My boy has won a Christmas song writing competition! Well, I say won, he’s won in his form and has now gone through to the final. My socially awkward son who chose not to work in a group with the other ‘annoying morons’ has written and performed a song all on his own! He’s full of surprises!! I’m actually amazed that he’s done it… and he was so matter of fact about it when he just told me. I want to see him perform but apparently I’m not allowed… I’m not entirely sure whether that’s all parents or just me…?! Joseph achieved a level 9 in a recent assessment. He says he’s not doing that again because he had to show the rest of the class how to do it. He says he’ll put less effort in in future. I did query what was less than ‘no effort’…?! Nevertheless my boys continue to make me proud… and then some!!

I’m beginning to regain some semblance of normality in my life… and it’s really helping me. Today I’ve felt better than I have done for a long time. Work is providing a good distraction. It gives me something else to focus on apart from whether my drugs are working, or if a particular symptom is better or worse. It allows me to talk to other adults and be part of those unique and usually hilarious ‘you had to be there’ situations. I’ve missed that. The social side of work is seriously underestimated until you no longer have it. Today I worked properly and completely. And it was fine. I provided the same level of care as I would have done before Parkinson’s. And tonight I’m ok. I realise that today I’ve felt really good. Not perfect but to a point where I’ve noticed a difference. I think my drugs are working better following that recent tweak. Of course it could just be a good day?! I’ll take that. Bring on more good days…

Tomorrow is a Joey day! My most favourite kind of day. A Christmas outfit wearing, secret Santa, present swapping over breakfast kind of day. The elf hat may have to make an appearance… is the world ready for that?!

We had a busy day yesterday. Into town for the shops opening because I realised we hadn’t bought PJs and socks for the boys and it’s not Christmas without new PJs and novelty socks! We were home by 10.18 and that included a visit to Iceland to get more Greggs sausage rolls for Sam. When you have a very restricted, beige staple diet you have to stock up on essentials when you can, and Greggs sausage rolls are apparently essential. I then decided to face a particular demon and begin wrapping presents… There is an advantage to having three teenagers in the house: the present piles are significantly smaller, and although the value of the individual gifts tends to be higher, they are now appreciated more by the recipients. To be fair to my boys, they haven’t asked for much and have very modest present piles this year. Mark on the other hand… Then my afternoon was spent at Sports Direct while Joe tried on what seemed like every pair of walking shoes in the shop, posing in front of the mirror with his hand on his hip, umming and ahhing over the colour and style. They are walking shoes!! By the time he’d made a decision and I’d paid before he changed his mind, again, I lost the will to live and sat in the car while he went to the book shop. He loves books and refers to them as his children, calls them ‘my precious’. They are carefully dusted and replaced on his shelves, in order, every weekend. No one is allowed to move them, or touch them or look at them in case they crease the pages or break the spines. I knew at that point I was destined to freeze to death in the car while he was living his best life in Waterstones! And freeze I did. I could not get warm again. Scarf, gloves, giant fleece, hood up and fleecy blanket, and I still felt as though my bones were cold! Mark was amused. I certainly was not! And then I thought it would be a great idea to go food shopping late last night. So I watched the Strictly final and bemoaned the fact that Stacey won, and I watched Michael McIntyre surprise Gino D’Campo and then I decided to go shopping. To be fair, it was a great time to go. We could park at the door, the shop was virtually empty and we got to the checkout without queuing. And, we somehow spent £70 less than we normally spend on our weekly food shop!! It’s a little bit disconcerting because we can’t work out what we didn’t buy… All this and I was feeling rubbish all day too. Just shows what you can achieve when you put your mind to it.

