Someone asked me recently what Parkinson’s feels like because I ‘look okay’ so ‘it can’t be that bad’…?!?! Before I address that huge misconception, it is important to acknowledge that everyone experiences Parkinson’s differently. Different symptoms, different progression and severity of symptoms. So, what does it feel like? There is no simple answer. For me, Parkinson’s is:

• Fear. The story of my life has been rewritten with an ending I would never choose but now have to face. That’s bloody scary!
• Pain. Oh so much pain. Chronic, interminable pain. People generally don’t associate pain with Parkinson’s but I’m unhappy to confirm it features heavily… and is difficult to treat because of its very nature. You can take Ibuprofen, Mrs Gill. Ha!
• Anxiety. Caused by not being enough, by the loss of skills I once possessed. Imagine willing your body to do things you were once able to easily do but now cannot…
• Unpredictable. Imagine waking up every day and not knowing how well your body is going to function that day?! Some days you can do everything you want/need to do easily. Other days you can barely get out of bed. Most days fall somewhere in between.
• Restrictive. Each day you only get a short window of time where you can function. You have to plan every activity you want to do and decide which activities won’t get done because you can’t fit them in to your window. Especially as slowness and stiffness mean you have to allow more time for each individual activity anyway.
• Exhausting. Pain, restless legs, dystonia and LPR keep me awake and wake me up. Fatigue is chronic and insomnia is persistently debilitating.
• Stressful. Trying to do enough in the time you have. Trying desperately not to be a burden.
• Medication. I take medication to keep me moving, to relieve the stiffness and rigidity, to suppress the tremor, to help me sleep, to keep my gut functioning, to alleviate pain, to maintain my speaking voice and to lift my mood. There is no future for me now without medication. And when you are aware that each drug you take will only be effective for a finite amount of time, that prospect is frightening. And remembering to take it in the first place, don’t even go there!
• Appointments. I have so many appointments. Professors and specialists and therapists of all kinds now know me on sight and remember my particular eccentricities without referring back to my notes. This team is battling with me to keep me moving as well as I can for as long as I can. My gratitude to them and their expertise is immeasurable.
• Exercise. The greatest weapon I have in this fight is exercise. Exercise is Parkinson’s kryptonite!! It’s a shame I’m so inherently bad at it!! And currently disabled further by a torn medial ligament. But I don’t let that stop me. I have adapted Parkinson’s Warrior exercises to do and the addition of a dog to the household means that I’m out walking for at least an hour a day.
• Guilt. My husband is losing a wife. My boys, a mum. My mum, a daughter. Slowly. The person I was will slip away. Some parts disappearing quite quickly, others slipping away virtually unnoticed over a number of years, until one day you realise they’ve gone.. In that respect, it is such a cruel disease. But how can I not feel guilty?
• Family. Conversely, my family keep me going. They are the reason I get up every morning and throw myself into every challenge I face. I can see how it would be so easy to give up if you didn’t have anything or anyone to fight for.
• Friends. They rock!! Without friends I would be lost. They mock me and make me laugh. Their love and support is steadfast and unwavering. I don’t know how anyone does this without amazing friends. The isolation would be crippling.
• Positivity. My journey to date has taught me to look for the positives in every difficult situation, the rainbows in fact! You can put a positive spin on the bleakest of days. And isn’t it better to look for those rainbows rather than getting stuck under those dark clouds?
• Humour. Bit perverse talking about humour and Parkinson’s in the same sentence perhaps??!! But being able to laugh at yourself and see the funny side is so important in maintaining your mental health and well-being on this journey. And let’s face it, a lot of funny stuff happens!! My biggest regret is losing my smile… but that in itself has a funny side! My new badge…
• 
• Judgement. People look at you and make assumptions based on what they can see. Parkinson’s is the proverbial iceberg with so much more going on under the water than you can ever see above the surface. Following a particularly traumatic experience I had for this exact reason, I implore anyone who wants to know anything, to ask me! I’m a pretty open book. And I’d rather explain something myself than have people making assumptions based on how they think I look. Rant over!!
• Discrimination. I am necessarily restricted in my job role and in some aspects of my life in general. I am grateful for that on the whole. It is designed to keep everyone safe. But I do feel that these restrictions lead to me being automatically overlooked at times. If you are never given a chance, then how can you achieve great things? Maybe it’s just my persecution complex at play? Maybe my expectations of myself and others are wholly unrealistic?? Nonetheless, it hurts.
• Opportunity. To get the most out of each moment, day, week, month or year. Don’t waste a second. Do the things you’ve always wanted to do, while you can. Your clock is ticking faster now, your life is more unpredictable so do those things that make you happy. Life has presented you with this amazing opportunity. You are lucky. You know the ending to your story. It’s up to you how you write the rest of it.
• Lucky. I’m so lucky that I only have Parkinson’s! Yeah, people still say that to me… but I do feel lucky. Lucky that I have amazing support. Lucky that I can still do most of the things I want to do. So yeah, I get it, it could’ve been worse.

