It’s been a year since I last saw you, Gran, or touched you or spoke to you or heard your voice. I miss you. I miss seeing you in your chair when we come to visit. I miss our chats over a cup of tea, always Ringtons and a chocolate biscuit or a piece of cake, putting the world to rights, and you telling me stories I’d heard before but really didn’t mind hearing again. I miss seeing you sitting in the conservatory lost in a world of music or an audio book. Your music tastes always made me smile… Il Divo was a favourite but then who doesn’t also love a bit of Westlife?! Your taste in television was questionable, never missing an episode of Jeremy Kyle, even at the end when you had little sight left, you’d listen to each episode, tutting loudly and berating the guests. I miss you Gran. I think of you fondly when I see your hanky in my drawer or smell your perfume or wear your ring. I have such lovely memories of my childhood, camping with you in Scotland every summer, coming for tea every day after school… always a pudding, sleeping under striped flannelette sheets, piles of blankets and a candle wick bedspread when we stayed at your house, your apple cake, Monty and sitting in the back yard… When I think of you, I think of golf and holidays in Portugal and bingo and family… Happy memories of the matriarch of our family. You brought us all together, the tie that bound us. It’s different without you… not better or worse, just different.

I can’t believe it’s been a year. So much has happened. So much I want to share with you. So much I’m glad you didn’t get to know. I wonder what you’d make of it all? I miss you xx

I wasn’t going to post tonight because I’ve been feeling so poorly… after my strange episode at work last night, I developed an excruciating headache but only on the left side of my head. I would’ve happily believed that I had an aneurysm or was having a stroke… Joseph helpfully asked me whether I could smell burning toast as a fail safe way to rule out stroke, but as I don’t have a sense of smell anymore it didn’t prove to be a particularly reliable method… So I went to bed and tried to sleep it off, but being a terminal insomniac, that was never going to work either. I’ve felt rubbish and out of sorts all day… but then something happened which has prompted me to post…

I went to Sam’s Parent’s Evening. I didn’t want to go. Last year we were both reduced to tears and it resulted in me making a formal complaint. I couldn’t put him through that again. I couldn’t put myself through that again. I have done a lot of groundwork with school since then, put lots of things in place to help Sam to have a successful school experience, moved him into a different form and educated the staff about autism and internalised anxiety. I did cry tonight, but this time they were tears of relief and pride. Now that the staff understand my boy better, they have created an environment for him in which he can thrive. He is growing in confidence and achieving amazing things. I am thrilled that they are now seeing the boy that I see and they are actively helping him to reach his potential. They all said such amazing things about him. I now have a glimmer of hope for the future. Tiny changes make a massive difference to this kid, you just have to persuade people that those changes are worth making. I’m so grateful that his teachers are embracing him and helping him to be the very best he can be. I know there will continue to be bumps in the road for Sam but moments like this will encourage him to keep going. He is already doing phenomenal things… As I left tonight, one of the teachers stopped me and thanked me for having three fantastic boys because he has been lucky enough to teach them all… that’ll do x

Today I went to work. I had a funny turn, an episode if you like… I still don’t really know what it was. I just know I didn’t feel right. People noticed and asked me if I was OK?! I just said ‘no’ because I wasn’t but I couldn’t say why. It was as though my brain had shut down briefly. I couldn’t function. I know I was just staring blankly into space. Even one of the women in my care asked me if I was OK…. It took me a while to snap out of it… And even when I could function again I still didn’t feel right. My thoughts have been muddled… I have struggled to find the words I wanted… I have walked into things multiple times… I just feel ‘off’… I hope this is a temporary blip because I don’t like feeling like this. I think people are getting fed up of me now. I think they would far rather work with someone fully functional. I think they are sick of me asking for help. I’m consciously trying to reduce the amount of help I ask for. I desperately try to limit it to the things I literally cannot do myself. People are refusing to help me now. So I’m learning who not to ask. I wish they could see that it’s not just that I can’t be bothered to do something. I work with some people who happily delegate virtually every single task. I don’t do that…. it makes others resentful and less willing to help. Fortunately, there are plenty of people who are still willing to help me. I hope they don’t get fed up of me too… The silver lining to this cloudy day is that I left work on time today. Yay!