So today I am having a lazy day. A very lazy day. And I feel great! I have listened to Sam complaining about a particular teacher at school and the chemical smell in the house. That’ll be the Deep Heat I loving massaged into Mark’s shoulder before stupidly rubbing my eye… Sam is hypersensitive to strong smells and is letting me know in no uncertain terms, how intolerable he finds it. Tom is extolling the virtues of one type of foam enema over another… And Joe is avoiding me so I can’t ask him about Work Experience… again. I have counselled my mum regarding the slow cooking of a 4.5kg gammon joint and contemplated opening the emergency Christmas chocolates… but I haven’t… yet. Just an average Sunday in the Gill household…

I’ve had an appointment for Specialist Rehabilitation. The first appointment is an assessment with the MDT. Four hours! Not sure what exactly I’ll be doing for four whole hours… or whether they can solve the problem that is me… I am grateful that I have access to such a service though. I need to accept all the help I am offered. Slow the progression and make the most of every possible intervention. 2019 is all about me. What I mean is, all about me being the best version of me I can be. Don’t waste a single opportunity. Don’t let it beat me. I have a life to live, I refuse to simply exist.

I need to stop letting things bother me. I was asked whether I’m upset because my life is shit?! Normally I would not even give a comment like that a second thought. Today it bothered me. The implication that my life has to be shit just because we’ve been holding on to the shitty stick for a while… but it’s not the actual blows that life deals you, more the way you deal with them that defines you as a person. And I thought I was doing ok?? I know I’m doing ok. And on what particular scale of shittiness is my life deemed to be so awful anyway? Who made you the judge and executioner?! And then there’s the implication that I should be upset about it. I don’t deny that I have been upset. I have spent entire days crying at the injustice of it all. But I’m not doing that any more. It’s a waste of time and energy and doesn’t actually make you feel any better. I’d like to think I’m not walking round full of woe and spreading misery wherever I go?! Let it go and cherish the good stuff…

I’ve been to work again today. I love being back. I mean, I’m not back back yet, as a useful member of the team. But I’m in the building and it feels good to be back amongst the lovely team I work with. Today I dipped a toe in and dabbled a bit. Just a tiny little bit… There is stuff I can do. I didn’t do a lot, hardly anything… so why do I now feel so awful. A couple of hours on the ward and my body is screaming at me. I can hardly move. This is a worrying me because I now can’t imagine how I’m ever going to get properly back up to speed. How can I function in any sort of useful manner if my body shuts down after only a couple of hours of not doing much?! I have to remember that I haven’t done anything for months so any change will have a huge impact… I also have to remember that it was evening. I don’t do well in the evening. And my medication is still being tweaked. I am definitely a work in progress. Perfection can’t be rushed… that’s tongue in cheek if you can’t read my humour!

I wrote a huge ranty post and deleted it as soon as I read it. I had taken exception to something someone said to me, an innocent comment which I had blown out of proportion. The rant, I still feel, was justified on the basis that people should give more thought to the person receiving these flippant remarks. What is said in a moment of not knowing what to say awkwardness can have lasting and painful effects. I’m pretty tough these days, most things are like water off a ducks back to me, but sometimes those remarks sting just a bit. And if you allow them to, they eat away at you until you are making ranty posts about it on your blog. For the record, I am not in any way grateful that I only have Parkinson’s Disease, and I don’t need to be reminded that there are people worse off than me. It doesn’t make me, or them, feel any better having you helpfully point that out… And that was me not ranting…

I am trying to find reasons to be positive today. Tom saw his consultant this afternoon. They are struggling to control his symptoms and want him to take two more medications on top of everything he already takes. He has to go in for more investigations and possibly IV infusions as well as everything else. He is taking it all in his stride. I however, am left with an overwhelming feeling of sadness that at 19, when he should be enjoying the freedom that comes with early adulthood and uni life, this is what his life has become. The positive voice in my head would remind me that at least he is being closely monitored and they seem to be doing everything they can and should be. For the record, I don’t actually hear voices… What did you say?!

My dad saw his consultant today too. Fortunately he is doing brilliantly after his surgery. So well that they don’t want to see him again for 6 weeks. He got a telling off for doing too much but if he lays off the star jumps he should be fine… he is fine and that makes my heart happy. And I am joking, of course he’s not doing star jumps 2 weeks after open heart surgery… that would be crazy, wouldn’t it dad?!