I had other stuff I wanted to add to this post but my window of opportunity has closed for today so I’ll simply end with a gratuitous Obi photo and save my wittering for another day x

I had a conversation with a friend about the different personas we all possess and employ depending upon the specific situation we find ourselves in and the people who are relevant to that situation. The ‘Clare’ my family knows is different to the ‘Clare’ my colleagues know and she is different again to the ‘Clare’ my close friends experience, and again to the ‘Clare’ I present to strangers. None of these personas is a lie, more they are different degrees of the real me. I give as much of myself as I believe the circumstances warrant. And then, no matter which ‘Clare’ I am, Gilly or Riss or Mrs Gill or Mum, I don a mask. That mask allows me to function. It allows everyone else to forget. It stops the questions and misgivings and doubt. No one gets to see me without that mask. It slips sometimes, and you might get a glimpse of the real me, but I’m quick to replace it. And the reason I wear it is to spare everyone the concern and worry which inevitably accompanies knowing the real me. I prefer people to believe I’m fine, to forget what it means to have Parkinson’s. If I can just pull it off for a while longer… the act, not the mask! That remains firmly in place. It’s not even a very good mask… you’d think I’d have been a bit more particular when choosing it?! But it is most definitely a reflection of me… The cruelty of this disease is the effect it has on everyone around you. They see you change. They lose the person they knew. I can’t imagine how devastating that must be…

At every single Parkinson’s appointment, they ask you whether you have had any falls. Up to now I have been able to confirm that falls do not yet feature in my clinical picture. Well until today. My first fall. I’m rather proud that I did not simply crumple to the floor. No… naturally it was far more spectacular than that. A perfect swan dive before sensationally face-planting the floor. Now on its own this accounts for an impressive first fall but you need to put it into context. I was out walking the dog. Of course I was! And naturally I was walking through inches of very wet mud. Yep. Miles from home. I go down like the proverbial ton of bricks. In the mud. And then miraculously I got back up. And carried on walking. My swamp creature persona elicited some puzzled looks from passing dog walkers but we finished our walk without further incident. I’m feeling it now though. I could blame it on the inclement environmental factors. I could blame it on inherent clumsiness. I could blame it on the way I fastened my walking boots. But deep down I know that if I didn’t have Parkinson’s, I wouldn’t have fallen over. It was a must-see moment though! I thought exercise was supposed to make you feel better?? To date, it has made my symptoms worse, much worse… It is possible I have the balance all wrong, in that I’m doing too much, not that I’m falling! But that too. Time will tell. Sightings of strange swamp creatures wandering around Branston can mostly be attributed to me!

I was in the chilled food aisle of the supermarket, looking disdainfully at the empty space on the shelf where the sausage rolls, which form an essential element of my youngest’s very restricted staple diet, should have been… As I stared hopefully at the rest of the shelf, willing a lonely pack of sausage rolls to appear among the sad-looking mini scotch eggs and dejected Melton Mobray pork pies, something caught my eye…  I was standing adjacent to an elderly couple, the silver haired woman in front and very much in control of the shopping trip in hand, the slouched gentleman behind her, standing with his hands resolutely shoved into his trouser pockets, listening to the woman’s determined preamble about what they would be eating that evening.  I wasn’t listening.  The lack of sausage rolls had annoyed me.  But then I noticed it.  The tremor in the gentleman’s hand.  Even with it’s position in his trouser pocket, it was evident.  I know I stared for a moment too long.  A year ago I wouldn’t have even noticed it.  I wanted to say something or hug him or something….  It’s like being a member of a secret society.  Whatever you do, don’t mention the tremor!  Don’t draw attention to it.  Sad times…