Tomorrow I’m going to sleep, during the day! I was told not to sleep during the day because it will impact on my ability to sleep at night. I don’t sleep at night anyway so any sleep I can get, day or night, can only be a bonus surely? Then hopefully I might be able to string a sentence together by the time I have to go to Sam’s Parent’s Evening… watch this space. If he asks me one more time what I’m planning to say to each and every one of the eleventy million teachers I have to wait an unfathomable amount of time to see to then be told the exact same thing the previous teacher told me… (they could at least pretend to know my kid…), I might just scream!

Sam cooked bolognaise sauce at school today. He did a good job considering he doesn’t eat mince or any vegetable other than raw carrot, and we’ve eaten it with giant fusilli tonight. Yum! And I didn’t have to cook! However, every time he sees me he asks me if I’ve been poisoned… should I be worried do you think?!

Today has been interesting. Today has identified things that are difficult for me but equally, many things that are not. I learned a lot. And I laughed a lot. Laughter is excellent therapy. I learned I’m not very good at quizzes where only one nominated person can answer the questions… who really wanted to win chocolate anyway?! I learned that nothing is absolutely impossible. There’s always another way of doing something to get the same result. I learned that it’s always better to do something than to do nothing at all. But mostly I learned that people have my back. People care. People want to help me. And I’m not some crazy, emotional woman losing her shit for no good reason. I spend so much time and energy masking symptoms and worrying about the things I can’t do, I forget about all of the stuff I can do. I need to stop being so hard on myself. I’m at work tomorrow. I will not allow what happened last week to happen again. As sad as it is, I’m looking after me. Just me. So tomorrow I will finish my shift on time. And I won’t cry in my car. I won’t be driven to that though, will I?! Because I’m looking after me…

Sam has been lecturing me about debt tonight. Why? Because I bought him a new coat. He questioned my ability to pay for it and then asked me what other debts I have. He is wise beyond his years and is already planning how to pay off the mortgage he doesn’t yet have. Does this mean one of my boys might actually leave home one day?!! I think Tom will be here forever. I mean free board and lodging while he endures around an hour, maybe two, at uni per day… what’s not to love?! Joseph thinks he is Tony Hart reincarnated tonight. He’s been drawing Shaggy from Scooby Doo and got really offended when I didn’t appreciate the relevance. ‘Mother, it’s a meme!’ is lost on me…

Bring on tomorrow… I’m ready for you!!

Today I am tired. Of course I’m tired… I’ve been up since 2.30am. This is my normal. Being awake while everyone else slumbers. I sit downstairs listening to the gentle snoring of one of the cats, the crazy antics of another of the cats as she wreaks havoc in the hall, playing with her mousy, the creaks and groans of the floorboards as the other insomniac member of my family pads about upstairs, and the rhythmic drumming of the rain on the conservatory roof…. This is my life now. Sitting in the dark reprimanding my body for waking me up. I drink tea and watch Netflix, waiting for the sun to rise so I can start my housework. This morning that didn’t happen. This morning I fell asleep at 8.00am and woke up in a blind panic that I’d slept through my pill reminder, knowing this would set me back for the entire day. That sleep was good though. It was worth it! Sometimes sleeping at the wrong time is not worth it and you feel worse afterwards. Not this morning. This morning it was good. I needed it… The past couple of days have taken their toll on my health. Mark commented that I’ve been dragging my leg again. I make a conscious effort not to do that. But today I just couldn’t. The effort was too great… so I’ve dragged my leg and moaned that my arm won’t do what I want it to. I managed to make a banana loaf for the boys so it hasn’t been all bad!

