Me and Ol (Ol and I?) are having an early night, in bed by 8.30pm… pretty tragic really. However, the early shift at work followed by normal, basic household chores and finally a lecture from Sam about door locks and worms (of the tape variety…) has finished me off! I’m supposed to aim to go to bed at the same time every night and get up at the same time every day because it helps with the rewiring of the Parkinson’s brain to deal with sleep issues, but it’s just not happening tonight… My body is protesting. It’s not used to this any more. It responds with pain and stiffness and exhaustion at a level I haven’t experienced before. I’m watching the last 2 episodes of Luther in a vain attempt to stay awake… Ol is keeping me company but not doing a very good job of keeping me awake… my alarm is set for 5.15am as another early shift beckons… the norm for most people but a huge test for me. I hope I can do it…

I’ve decided to reduce my hours at work. I’m aware that the implications of doing so are huge and it’s not a decision to be taken lightly… but the implications of pushing myself to work full time are just as huge so I have to be sensible and realistic about that too. You can’t plan every tiny detail of your future because life has a tendency to throw you the occasional curve ball (Parkinson’s, anyone?!), which no amount of planning can predict. So I’m living in the moment, and this is what I need for me to be the best me I can be right now. My boys need me still, so I need to be able to function beyond work. I don’t live to work. I don’t even work to live to the same extent any more. I’m not a very decisive person so I’m quite surprised that this decision has come to me seemingly easily. But my whole outlook on life has changed so perhaps that’s why?

I’ve been trying my best to implement everything from my rehab on Friday. I’m doing the hand exercises and finding them useful. I’m eating a banana a day which is proving miraculous for combatting the restless legs, or rather, leg! I’m remembering to keep everything BIG and today found it is subconsciously creeping into my movements without me having to give it too much thought. I’ve introduced decaf coffee into my life and I’m slowly weaning myself off the many, many caffeinated drinks which are the norm for me. The walking round the block when I get out of the car is more of a challenge. I know I need to get on board with that too though. And I will. So that’s quite a lot of changes in a small space of time. But I need to do it. There is no choice, or pathetic half-hearted attempts. There is too much at stake… I’m not ready to be the old lady singing in the corner of the room yet…

My positive for today is that Sam went to school. He didn’t want to go but he didn’t refuse and he didn’t feign illness. He said he had a terrible day. Kids chastised him for being antisocial but he didn’t respond in a negative way. He managed a whole day at school! The first day of term is always a huge challenge and he did it! I even got a smile from him. That’ll do…

I know I’m a bit late with the whole New Year thing… but just saying Happy New Year doesn’t make it so… So far, 2019 has brought me tiredness, pain, frustration, but also heaps of joy and much laughter. I sense this year will be all about balancing the negatives with the positives, and not allowing myself to be dragged down by those negatives. I’ve had a couple of bad days but today I’ve woken up feeling better than I expected to, so I’m embracing that. Joe and I are off to Birmingham. He has Christmas money burning a hole in his pocket so he will get a Manga store and bookshop fix while I get extra brownie points and to spend some quality time with Meme Boy. I’m sure I’ll have learned some new words by the end of the day! Sam doesn’t want to come. He finds it stressful, and won’t cope with unnecessary wandering, which impacts upon the day for everyone else. He doesn’t see the point in shopping when he can buy what he wants or needs online, and that’s fair enough. He can stay at home with his dad who also doesn’t do shopping… they are very similar those two, in more ways than they’d ever acknowledge…

I got my camera out yesterday for the first time in a long time. I was doing a photography course last year but let it slide when the process of diagnosis took over my life for a while. But I’ve signed up to start it again this month. I enjoy it and to be quite honest, I need the distraction. I need something for me. Unfortunately, apart from Olive, there aren’t many willing subjects around here, so I’m going to use my camera as a reason to get me out and about. And I don’t care how good or bad my photos are because this is just for me! Mark got me a tripod so I have no excuse for wobbly shots now. I just need a willing volunteer to carry all my gear… oh yes, that’s why I had kids!

