy… you don’t feel better afterwards and you look like crap. But as fat wet tears rolled down my cheeks, I panicked silently about not being there for my dad who was readmitted to hospital. The ambiguous text I had received was doing nothing to reassure me that he was OK. I panicked about work and how I would get through the day. I panicked about the mental list of things I had to try to fit in to the small window of time I would have between getting home from work and collapsing into bed. I panicked about trying to get everything done before my medication wears off and symptoms creep back silently but painfully. My symptoms are worse so now I’m also panicking that my medication isn’t working well enough any more. Or I’m actually getting worse… Or it could just be stress…. don’t get stressed they said… these experts need to meet my family and then tell me to avoid stress!!

In the spirit of turning negatives into positives…. and despite all of my failings, perceived or otherwise, I was fortunate to be part of a lovely team today! Thank you, especially to my fellow plebs who made me laugh for all the wrong reasons… I feel I am destined to be a pleb forever but if we can have a laugh, I really don’t mind. Can I be a Joey and a pleb? The membership criterion are probably pretty similar…?!

Joseph and I spent an hour waiting at the GP surgery. He entertained a largely non-English speaking audience by solving his Rubik’s cube repeatedly. He’s quite the Showman… he had them in the palm of his hand… I mean, it was only a Rubik’s cube!! And then when he’d finished telling everyone that he is my carer… and offering to heave me off the ridiculously uncomfortable seating after my leg had stiffened and seized… Joe saw the message on the electronic message board, about only discussing one issue per appointment, as a challenge rather than an instruction… He came out of the Dr’s office triumphant that both of his issues had been addressed! His ‘personal’ issue with an in-depth science lesson (the mind boggles!) and the lump in his ear with some basic first aid. He was delighted that he had beaten the system.

My mum is coming tomorrow. I was going to put her off in view of the persistent sickness and misery which has befallen the household… but I decided if she didn’t come, I’d just be miserable and resentful on my own all weekend. At least if she’s here I will feel obliged to do something nice. I can’t wait! Even if we don’t do anything exciting, just having her here, to talk to, will do wonders for me… time to be a tiny bit selfish. The world won’t end…

Today has not started well… it’s my one day off between my shifts.  Mark has some sort of hideous gastric flu which I do not want to catch!  So being a very caring and empathetic wife, I slept downstairs… those vomit aerosols are lethal!!  I say I slept downstairs… I didn’t actually sleep.  The cats kept lining up beside me every time I tossed and turned, and huffed and moaned, in the vain hope that I might get up and feed them…No chance!  So I’m tired and achy and grumpy, and Mark is now comatose in our bed…  And Sam decided this morning would be a fantastic morning to refuse to go to school… awesome!  He had an accident at school yesterday and injured his shoulder quite badly.  It amazes me how little you are informed about your kids when they reach High School.  According to Sam, his arm was literally hanging off, a teacher looked at it and told him not to do PE…  that’s it?!  No thought that his parents may be worried about what had actually happened?!  I was actually worried that he may have broken his collar bone… not worried enough to take him to A&E…  I’m not crazy… just worried enough to give him paracetamol so he would let me press on his collar bone and wave his arm around.  The swelling on his shoulder has gone down this morning, so I’m sure on this occasion, my bad parenting instinct was actually correct… Sam was not convinced… his anxiety was sky high and he was rocking on his bed wailing at me that he couldn’t possibly go to school.  I impressed myself by remaining calm and logical and accepting his fears.  I promised I would get his teachers to listen and let him read the email I sent to the useless SENCO and his Head of Year.  I told him that for today he could be Joe’s buddy and if he was really struggling, I would collect him at lunchtime.  He was stubbornly resolute.  He knows I cannot physically get him there if he refuses to go.  So then I told him I wouldn’t be at home this morning because Tom’s going into hospital.  That’s partly true.  I dropped Tom off at 9.00am for a flexi sig… no way am I sitting in Endoscopy for 4 hours…  but Sam doesn’t need to know that!  And he seemed to have forgotten that his dad was currently collapsed in bed upstairs having forcibly voided from almost every orifice all night…  there are benefits to having no empathy!  So that was the little chink of hope…  I kept him talking and motivated and bribed him with too many little packets of chocolate fingers… but he’s gone!  I am sitting eating my body weight in baked oats… my new most favourite thing to have for breakfast… and all day apparently… not daring to go anywhere, or do anything useful, in case the phone rings and I have to go to school and do battle for my boy or go and get the bad news from Endoscopy… at least the sun is shining!