I’m counting down the days until my annual leave… One PROMPT study day, three early shifts and one Parent’s Evening are all that stand between me and a week off. A week of self care and rehabilitation. A week of being kinder to myself. A week of selfishly only doing the things I want to do. A week with my boys. Bring it on… I want to go somewhere I’ve never been before. I want to spend an entire day reading, losing myself in someone else’s story and forgetting my own for a while. I want to get outside in the fresh air, to appreciate the simple things. I want to enjoy being in the company of my boys, they are growing up so fast, I know they won’t want to hang out with me soon… 5 days and counting… I will walk out of work on Friday and I won’t look back.

Today and yesterday I was late getting home from work. This is the downside of only working until 3pm. It’s great when it’s not busy or someone is coming on the late shift to hand over to… but on days like today when the workload is heavy and you are leaving them short-staffed, it is difficult to leave. You want to make it as easy as possible for your colleagues by getting as much done as you can and by staying so they can at least grab some lunch, having sacrificed your own lunch to do so. Some days I know they appreciate what I try to do. Other days when you’re trying to hand over your ladies, an hour and a half after the end of your shift, and people are blatantly not listening or talking over you, you wonder why you bother…?! You bother because the women deserve it. You bother because you care. You bother because the culture is bitchy and people are quick to point the finger when someone doesn’t pull their weight. You bother because you already feel as though everyone is watching you, scrutinising your every move, looking for any excuse to get rid of you. It takes huge amounts of effort for me to just get through a shift, masking symptoms and trying not to let the side down. But I look fine… so I must be fine, right?! Today I got in my car and cried. I cried from exhaustion and relief and disappointment. I know it’s pathetic and it doesn’t make you feel any better but I needed that emotional release… for me. No one else. So then I went home knowing I would have to leave the house again almost as soon as I got home, to drop Mark off at the garage to pick up his car and then to pick Joseph up from Repton School. I don’t remember those journeys I probably shouldn’t have been driving. But it’s done now and I’m at home, in bed, having eaten my body weight in Chinese. I am useless now. Too tired to mask and in too much pain to move or sleep. I take my medication closer together than I should when I’m at work which leaves me struggling when I get home. Usually I crash and can’t fight the sheer exhaustion but tonight the pain in my leg is ridiculous. I’d never heard of dystonia until last week and now I curse it’s existence… the pain is excruciating… Mark has noticed the downturn in my usually jolly demeanour and is being particularly lovely, having bought me chocolate and waited on me hand and foot. Joseph is being as entertaining as ever by laughing in Japanese… He should be a form of therapy! Thank god for my boys. Despite the tears and sadness and pain and exhaustion of today, I will take away the hug and heartfelt good wishes from one of our consultants… I will relish the sentiments of the women in my care, one of whom told me repeatedly how lovely I was and another who couldn’t thank me enough for taking the time to sit down and explain something to her. That’s why I will keep doing this…

I’ve been reading about music therapy and Parkinson’s. Listening to music, singing or dancing increases natural dopamine production. The rhythm of certain types of music can help with the initiation and performance of particular physical activities. I realised I have been using music a lot at home. I always have music in the background when I’m at home. I get stuck on a particular song and have Alexa play it on repeat, over and over and over again, much to the boys’ annoyance. I wonder whether the rhythm of that particular song keeps me going and motivated?! Subconsciously I’ve been creating my own music therapy. Who needs rehab and support groups anyway?! Ha, that reminds me, I found a video of a high intensity Parkinson’s exercise group. I watched it with mixture of emotions. I mean, as a person who doesn’t do exercise, anything is going to be high intensity…. however, I could easily manage the exercises in this video. I laughed when I watched it and then felt offended that the physio felt this level of exercise was beyond me, or maybe her point was that it really wasn’t and I simply don’t need that sort of exercise group yet? It’s so easy to misconstrue the intent of such a comment when you are still feeling raw and sensitive and new to all of this…

Today I have done very little. I was up at 3.15am. And then back in bed at 8.30am after everyone had left the house. I managed a couple of hours dozing and then forced myself to get up, hoping I hadn’t slept too much. My day has consisted of hair-dying, crumble-making, TV-watching, shopping and Kata class… Wanshu anyone?! Obviously I was just watching the Kata class… And yet I’ve struggled to do any of it. The dystonia I’ve been experiencing is worse. It’s affecting me walking. I will address it with the PD nurse next week if it doesn’t improve… but then why would it? I’m not actually doing anything about it … Work is going to be fun tomorrow… but I’m not moaning. God forbid I should have something to moan about!