Tom had an appointment with his IBD nurse yesterday. Apparently he is showing signs that his Colitis has progressed to the next stage. They’ve increased the dose of one of his medications but are waiting for his sigmoidoscopy later this month. As usual, Tom is taking it all in his stride. I could learn a thing or two from him…

So yes, Happy New Year! The Gills will continue to face challenges head on in the only way we know how, and embrace and cherish the good times. My boys will undoubtedly continue to show how amazing they can be and make me proud. Life is what you make it, and from where I’m sitting, mine is bloody good!

Today I smell of bleach… which actually is far preferable to the smell in Sam’s bedroom when we started mucking out this morning… He completely freaked out. Didn’t want me moving his stuff or throwing stuff away and could not cope at all with sorting any of it himself. So we moved his computer downstairs and I cracked on. We emptied his room quite quickly. Everything bleached and vacuumed and Febreezed within an inch of it’s life, including Sam! It’s spotless. All of the stuff he never looks at, but can’t bear to part with, is now sealed in plastic boxes under his bed. We’ve thrown away some suspicious-looking items and replaced all of his bedding. It has taken all day but it’s lovely in there now… It has taken it’s toll on me. My body has shut down. I couldn’t move if I wanted too. I’m just hoping my body regains some function before work tomorrow…

It’s my first early shift in a very long time tomorrow . It’s making me panic to be honest. I’m not good in the morning. My body takes a while to get going. The drugs I take every 3 hours during the day have worn off overnight and I have to wait for them to kick in again. It takes me a long time to get showered and dressed. I’ll probably have to set my alarm for about midnight! I’m sure it will be better than I’m imagining. It’s only natural to fear the worst…

Tom got a belated Christmas gift today… a letter telling him he needs an iron infusion. So that’s a flexible sigmoidoscopy, an appointment with the IBD nurse and now an iron infusion… all in January… poor kid! Colitis, the gift that keeps on giving… At least he’s not back at uni until the end of the month.

But Joseph had some good news! Barter Books have accepted him for his work experience in June! My mum is so excited! She has already done a meal plan for the week… I think it will do Joseph good to go away somewhere for the week, even if he will be staying with his grandma… He is going to have the best time. He will be like a pig in muck all week. He’d better start saving up because I suspect he will come home with a whole new library… I’m a little bit envious!

I’ve been messaged and spoken to personally by a lot of people since my last post. I received a lot of support and some excellent advice, particularly from a very wise and brave person. I intend to embrace his philosophy and see things rather as a reflection of another person’s ability , or disability, to deal with the same difficulties as I now face on a daily basis. It then becomes their problem, not mine, and I can feel lucky that I am able to face all of the challenges life throws at me, when they may not be able to do so in the same way. So I’m in a better place mentally and emotionally, which is good for everyone, particularly the residents of the Gill household! I am however, investing in a thicker skin… just for those wobblier moments, which we’re all entitled to every now and again…

2019 is the year where I put me first for a change. I’m always at the bottom of the pile… but now I need to address my needs first to enable me to be the very best me I can be so that I can be there for everyone else! Is that selfish? Well, tough! I don’t have the luxury of waiting a few years any more. I have to do this now. Bring on the spa days and rehab and lunches with lovely ladies and family time with my boys before it’s deemed ‘lame’ and another furry family member?? Mark?? That would definitely make me smile… *winky face*

I read a blog post today written by another PWP. She was writing about dreams. PWPs tend to have very vivid dreams and also act out their dreams. I know, ideal!! She was saying that in her dreams she ensures she does not have Parkinson’s. How on earth can she possibly choose what she dreams about? My brain must be wired differently to hers… I mean, I don’t have Parkinson’s in my dreams either but that is not a conscious choice… My dreams are usually horrific, traumatic, tortuous and certainly not the stuff of the top 10 dreams you would choose to have… I see them as a subconscious outlet for all of the crap in my life… As realistic as they are, it is perversely reassuring when you wake up and achieve that moment of clarity when you realise it was all just a dream… I’d still rather not have them, waking up in a cold sweat and wondering whether that nightmare really just happened. And then you’re wide awake, and the darkness engulfing you confirms that it is many hours until morning… Every night.