My walking poles have arrived.  Joseph has thoroughly tested them… and declared them no good for parkour… cos I’ll be doing a lot of that!  It’s a beautiful, cold, bright, crisp winter’s day… I should be out testing them, and my ability to use them without breaking my neck…  I mean, I only have to walk… how difficult is that?!  I just need to find somewhere secluded to give them a whirl… just until I can walk further than round the corner to Sainsbury’s for cake/sweets/chocolate/wine…  I will report back when I have.

I was thinking this morning about not having a sense of smell.  it’s almost completely gone now.  I can only smell some very strong smells, and some if I literally stick my nose on the source of the smell.  It saddens me.  Smell is so important for all sorts of reasons that most people don’t give a second thought to.  I miss it.  It makes the world very bland and flat.  I’m not complaining.  Just a little bit sad.  Don’t get me wrong, there are plenty of things I’m grateful not to be able to smell!  Every cloud…

I decided to do Walk For Parkinson’s this year. There are events all over the country but I asked my mum if she’s do it with me as an excuse to do it in Newcastle… So the idea of me dragging my dead leg and my mum who falls over thin air, schlepping along the Quayside in Newcastle to raise money for Parkinson’s UK was born… Only now it has grown into something wonderful and to date there are 13 of us walking together as a team. I know I keep saying it, but I have some amazing people in my life… to think they would give up their Saturday for me. Joe thinks it’s a race and is determined to ‘win’… It’s not until May so I have plenty of time to register us as a team which is harder than it sounds when you’re technically disabled… and then I need to set up a Just Giving page… I apologise in advance for blatantly bugging you for sponsorship but it is (I am) a good cause!! Honestly… It also means I have to get out walking between now and then. Walking any sort of distance is so difficult for me so I need all the practice I can get! And this is just the motivation I need. I will finish the walk no matter how long it takes me… even if Joe has to walk ahead of me with gin/chocolate/cake… With that in mind, I have ordered myself some walking poles… so if you see a crazy, middle-aged woman staggering around Branston, looking as though she’s lost her skis (and her mind!), that’ll be me… in training!!

I delivered a baby today. I know, I’m a midwife so that’s generally a given… but I haven’t delivered a baby for months and months. In fact I don’t work on labour ward at all any more… Today was an accident. A happy accident. A woman on the ward laboured very quickly. It was lovely. It reminded me why I do this job. And it was a massive confidence boost for me. Fight or flight kicked in briefly but there wasn’t time to back out… this baby was not waiting. I’m glad I stayed and faced my fears. I was very well supported by some lovely colleagues and I’m very grateful for that. It’s made me realise that I can do more than I think I can. It’s important to have a go when it’s appropriate to do so. I might just surprise myself. I’m fortunate that it was so spontaneous and I didn’t have time to go through my long list of what ifs… I barely had time to get my gloves on!! I did struggle standing beside the bed. And I wasn’t there for long! I need to find a way to move or support my leg while in that situation, should I ever have the good fortune to do it again! I need to push myself a bit more. I have a list of things I’m not confident to do at work. I ticked off quite a few of those things today. Today is a good day. Clare 1: Parkinson’s 0.

Alexa has screwed me over. When I’ve asked her to play my ‘zen garden’ to help me sleep, she ‘can’t help me with that’ all of a sudden…?! Oh no, but she can help Joseph when he asks her to blast Despacito in every room of the house… But not my little bit of sleep meditation. No, it’s almost like it’s beneath her to do that… Not entirely sure that it’s possible for Alexa to hold a personal vendetta against someone, but I am feeling persecuted!! And tired! I need someone to blame so she’ll do… I’ve had to resort to using my phone which isn’t ideal. First I tried Yoga Nidra… I don’t recommend it. The noise they play in the background is something akin to having a demented mosquito stuck in your ear. It drove me to the point of wanting to hurt someone and certainly did not induce ‘deep, relaxing sleep’ as promised… So then I moved on to an app which uses hypnosis to make you ‘fall asleep fast…’. Yeah, the mad-eyed woman spinning the wheel was not getting control of my mind! Finally, after wasting half the night trying to find an app, I found one I could just about tolerate and managed to get 5 hour’s sleep which is good for me…