It’s Christmas jumper day tomorrow. When did that become a thing?! We can wear Christmas t-shirts at work tomorrow. The boys can wear Christmas jumpers for a small fee to raise money for Save the Children. Joseph has deemed it ‘lame’ and won’t be wearing one. Sam hasn’t mentioned it. It’s not the norm so he won’t be keen. Or he might wait until 08.30 and suddenly decide he absolutely must wear a Christmas jumper. The distinct lack of Christmas jumpers in the Gill household could present a problem in that case…

I did it. I put on my uniform, and it fit, and I went to work. Admittedly I have had a very easy and enjoyable few hours this afternoon but it has allowed me to get over that first hurdle… setting foot in the building! I work with such wonderful people, they made it easy for me to fit back in… I think the brownies I made helped a bit too! Being back, even for such a short time, has made me realise that one of the things I’ve missed most is my colleagues, the banter and camaraderie. I’m still doubting myself a bit, and my ability to do the job. I am aware of my limitations and can accept those but the idea that my every move will be scrutinised bothers me… they won’t be looking at the things I can do, but rather the things I can’t… I think it could be some time before I’m worthy of the badge… I’m feeling good though. Increasing the frequency of my drugs is really helping my symptoms during the day. I do crash in the evening and have regular nocturnal disturbances but it’s still early days. I’m in this for the long-haul after all…

After work tonight I went to watch Sam grading at karate. I love watching him grade. He always gives absolutely everything he’s got. Tonight I bawled. He was brilliant. His Sensei spent 5 minutes at the end of the grading telling the whole group how fantastic my boy is, how much he has grown as a person and progressed in his Karate, and how proud she is of the person he has become. She hugged him. I cried. He cried. He said no one outside of the family has ever told him they are proud of him before and he’s got used to people treating him badly so it was really nice to have people saying positive things for a change. I treasure moments like this. This kid deserves more of them and to be acknowledged for being the amazing person he is. I think that’s probably his brown/white belt in the bag! Watch this space… Love my boy ❤️ xx

I went off sick on 22nd August. That’s 110 days, or almost 16 weeks. Almost a third of this year has been devoted to symptoms and investigations and diagnosis and treatment and care planning and just a little bit of self-indulgent wallowing. Now it’s time to get my life back on track. I’m not entirely sure that I’m ready for all that will entail, and I’m not sure the world is ready for me…?? I’m different, this is a new me, with a new label. The outer shell might be a bit battered and broken but underneath that, I’m still in there, I’m still me… I’m willing to bet there aren’t many midwives with Parkinson’s?! Maybe I have a point to prove… to myself more than anyone else. Let’s just see how long I can keep this going…. At the moment I just need to get through tomorrow, then it will be one shift at a time, and who knows after that?! Watch this space… So I’ll be dusting off my uniform and desperately hoping it fits and beginning the process of finding out how this new me fits into the world…

Wish me luck…

I’ve been up since 3.30am. Parkinson’s plays this really cruel trick where it interrupts your sleep with pain and involuntary movements and then when you need to be able to function, hits you so hard with fatigue that your body simply shuts down or switches off. That’s where I am right now. Somewhere between barely functioning and desperately trying not to sleep so the whole crazy cycle doesn’t begin again. So I’m in bed watching The Royal Variety Show and hoping it is entertaining enough to keep me awake… I will reserve judgement. The boys are just happy that I’m not listening to The Greatest Showman… again! I may have listened to it several times… a day… They are beginning to have violent tendencies when it comes on and I fear for Alexa’s safety… The cats don’t care though…This is me!

I haven’t posted for a few days because I’ve been having a bit of a wobble.  All sorts of reasons… self-doubt… realisation that this is it…  denial…  panic… and just life in general really.  However, life goes on, and so does my blog.  I refuse to give up.  People expect me to which makes me even more determined not to!  We’re all entitled to a little wobble once in a while… It’s the getting back to it and dealing with everything that life throws you that’s important.  Don’t worry, I can still catch… well, sort of…  Bring it on.  I can see 2018 isn’t done with me yet!