It was busy at work today. I may have only managed a few hours but I’m suffering tonight. Painful involuntary movements plague me no matter what I do to try to alleviate them. So I’m eating my body weight in nuts and trying to distract myself with TV. I wish there was a magic pill to fix this, but there isn’t, you just have to find ways to deal with it. I find pinning the afflicted limbs down, helps a bit. Restricting their movement helps to reduce the overall pain. The boys think it’s funny. I suppose I do look funny a lot of the time. I’m also gurning to briefly alleviate a particularly annoying lip tremor which clearly isn’t a good look… Bring on the rehab, I need all the help I can get!

I haven’t wanted to post. I’ve been miserable. Christmas has only served to heighten this misery. I don’t really know why. I think this year especially, I needed the distraction of other people. We do quiet Christmas, just the 5 of us. I kid myself that it’s for Sam. He does cope better with minimal changes and fuss, but as he gets older he is far more amenable and I think I need to give him a bit more credit and raise my expectations of him. So yesterday was too quiet for me. The boys are at an age where they want to be playing computers and consoles. By not visiting family, or having them visit us, we have enabled our boys to become selfish and antisocial. Family time is then limited and cherished. And you put your kids’ needs before your own, don’t you? Having a birthday so close to Christmas means that I don’t really get Christmas presents. The focus is on my birthday, which is lovely, but Christmas for me is forgotten… a non-event… And it really, truly isn’t the presents, there is nothing I need, rather just the thought… All I wanted this year was a nice photo of them all but that didn’t even happen because they didn’t want to. I don’t make a fuss because it’s their Christmas too… Why should what I want override their wishes? I would love to spend some time with my family over Christmas but we never go. I appreciate it’s a long way to go for a couple of days. I get that. Maybe I should go on my own…? So, I cooked and ate lunch with them and then I watched TV on my own while they all did their own thing.. Joe entertained me intermittently with his new pyjamas and a helium balloon and his new Rubik’s cubes. He’s a good kid. Sensitive, despite the obvious idiocy. Maybe I need to get a grip? What right have I got to be miserable? I am my own worst enemy. I am a proper martyr. When people point out I am miserable and attempt to engage me, I pout and dig my heels in and make myself even more unhappy… I wonder whether I might’ve had a better day if I’d painted a wonky smile on my face and pretended I was happy in my own company??

My PD symptoms have been worse too. I thought I was getting to a point where there were moments when I could forget I have PD. Brief moments of normality. Moments when I’d have to actually check for symptoms which were notable in their absence. And then, bang! They’re back… Tremors in my leg and jaw like I’ve never experienced before, causing my teeth to chatter noisily against my mug of tea and my leg to perform an incessant jig like a one-legged Irish dancer… Just hiding then… Just hiding long enough to deceive me into believing I could get my life back… I have new symptoms too. Well, I think they are symptoms… They could be side effects of the drugs or something entirely separate… but it’s so easy to blame everything on the PD. I start my rehab next week so I will go armed with questions… I hope they are ready for the like of me!

I’ve been to work today. It was a nice quiet few hours and was probably what I needed. Most of the people I work with are so lovely and accommodating and just fabulous people. But some are not. Some need to think before they speak. A flippant, poorly thought out, off the cuff remark can have devastating and long-lasting effects. A joke at my expense is only funny if you know me well enough to know that I will find it funny, or if I make it… God, I’m on one today! Some things just have to be said even though really they shouldn’t need to be…

Tomorrow is another day…

Thank you DVLA for the lovely gift you gave me this morning! Perhaps some consideration could be given to the rewording of the letter you send out. It took a second reading before I finally realised that you haven’t actually revoked my driving licence, although you fully intend to if I don’t respond to your letter within 14 days of the date of your letter, dated the beginning of last week … and it’s Christmas so what are the chances of it getting back to you in time anyway?! Bah bloody humbug!! Folks, don’t get ill… so many hidden implications. Tom may have bought his car at just the right time… Tom’s Taxi has a certain ring to it, don’t you think?!