It’s been a busy week. I haven’t had a day off where I could just do nothing. This week I had my disability assessed. It was interesting. They ask you a series of questions about your medical conditions and how you manage them. Then they examine your physical and mental health. Personally, for me, the physical examination demonstrated neither my abilities nor my disabilities… it would appear that you are only disabled if you can’t march on the spot or put your hands behind your back?! Of course, there were other elements to the examination but it did get me wondering how fair all this is to people with lifelong conditions like mine?! I mean, I don’t actually want to be disabled so I’m glad I aced their little test but their are people who struggle but not necessarily in those ways… I wish I’d asked what their little examination was designed to prove! They declined to perform the examination of my mental health because I’d already demonstrated that I had no issues… no issues?! I’m not sure close friends and family would agree!!

My boys have been lovely this week. Funny and chatty. Tom aced his maths exam so he’s in a good place for going back to uni in a week’s time. Joseph was asked to buddy a new student. Not entirely sure what his head of year was thinking?! This poor kid didn’t speak any English and followed Joe everywhere. Joe being Joe introduced him to everyone as his son… By the end of the first day he’d lost him. By the end of the week it had dawned on the school that this boy didn’t speak English and couldn’t cope in top sets so Joe lost his new buddy. I can only imagine that boy is breathing a huge sigh of relief! Joe starts his Computing Masterclass today. So for 6 Saturday afternoons we are Joe free! I hope he reigns it in and pretends to be normal for a couple of hours… Year 9 is having a University Day. All the kids in Year 9 are split into groups and then spend the entire day doing university related activities, with a presentation at the end of the day from each group of students. It is already filling me with an impending sense of doom… Joe did it last year. Stuff like that doesn’t phase him but he didn’t get much out of it. Sam will struggle. He avoids group work at school as it is. Some of his teachers allow him to do group work on his own because he finds the other kids so intolerable. I’m dreading the fallout after a whole day of enforced socialisation… I feel an email coming on…

I’m working a late shift today so the 4am start bodes well… I have to do battle with the optician this morning. The girl who answered the phone told me my neurologist was wrong when he said I shouldn’t wear varifocals any more. Cos of course, she would know… being highly qualified and all that??!!! Anyway, I’m ready for them…

I haven’t posted for a while. A few things have prevented me from doing so. Having thought I’d pretty much cured my insomnia, I’ve had the worst week ever, not sure why?? Waking at 1.30am and then falling asleep right before my alarm at 5.30am is no fun. I’m also at a point where I could happily suffocate Mark with a pillow… the snoring, the breathing on my arm making it cold, just the breathing really… I mean I wouldn’t smother him obviously. I couldn’t be bothered, I’m too tired for that. Tiredness does peculiar things to a person… I’m lying here now, on my day off, resenting the fact that Mark is very much asleep (and breathing!), while I have a demented, deaf cat sitting on my head and purring so loudly I can feel the vibrations in my jaw…

It’s been a busy week at work so far and I’m feeling the effects of that like everyone else. Tiredness makes all my symptoms worse, and that in turn sets you up for a challenging day because you have to suppress or appropriately manage those symptoms if you want to achieve anything. And that in itself is exhausting. Vicious circle of the knackering kind! Today I’m not at work. Today I’m having my ‘disability’ assessed by someone who has no knowledge or experience of YOPD. It’s almost funny. I’ll go. They can assess what they like. This is me…

Tom has become a driving critic… Every time he goes anywhere he comes back with tales of other people’s driving misdemeanours. I’m never driving him anywhere again! I’m glad he’s enjoying his freedom. He says I lied about his iron infusion making him feel better. So I lied again because I don’t actually know, and told him it takes time to notice the effects?!