I have been to see the Parkinson’s specialist nurse this morning.  It was an interesting experiment to see how I coped with getting up early.  I didn’t sleep anyway so could’ve managed to get up anytime from 4am onwards.  Not sure she would have been keen to see me then though… So I turned up at the appropriate time with a handbag full of gingerbread latte and a perfume not too dissimilar…  mmmm eau de gingerbread latte.  Who knew that the arms on the waiting room chairs were not level?  And how fortunate that it nose dived down my leg and into my handbag!  So my first introduction to her in person was an interesting one…  She’s a lovely lady.  All of the specialist nurses I have come across recently, be it PD, IBD or cardiac, are exceptional people and do an invaluable job.  She assessed me and decided that my medication is not working well enough, especially as I’m going back to work.  So the obvious thing to do is to increase my medication.  However, I appear to be highly susceptible to side effects so we have to be cautious… it’s a delicate balance between getting an effective dose and minimising side effects.  I wouldn’t mind if I got the good ones… So she has increased the frequency of the doses but the doses remain the same.  I still have the option of adding in a bedtime dose if I don’t turn into a crazy gambling, binge-eating, sex addict… Did I say turn into…?!  She’s also chasing my neuro rehab referral as she feels I will benefit from having that sooner rather than later.  Sounds exhausting…

Yesterday I was completing some paperwork with the help of Kitty.  Her handwriting is probably easier to read than mine.  I had to measure the impact that Parkinson’s has on every tiny aspect of my life.  It’s a great exercise in grounding and forces you to accept all of your limitations.  I hadn’t realised just how much my life has changed, particularly this year, until it was all there in front of me in black and white.  But equally, it showed what I can still do.  Don’t write me off yet people!  There’s life in the old dog yet…  The form is to get help and support for going back to work.  I have a lot of that already but you never say no to a little bit more.  Anything that helps to keep me going for a bit longer is welcome.  It did make me doubt my self-worth for a moment.  But that was just a momentary blip… I hope x

My biggest panic this weekend has been whether I can still get into my uniform…???  A sedentary life of cake and coffee and lovely lunches has had an obvious effect.  I’m refusing to try it on, just in case it doesn’t actually fit…  God knows what I plan to do on Wednesday if I can’t actually get it on?!  It will be an interesting look…  At least I have my new badge…  Help!  It’s all getting a little bit real…

Sam has done a full week at school!! I can’t tell you what a relief it is when he walks out of the door each morning. Obviously there’s still the chance of a phone call telling me he has TB or streptococcus A or hemiplegia (I’m not even joking!)…. He has come home with a bloody knee and is ranting about kids but that’s a whole week done! We have avoided another attendance letter which is a major victory. He’s actually been happy this week, good report, karate grading coming up and full attendance. Yay! It’s the little things that matter. If my boy is happy that’s a major achievement and a big win for us.

Joseph has come home with a form and letter about work experience. He wants to go to a book shop because he thinks he’ll be able to sit and read for a week. I think the point of work experience has been lost on him! We only have until the middle of January to sort something out. Great. Good luck to anyone who agrees to take him on!

I was worried this morning that after overdoing it yesterday I would feel crappy today, but surprisingly I feel okay. This bodes well for going back to work and having consecutive shifts. This pleases me because I’m starting to get really worried about going back and exactly what I will be able to manage to do. I feel like I’m going to have my every move scrutinised… Feel free to scrutinise my tremor and my dead leg that drags when my drugs wear off or I’m tired, my inability to write or string a sentence together, or the moments when my dodgy brain decides to switch off or shut down completely. Scrutinise away. I can’t deny any of it because it will happen and I can’t hide it. But I’m still me. Please don’t treat me differently… I couldn’t cope with that…

On a happier note, I’ve had a lovely afternoon with an old friend. So nice to catch up, and as ever, her sage words of wisdom will form part of my daily mantra. She always knows what to say, and it always makes sense!! Lovely way to spend an afternoon. And my dad is still doing well. One week post-op and he’s out walking! Happy days.