I need a foolproof way of remembering to take my tablets. Not only do I struggle to remember to take them every three hours, but then when I do remember, I can’t work out when/whether I took the previous dose. I have an app on my phone but if my phone’s not near me I miss the reminder. There are reminder watches but I wouldn’t be able to wear one for work. There are little pill boxes with reminder alarms on them but again, this may not be appropriate/practical for work. Somebody somewhere must have a simple solution.. I can’t be the only person who struggles with this… can I? On top of that, I had to do battle with the receptionist at the GP surgery today… all I wanted was a repeat prescription for the correct dose of my drugs. I pointed out that the PD nurse had recently changed mine but they should have received a letter outlining the changes… ‘Oh we don’t actually read those letters!’… believe me, she did read it!! ‘It’ll probably be done by Friday’… why do I have a funny feeling it won’t?!

Why did nobody ever tell me that there are sing-a-long versions of certain musicals on Sky?! How did I not know this?? No prizes for guessing what I’ve been doing today, in between tidying up and setting the table ready for tomorrow! I should have been on the stage… The boys’ reactions have bizarrely been less than complimentary!

Merry Christmas (the gin is flowing!) to everyone I hold dear… The one thing I’ve learnt this year is to value the people you have in your life… I am lucky and blessed to have some wonderful people in mine. See you on the other side xxx

I thought I was being clever when I issued the boys an ultimatum this weekend. They have until Christmas Eve to clean and tidy their bedrooms to an acceptable standard or I withhold their presents. Joseph smugly emptied his bin and put the clean bedding on his bed and he was done. His room is spotless. He has the OCD gene from his father although thankfully in a milder manifestation. Joe will get presents. Tom keeps asking how tidy we’re expecting it to be and is making slow begrudging progress, but there is progress of sorts. Tom will get presents. Sam needed the task breaking down into smaller tasks to make it remotely achievable for him. He has managed these tasks whilst shouting accusations of child slavery and child abuse and nominations for the worst parents ever. There’s an award I could actually win!! However, there is a terrible smell emanating from Sam’s bedroom, the source of which cannot be determined… Despite cleaning and tidying and emptying bins, it still stinks. We even sprayed his mattress with Febreeze fabric spray, much to Sam’s disgust. ‘I think that is probably poisonous to humans!’… I think the answer now is to completely empty his room… but not today. Today I braved Morrison’s and bought a vast selection of reed diffusers and air fresheners. Mark suggested candles to burn away the smell. In a 13 year old’s bedroom? Is he mad??!! So now every available surface contains something fragrant to try to mask the hideous stench and upstairs now smells like a tart’s boudoir which is still preferable to the alternative! I also had the brainwave of spraying the Christmas trees with Festive scented oil… only I had no idea how strong it was until I’d liberally covered both trees and then found Joseph crawling round the floor claiming his eyes were stinging and his chest hurts… so dramatic!! So now we have post-Christmas fumigation to look forward to… Joy!

A milestone was reached in the Gill household today. Tom bought his first car! I won’t have to drop him off or pick him up from uni ever again!! I must admit, I did a little happy dance at that thought. That is the only downside of him not going away to uni… I feel sorry for him using public transport. Ha… not any more! Happy driving Tom… now I’ll just be a basket case worrying about you every time you leave the house… I thought this parenting lark was meant to get easier?!

I made Christmas Pudding truffles today. The idea was to give them as handmade gifts. People like that sort of thing these days. By the time I’d finished sampling them and wrestling them from the cat, there weren’t many to put in the little boxes I’d bought and decorated in the manner of a demented Blue Peter presenter. You know when you have an image of something in your head and the finished product is absolutely nothing like that image?! Yeah, that! In teen speak that’s epic! For the record, they tasted really good…Christmas biscuits tomorrow, maybe I’ll have better luck…?