Sam announced last night that he has a fractured finger. ‘I’ve fractured my finger. I did it yesterday and you haven’t done anything about it because you don’t care enough about me!’. It’s almost funny. He cannot see things from anyone else’s perspective. Because he knew he’d hurt his finger, he assumed everyone else would know. In fairness to him his finger is black and blue and swollen. Me: Can you bend it? Sam: Well that would be a stupid thing to do because it’s fractured. Me: Make a fist… you’re fine. Sam: I have the most uncaring parents on earth. I had a meeting to go to at work which precluded spending 4 hours in A&E to be told it’s not fractured… Turns out I was so knackered and shut down at the meeting I couldn’t contribute anyway. But it was good to go and be part of it and hear everything first hand. Joe had wanted to come with me. Not entirely sure what he thought the meeting was about but he was very keen?! When I got home he was still saying he wished I’d taken him. I told him it wasn’t that kind of meeting… turns out he’d heard me mention refreshments… nuff said!

I had a near-death experience this week! I decided to clean my oven. I’d bought a new product and was itching to try it. Sadly, it didn’t live up to my expectations or the hype, and I’m not designed for such activities… When it didn’t work as well as I’d hoped, I got my steamer out to try to clean it better. Steam + poisonous product = me on the kitchen floor when Joe got home from school. Not very bright. And I felt proper poorly for the rest of the day. Mark wanted to ring the poisons unit… and say what?? ‘My wife’s an idiot and instead of just inhaling the fumes she’s created poisonous steam which has knocked her out…’. I don’t think so…. it’s simple, I will never clean the oven again!

I’m sitting here listening to Joseph explaining to Sam how to do his maths homework. No one asked him to do it. He’s just a really lovely big brother… sometimes! I’m laughing now cos I’ve just heard him sigh and say, ‘You don’t actually have to get the right answer’… It’s maths, of course you have to get the right answer! They’re still at it so I’m guessing their innate stubbornness is kicking in… refusing to be beaten by mere trigonometry… I’m itching to help but they won’t let me… Sam thinks my brain cells no longer function beyond basic activities of daily living so he’s not going to waste his breath explaining his homework… and Joe always sounds surprised that I know anything, at all… I love my boys…

Joseph uses a lot of teen speak and I rarely understand a word he is saying these days. Conversations with him are exhausting! He calls me fam and says he’s thicc which apparently means something completely different to thick?! This weekend I thought he was calling himself a eunuch… Turns out, after much toing and froing, and way too many minutes of my life that I’ll never get back, he was referring to himself as a unit. It was much, much later when he marched indignantly into the living room to argue the point, having determined what a eunuch actually is… You need to enunciate Joe… or just speak English?!

This week I have focused on small changes. Little, seemingly insignificant, things that are making a massive difference to my life. I’m now embracing the decaf. I overcame the withdrawal headaches and found a decaf tea and coffee that I can tolerate. Fortunately, I often lack a sense of taste or smell so I wouldn’t know what I was drinking… just the headache, or lack of it, gave it away. I’m not exclusively decaf but I’d say, predominantly… go me! The banana a day is easy. I like bananas. I like food. I like eating. There really is no challenge there! I’ve established a new routine at night and utilising sleep meditation (yes, I scoffed at the idea too!) has hugely reduced the frequency of the episodes of sleep disruption and insomnia I experience. This in turn is impacting on my general health and well-being. I’m actually not knackered all the time! I’m becoming a morning person! The process of stopping an activity and starting again with deliberately bigger movements is nothing short of bloody brilliant. It amazes me that something so simple could help me so much. I am beginning to get my head around the fact that this all constitutes a lifestyle change for me. This is my forever. It’s possibly not the life I imagined I’d have but these changes are helping me to be the best me I can be. There’s a way to go… and many more changes to make, but I will do it. Changing things is the easy part. Sustaining those changes and accepting the new you is the hard part. Today I’ve noticed a tiny chink of bright sunshine breaking though the dark grey clouds which fog my mind. That chink was Mark and my boys. They are my sunshine and my normality. They are my constant. My reasons for being. My reasons for not giving into this, for not giving up. Life is still good. We are still happy. It has taken me until now to realise that. And there will always be things you cannot change… it’s how you deal with them that matters. Too many people expect me to give in to this, to accept it and give up. Well, you don’t know me very well then, do you?! Actually, tell me what you really think, I’d love to prove you wrong!