I finally gave in and got a little bit festive. The tree is up. Well both trees are up. And lights and a few decorations. I’m not going all out this year but it looks a little bit more Christmassy around here. I even made my own bauble wreath for the front door. It’s far from perfect but I’m pretty impressed with how it turned out in the end… I made that! I’ve moved the cats upstairs onto the landing in a vain attempt to keep them away from the temptation that is a Christmas tree. A liberal sprinkling of cat nip on all their stuff and I’m winning so far… I am, however, regretting the new position of the cat tree as Olive has taken to peering around the top of our bedroom door frame… ideal!

I’ve done too much today. I knew I had. But I wanted to get it all done and finished so I could concentrate on other stuff. I am very much regretting that decision now. Hindsight is a wonderful thing. I have to remember I’m not the person I used to be. It’s hard to accept that you have limitations, particularly when you haven’t done anything especially difficult or strenuous. I get so frustrated that everything is an effort. But I do it anyway. Do or do not, there is no try! Little bit of Yoda there… the consequence of being surrounded by nerdy geeks or geeky nerds. I’m feeling crap now, completely shut down, so it will be interesting to see how I feel tomorrow. I’m on a countdown to going back to work now so whenever something throws me off kilter, the panic and anxiety about how I will cope increases… I have to be able to do it. There is no try…

Sam was so excited tonight that Joseph has come home from school with three brand new, pristine revision guides. He’s desperate to get his hands on them and is bugging Joe incessantly to let him borrow them. Joe is a little less joyful about them and more so what they represent, but equally is not keen for Sam to use them. He’s more concerned that I’ve got him a bigger Rubik’s cube for Christmas… priorities?!

Today is a happy day, for all sorts of reasons. My dad is doing brilliantly after his surgery. His recovery is so different and so much better than last time. It’s such a relief to seeing him looking so well. He has a long road ahead of him but we’re over the first hurdle now. It’s so hard not living close to my family. I can speak to people and get regular updates but it’s not the same as seeing for yourself. I will try to get up to see him, and the rest of my family, again soon. I hate flying visits… especially so close to Christmas.

Tom passed his driving test today!!!! I’m so pleased, for him personally, more than anything else. Thanks to an overdose of Rescue Remedy and all of the hard work, commitment and compassion Martin has shown him, he drove how we all knew he could. Martin has been amazingly patient with him and we would never have got to this point without him. So if anyone is looking for a driving instructor, I can’t recommend him highly enough! Tom needed this today. He’s had a crappy year with his own health and then dealing with that and starting uni and everything else we’ve been through as a family. I can only applaud his persistence and dedication. I’m very proud of him.

Joe and Sam brought home reports today. Joe is on target to get all A’s at GCSE. He is top in RE which isn’t funny per se but is a family joke. All my boys get awards in RE! No idea why or how but they do. He’s been selected to do a Computer Science master class too. Sam is just brilliant all round and has to be commended for the effort he puts into every single subject when just being at school is a huge challenge for him. A challenge which is becoming harder to overcome as he gets older, but it’s a battle that we will fight together, and I know he can win. He was told at Karate tonight that he will be grading next week. I am so grateful that he has something he loves and that he can excel at. Well done boys. For coping with everything life throws at you and continuing to achieve great things when others in your position would have crumbled long ago. I am so proud to be your mum.

Two of the Joeys took me out today. We educated Cat about garden centre etiquette and entertained ourselves with hats and gorillas and reindeer and ice skating! A typical Joey outing with lots of chat and laughter and funny looks from the garden centre regulars. I needed that today. I’m always on a bit of a downer when I come back after visiting ‘home’. But now I’m inspired and determined to embrace Christmas and the peacocks and long-legged owls that apparently come with it. Thank you ladies, you have worked your magic again xx