We got a dog.  After all of the uncertainty and wondering whether it was a good idea…  Obi is now very much a member of our family.  He is also very much my dog.  Six weeks down the line and I don’t regret it one bit.  He is such a sweet-natured little dog.  Any dog was going to require changes and readjustments within our little family unit.  There have been plenty of those, mostly from me and the cats!  And now he has slotted in like he’s always been here.  He gets me out of the house, he motivates me to move when my defective body has other ideas, he lifts my mood, makes me laugh, keeps me warm and he loves me unconditionally.  I didn’t think there was anything missing from my life, but this little dog definitely completes me.

In terms of me and how having a young dog has helped/affected me…  Wholeheartedly it has been a change for the better.  Obi has been everything I wanted him to be, and needed him to be.  He gets me out of bed in the morning.  He gives me a reason to want to function.  He stops me from sitting and moping.  He gets me out of the house every single day, walking, getting fresh air and talking to people.  He forces me to face some of my demons.  The positives by far outweigh the one or two negatives… I do wonder whether some days I now do too much because I have to.  If I don’t walk him, no-one else will.  There are evenings when I have worked for 8 hours and come home and walked him for an hour.  Those evenings I am so stiff and in so much pain, I can barely walk.  But my symptoms in general are worsening again so I can’t categorically blame having a dog.  It could be the weather.  It could be something totally unrelated to Parkinson’s… although I doubt it.  I love this dog.  I love spending time with him.  Everyone should have a dog.

I’m back on the rollercoaster that is the Parkinson’s journey.  I’ve had a good few months sitting pretty at the top of the loop but the descent has slowly begun again.  Months of the right combination and dosage of drugs and enjoying the freedom to live the relatively normal life that afforded me.  I had reached a point where people had forgotten that I have Parkinson’s.  That’s a fabulous place to be.  A rainbow, right there! But slowly, imperceptibly, those symptoms have worsened until one day you wake up and realise you are slipping behind that mask again.  I had a very dark moment yesterday where I succumbed to the despair that sometimes, inevitably overtakes you.  A friend recognised that I was struggling and messaged me until I was ready to accept that shedding a few tears and accepting your current limitations is not a sign of weakness.  I am eternally grateful for the friends I am fortunate to be able to surround myself with, who, without me having to say anything, instinctively know when I need them to pick me back up, when I’ve slipped just a little bit.  So I shed a few tears and picked myself up and I’m ready to face the world again. I’m at a point in this journey where blips are necessary but temporary.  I have the tools to climb back up and face those demons and prove to the world that I’m not ready for the scrapheap just yet.  I will ring my PD nurse tomorrow and she will talk some sense to me.   I’m just trying so hard to accept that I am good enough…

Oh my lord, have you ever tried to think of a word and simply cannot grasp it? And the more you try, the more frustrated you get until it becomes a physical sensation of annoyance?! You know what letter it starts with and who used it, and the context it was used in, even the sentence it was used in, but you simply cannot bring it to mind. Then you have other words dominating your thought processes. All I can think of now is Joe’s word of the week, which this week, sadly, is ‘gonads’ and is categorically not the word I’m trying to think of… although Joe has managed to slip it into most conversations, which is great when his grandma is staying with us… ‘Why is Joseph talking about his scrotum all the time??’… He’s not, not really, he’s talking about flower genitalia… Oh my lord! This is not helping my word finding either… but just like that, it has come to me. Intimidating! I can finish my sentence now. Caroline, my PD specialist SLT says my word finding will get worse, so if you hear me slipping random gonads into the conversation, you know why!!!

We’re getting a puppy! I can say it out loud now that everything is confirmed and definite. He arrives next week, Thursday evening to be precise. I’m so excited. I can’t tell you how happy this makes me! Mark and I had talked about it for a while, me more than him probably…. ok so I bombarded him daily with pictures of puppies for several weeks until he gave in to my demands, but there was a discussion in there somewhere, and now, deep down, very, very, deep down, he’s actually just as excited as me. That’s what I’m telling myself anyway… The puppy is for me. My therapy and motivation. He will force me to move on those days I don’t want to. Movement is good for people like me. Of course I know that. The puppy will help me on days when knowing that isn’t enough. But quite simply, he will be a lovely addition to the family, and I’m secretly hoping that Sam will take to him just a little bit because he won’t be intimidated by him like he is by the cats… maybe?!