The first week back of school done. He’s been in every day. That’s a huge win! Well done Sam… We had a chat about how the other kids will never change so he needs to employ the strategies he’s been taught to help him tolerate them and get through the day. He shrugged his shoulders and smiled and said he supposed I was right. That in itself is huge, he really struggles to see things from someone else’s perspective. He’s smiled a lot this week. It makes my heart happy… and helps to rationalise everything else. He said he enjoyed karate. I know he loves karate but he never expresses that. I love it when you can chastise him a little bit and he smirks and then full on belly laughs rather than having a meltdown… Thank you for those moments x

In the spirit of balancing negatives with positives, I have been thinking a lot about reducing my hours this week. After making the decision to do it, I had that initial panic and sense of, ‘Oh crap, what have I done?!’… But now I’m seeing it as a huge positive! I’ll finish work at 3pm every shift. That means I’m free every single evening, forever… No swapping shifts to accommodate Joey quiz nights or birthday celebrations or other nights out. I can go to everything! I might become a social butterfly… This doesn’t mean that I haven’t considered the negatives… of course I have. It’s just at this moment, I need this to be a positive change. And it will be.

It’s been a good week in general really. The boys are happy. I’ve been out walking and enjoyed it. Well, I enjoyed it until I realised I’d walked too far and had to get back home… then the school air raid siren went off and I nearly had a heart attack! Is that really necessary?! Not sure what the neighbouring houses must think… So then my challenge was to get home before the hoards of school kids blocked the footpath, pushing each other around and chucking drinks and food everywhere. My leg had given up. I’ve been taught a new way to walk. I know how ridiculous that sounds… but it stops me dragging my right leg and is less painful… to a point. That point having been reached when I’d tried to photograph the resident heron on the river. Joseph: You weren’t being a nonce with your camera behind school again were you?!! I did get home but paid the price with increased pain and stiffness. Such a delicate balancing act… exercise to slow the progression but don’t do too much. My ‘don’t do too much’ bar is clearly set very low at the moment!

Tom has taken me out in his car. I could get used to being chauffeured about! He’s a good driver. Nothing phases him… idiots on the road, blue light ambulances, parking in tight spaces, having me as a passenger… We did have a little incident trying to put petrol in his car… I blame the stupid petrol cap! But I’m massively reassured about him being out on the road and enjoying his new found freedom. Even when your kids become adults, the worry is constant!

I have had a little blip this week. I’m not going to dwell on it but I can’t pretend it didn’t happen. It was a brief moment of recognition and self-pity. A moment of gut-wrenching sobbing in the car… Then you pull yourself together and go home to the normality of the boys assessing just exactly how much onion you’ve put in the Chicken Chasseur and the necessity to include it at all… Its as though it never even happened. But it did. And it is important to acknowledge that it did. I would love to be able to be strong all the time… however it is not a sign of weakness to acknowledge that life is shit sometimes.