Tonight I am thinking about a friend who had surgery today. A friend who has already gone through months of chemotherapy to get her to the point where she could have surgery today. The next battle in her cancer journey… She faces it all with such positivity and determination. I could learn a lot from her. Lots of love xx

I’ve been in regular contact with Sam’s Head of Year. Normally any contact is instigated by me, generally because Sam’s needs are not being met. This time however, she approached me, initially to highlight how brilliantly Sam is coping at the moment, but subsequently to discuss the options process. I’m liking this reversal. I’m loving the positivity. She wants to anticipate any difficulties Sam might have during this process and address them before they happen. I love that she has even considered that he might have difficulties. The only problem will be if he can’t do the combination of subjects he wants to do. She will give me advance warning of this and is going to have 1:1 sessions with Sam to help him. I love it when I don’t have to shout and scream and stamp my feet to get support for Sam. They have considered his needs. That’s all I ask. Long may it last!

Joseph got a level 9 in an RE exam this week. He only lost one mark. He has decided, on the back of this, that he must be a prophet. He sent me a photograph of his paper in case I didn’t believe him… Bizarrely, all my boys have excelled at RE. Joe is now considering his future career prospects after I told him ‘Prophet’ wasn’t a big earner… nor is it an actual career choice… think again Joe!

I’ve developed another symptom. Dystonia. It’s excruciating. I can’t cope with it at all. Tonight I swore… a lot… and cried. Usefully, it’s either caused by the Parkinson’s or by the medication I take to treat the Parkinson’s. I’m keeping a note of when it affects me so my Parkinson’s nurse can work out which cause is more likely. Fortunately there are treatments. Unfortunately it will probably mean more medication. Lord help me if I have to remember to take something else!! I wish there was one pill that cures all. Instead my future looks full of brightly coloured pills and patches and exercise regimes and risk assessments and assessments of needs and appointments and groups and rehab. What a thought… But it’s good that I have all of that, offered to me as a matter of course. I’m lucky I can access the help and support. I’m just lucky. But woe betide anyone who tells me it could be worse…

My dad’s mother-in-law died very suddenly today. She had vascular dementia and was in a nursing home but seemed fine when they saw her on Sunday. She was a lovely lady. RIP Doris xx

In the spirit of being kinder to myself, it is time to admit that I’m not doing so well… Things could be better… My ‘good’ is not good enough. I don’t know whether I expect too much or I’m being unrealistic, but I do know I’m not happy with the way things are. This might be my ‘as good as it gets’ but I need to know that too so maybe I can learn not to be so hard on myself… I’ll be very disappointed if that is the case though. I have things to do, my own personal mountains to climb. I need a little bit more… So on Monday I’m going to ring my PD nurse. I need someone to hear me. Family and friends can support you and sympathise but I need someone to have the answers to my impossible questions. Lisa, my nurse, may not have the answers but she will be straight with me. She will tell me to get a grip and to recognise what I have achieved rather than what I haven’t. She will reassure me that it’s going to be ok in a way that no one else can because she actually knows that it will. And more importantly she will tweak my medication a bit which will make me feel better for longer and give me a little bit of hope again… In the meantime I will continue to be hard on myself, and get ridiculously frustrated when my body won’t function in the precise way I want it to… Because I need to keep going, wobbles and all…