Today I felt anxious for the first time in a long time. I don’t know why. I do know that I didn’t want to leave my boys and get ready for work. I didn’t want to go to work at all. But I did go. And it was fine. I was fine. Well, I was as everyone expected me to be. So that’s fine, isn’t it? I get the impression that now that I’m back at work I’m expected to just get on with it. It’s busy and short-staffed and there’s no time or place for special measures or reasonable adjustments. They need people who can just muck in without fuss or complaint. So that’s what I’ll have to be, isn’t it?! That’s what I’ll have to be if I want to carry on doing this job, until my tired old brain defeats the drugs and decides enough is enough. I don’t know if I can do this… maybe trying to be something I’m not is a step too far? Maybe I need to admit defeat. But who gets to decide this? Shouldn’t it be me? I’m not ready to give up yet! I can be useful… However, today I feel like the token disabled person who is kept around to tick a box until they can find a reason not to…

I’ve just been shopping. I don’t recommend it! The shop was empty of shoppers but full of staff and pallets of stuff, creating obstacles at every turn. I had to keep asking them to move which made me very unpopular very quickly… Well, more quickly than usual… By this time of night all my drugs have worn off so I struggled. It wasn’t an easy shopping experience. I only went for ribbon and spent £43… and I had to use the self-service checkout for the privilege. One of the shop workers audibly tutted because I’d bought Lemsip which had to be authorised, so she had to drag herself away from her conversation with her colleague about what they were getting from McDonald’s to do it… She then told everyone within a 10 mile radius that I was too slow and the checkout had timed out… Marvellous! Employee of the year right there…

Thank goodness for tomorrows when you’ve had a bad today…

Not sure whether combining gin and Lemsip and my other drugs was wise last night… completely knocked me out!! Yep, for my birthday someone gave me the lurgy… I have a couple of prime suspects. I’m not complaining really, it’s just a germ-ridden time of year. I’m surprised I’ve avoided it up to now really. I’d read that when you are feeling under par your Parkinson’s symptoms get worse. Yeah, that’s true… And that’s the main reason for the delay in updating my blog… I wasn’t actually conscious!

So here we are. My birthday! The first one since I became a PWP… not that that changes anything. My celebrations started early with breakfast with my Joeys. I thought we were swapping Secret Santa gifts but they surprised me with birthday gifts, a balloon and a fabulous pavlova. Oh my days Karen, that pavlova is sooo good! My birthday cake hasn’t been touched! Breakfast was the usually Joey delight – gossip, counselling, lots and lots of mickey-taking and hilarity. Cat’s impression of Kaz standing up will stay with me forever. I still laugh out loud every time I think of it… I couldn’t ask for a better start to my birthday – spending time with the best people! Thank you ladies, for breakfast and the gifts and cards and pavlova and for just being you ❤️ xx

My actual birthday day started very early with my mum and all her cronies from her old lady exercise class serenading me with a rousing rendition of ‘Happy Birthday’! Picture the scene… It’s 7.40am. Mark and I are in bed. The phone rings and I automatically put it on speaker phone… to hear a crowd of elderly ladies singing Happy Birthday! Mark nearly leapt out of bed. Too funny! But thank you ladies. It was lovely, if somewhat unexpected… I have been totally spoilt this year, from the birthday wishes on social media, to the generous donations to my YOPD fundraiser and all the gifts and cards. You have absolutely touched my heart in such a fundamental way. I had a lovely day of celebration with my little family, nice food and apparently too much gin. We did however, manage to uphold the Shenton birthday tradition before I passed out… 😉😂🙄😂

Joseph and Sam have broken up for Christmas now. Yesterday they both came home with Gold Awards for outstanding attitude to learning and Sam got his brown/white belt at Karate. Ending the year on a high note boys, thank you!!