Bring on the good times xx

PWPs can have issues with the finer intricacies of personal self-care. There are some things I find difficult but manage to do, and some things where the risks definitely outweigh the benefits… There are also occasions when it is just too much of a chore. I’m a hairy person. Maintaining an acceptable level of feminine hairiness is a never-ending battle. Is there even such a thing?? So I ordered an apparent miracle depilatory cream… from China… in bulk. I know, I know alarm bells should have been ringing… They didn’t. Not even a faint ding in the distance… A word of advice… don’t order products designed to remove parts of your person from a foreign country if you are not fluent in the language of said country. In fact, just don’t, language barriers aside… Indeed, it has just occurred to me, Chinese people are not very hairy anyway…. So I decided to test my miracle cream prior to an appointment where it would become necessary to expose various parts of my body. That was mistake number 1. Don’t test a new product when there are time constraints for achieving a good result. So I thought my legs would be a good, robust, non-sensitive area to put this product to the test. They hadn’t reached yeti status but were hairier than I’d like them to be if I had to get them out. I retrieved the various bottles, tubes and tools from the packaging and therein lay the first problem… I couldn’t read a single word on any of the products… A bit of frantic online searching enabled me to deduce that one was a spray to remove grime and oils from the skin. Not wanting to jeopardise the outcome of the miracle process, I liberally covered my legs with the pleasant smelling green goo… there was no way of establishing whether you were supposed to wipe or wash it off… so I didn’t. Abandoning attempts to deduce further instructions, I then plastered my legs with depilatory cream… it didn’t burn or sting in any way so I took that as a good sign… I had no idea how long to leave it on for and squinted at the minute Chinese writing as though I possessed an innate ability to speak Chinese… Clearly I have no multi linguistic abilities and after much squinting, still had no clue. 30 minutes sounded like a nice round number… don’t just guess, never guess! Who does that?! I asked Alexa to tell me when 30 minutes were up, making a mental decision to remove the cream prior to that if any tissue damage or loss of limbs occurred. 30 uneventful minutes ticked by. The advert for this cream showed the hair and cream simply being wiped away with a wet cloth. Excitement and anticipation building, I armed myself with several wet cloths and set to work. Nothing! Absolutely nothing happened… I scrubbed harder, nothing happened other than the loss of a layer of skin. So I retrieved the little plastic scrapy tool from the box and set to work… again, nothing! Not a single hair yielded to the frantic scraping which was firm enough to remove a few layers of skin, never mind some depilatory cream and a few hairs! So I resorted to a razor. A sodding razor… I could’ve (and should’ve) just shaved my legs in the first place. Shaving removed the hair and some of the cream. I was then left with a layer of something impermeable covering my legs. Nothing could penetrate it. Finally, after using every soap, gel, lotion and potion in my arsenal, and a ridiculous amount of scrubbing, I finally removed every last trace of the depilatory cream which only works if you don’t have any functioning hair follicles in the first place! A five minute job turned into a two hour hair removal marathon. I do not recommend this product, funnily enough…

Insomnia is ruling my life. I’m trying to break the cycle but it’s difficult. After work I just crash which is making the insomnia worse… I was in bed, asleep by 8.30pm last night and I’ve been awake since 3.00am, so I’ve actually had more sleep than normal. It doesn’t feel like it though… The OT told me I have to get up when I wake up, even at silly o’clock. She said if I lie in bed churning things over in my head, I’m not going to sleep anyway. True. I’m not supposed to look at the time either, because that starts the whole, ‘I’ve only got X hours/minutes until I have to get up…’ and that’s not conducive to sleep either… and obviously I haven’t broken that habit yet! I’m also not supposed to do anything when I get up. I struggle with that. I’d normally do 3 loads of washing, prep a meal, empty the dishwasher, do the lunches, sort the cats out, anything reasonably quiet… This morning I’m resisting putting a casserole in the slow cooker… I’m supposed to do something relaxing like a little bit of light reading but if I put the light on the cats will assume it’s morning. They’re already sitting in a line staring at me, their eyes glowing in the light of my phone… I’m doing my best to ignore them… So the cycle continues. I’m supposed to aim to go to bed and get up at the same time every day, yeah that’s going well…

I’ve been reading about the effects of exercise and natural dopamine production slowing the progression of PD… It all makes sense… in my head. Translating that into motivation to actually exercise myself is proving to be more of a challenge. It’s one thing knowing what you should do for the best, it’s another thing entirely to actually do it… but I will. I have to. No one likes change. Even when you know it will do you good. I will get on board. I think I’m just suffering from the January blues. January is a miserable month. That post Christmas slump after the relative highs of the festive season. No one has any money. The weather is dreary. What is there to motivate anyone to do anything new?! Next year I need to plan January better!! Have something to look forward to. I do have something to look forward to. My mum is coming to stay at the end of the month. I miss her. But it still seems so far away…

Today brings hospital visits with Tom. Between us we have appointments most weeks. We have people-watching and attracting odd-bods down to a fine art. Different clinics provide different experiences because they attract different demographics of the population. My clinics naturally have an elderly demographic, generally lovely people who like to chat. Tom’s clinics have a much wider demographic and the potential for odd-bods is much greater… who knows what the people watching us think?!

Is it time to get up yet?!

Edited to add: It’s now 5.30am and I’ve put the casserole in the slow cooker, made Sam’s lunch, put a load of washing on and fed the cats… maybe 5.30am is a good time to start the day?! Every day…?!