I received an email from Sam’s Head of Year this week. Normally such correspondence is met with a huge amount of trepidation because the contents are never positive… When I read it I cried… The comments praised him and the person he is becoming, the person who rarely shows himself for fear of retribution or humiliation. My wonderful, unique creative boy. He showed them. He showed them all! He is amazing and they recognised and acknowledged that. Go Sam! You proved to the world that neurodiversity can be a strength… Always a winner in my eyes ❤️ x

Mark and I met up with a couple we know last night. He has Parkinson’s too. He is the only other person I know with Parkinson’s. He is 4 years further down the line than me so it was interesting to see how he is and hear his perspective. He views his Parkinson’s differently to me. He doesn’t want to know what might happen. He just wants to deal with the here and now. He doesn’t see the sense in worrying about things that might never be an issue for him. I get that, but I do wonder if it’s perhaps an issue of time? This is all still relatively new to me. I’m still blaming everything on the Parkinson’s so knowing more about it is useful for me. He presents very differently to me. He doesn’t have a tremor and his symptoms affect his non-dominant side. I don’t know if that makes it better. Probably not. There is no ‘better’. He has an interesting philosophy and says that Parkinson’s has made him more laid back and tolerant. He doesn’t get worked up about little things anymore because in the grand scheme of things, the small stuff doesn’t matter. He’s still working full time and his neurologist says he is functioning at 90 – 95% of normal. That gives me hope! I don’t think I’m there yet… but what shocked me was the drugs he has to take to achieve that normality. I know our journeys are individual and therefore different but I didn’t imagine it would be such a relatively rapid progression from no medication to requiring several different drugs just to be able to get out of bed every morning and function like a relatively normal person… I suppose deep down I knew it but didn’t like to acknowledge that it could also be the case for me… only the timescale will differ but no one knows by how much. I’m glad I have the opportunity to talk to someone else who gets it, who really knows what it’s like. He’s also a very positive person which was good for me. I needed to hear that it doesn’t have to be the end of the world… because there are still days when it feels like it might be. He said it’s not the first thing on his mind when he wakes up anymore. I’d like to be able to say that one day.

I read something on a forum I’m a member of where someone was complaining that people tell her she looks really well. She felt as though people weren’t acknowledging the seriousness of her Parkinson’s or that they believed she must be faking… I have a few thoughts on this. 1. Does she actually want to look ill/run down/like she’s struggling? I know I don’t. 2. People genuinely don’t know what to say, so isn’t saying that better than saying nothing at all? 3. It does make me think that people who say that don’t get it, but how could they? It is your diagnosis and your experience. Only you can know how you really feel. It is such a complex diagnosis, people can’t be expected to understand the true impact, and not would I want them to! 4. I think there needs to be greater awareness and understanding of Parkinson’s, particularly in younger people, because it is so much more than a tremor. It impacts on every single aspect of my life. But I don’t think Joe Public can be berated for not having that understanding. That’s a whole other debate. I just want to be accepted for me. I want to be able to go out and have a laugh and do what I always did. I don’t want my Parkinson’s to be the only thing that people think they can talk to me about. When people ask me how I am and I say I’m fine, my ‘fine’ is probably very different to everyone else’s ‘fine’ and some days I’m actually not ‘fine’ at all. But that’s OK. I will continue to say I’m fine because I need to believe I am, or at least I will be…

I’ve been up since 4am. I’ve done all my housework now so I can spend the day doing nice things. There is a silver lining to the insomnia cloud! Sam is not coping with the cold weather. He is disgusted that I am sending him to school. I gave him some gloves yesterday but he refused to wear them because he said he couldn’t feel anything with them on… in fact he came home from school in a short-sleeved shirt and his blazer, carrying his coat and ‘those bloody annoying gloves’! If he doesn’t report me for being a terrible parent, someone else surely will!! He’s been wiping his nose on his blazer sleeve. When I commented in a negative way about that he said no one had supplied him with tissues… they have now!! Answer for everything, this kid… He’s going to be very disappointed when he gets up and realises it hasn’t snowed so school is open… yay!