The process of finding our puppy has been a long one. I wanted to rescue a dog. Try finding somewhere that will allow you to rescue a dog when both responsible adults in the household work and you already have four cats. It’s tricky! In fact, as I learned after many hours of research, it’s nigh on impossible. And of course, on the flip side of that, try finding a rescue dog who can be rehomed with 4 cats without already having developed a dislike for cats due to previous experiences, or they need to be rehomed as the only pet in the household because of ongoing issues they may have. It was never going to work. Until we found Obi. There’s no ‘we’ in this scenario, I found him after hours of determined searching. Obi’s mum is a stray who delivered 10 puppies in a rescue centre on 13th June. Ideal! The catch? She was rescued in Cyprus… Not quite ideal! The last four weeks has been a stressful whirlwind of trying to organise the necessary home check, being let down 4 times, having prepped the boys, tidied the house and waited for hours without so much as a ‘sorry I’m not coming’ from the home checker. The process has stressed Sam who was in a permanent state of, ‘Who needs 5 pets, it’s bloody ridiculous’ ranting. I felt as though we were jinxed. The lovely lady in Cyprus was so helpful but limited to what she could do. I watched the number of puppies dwindle with each missed opportunity for a home check, eight, then six, then three, until there were only two left on the day we had our check done. I had even started to look for a puppy closer to home but clearly unscrupulous breeders and obvious puppy farms were making me sad, as much as the photos of tattooed people in vests with fags hanging out of their mouths, holding up their puppies like a terrible scene from the Lion King and their innate inability to spell even the simplest words made me cross and sad. I mean, ‘Shit Sue’ did make me giggle but come on! It did not make me want to buy their puppy. Fortunately, two days after our home check was completed, we were approved and given the choice of the two remaining puppies. So this is Obi…

My little Heinz 57 with a definite smattering of Beagle thrown in for good measure. There is a little bit of natural trepidation because we haven’t actually met him in the flesh and I worry that he won’t like us but how could you not love him? When we chose him, Sam panicked about the last remaining puppy and what would happen to him. Mark then said the other puppy looked sad. So I had a moment of doubt and a pang of guilt over choosing one pup over the other but the decision is made and Obi will be coming home to us on Thursday evening. Collecting him at 5pm from Manchester airport will be fun… I apologise now, to anyone I’m working with on Thursday because I will undoubtedly be a basket case all day…

At this point I have to give a big shout out to June and Michael who run Cyprus Pride House rescue and rehome cats and dogs all over the EU because the alternative in Cyprus is unthinkable. I know people will say I’m just adding to the problem of the number of dogs that already need rehoming in this country, by bringing a dog in from abroad but all I can say is I tried, really tried… it’s not as simple as going to your nearest rescue centre and bringing a needy dog home. Believe me… https://cypruspridehouse.org/

I’ve been on Annual Leave this week. I like a week of me time when the kids go back to school. Selfish or sensible? I don’t care. It helps with my self-preservation and it’s good to recharge your batteries every now and again. My mum has been staying with us all week because I don’t see enough of her. She prefaced her visit with, ‘Let me know if I upset you, won’t you? I seem to be upsetting everyone and don’t know I’m doing it’… Happy days! Fortunately she finds herself as hilarious as I find myself so we’ve had plenty of funny moments. The week has been a blur of walking, shopping, eating out, Scrabble, housework, puppy preparation, charity shops, good deeds, and getting stuff done. A lovely week. I’ll be sad when she leaves this afternoon. It’s been nice to have someone on my crazy wavelength to talk to all week, doing the same stuff as I like to do. It’s difficult to get that in a house of men.

In other news… Joseph received the second highest number of Awards given out on Awards Evening. Sadly he did not get an opportunity to thank Karen, and despite all of his awards and acknowledgement of his awesomeness, all he was interested in was the WHSmith gift card… I am waiting for my referrals to come through for all of my additional Parkinson’s and non-Parkinson’s related issues. I can’t imagine I’ll be sorted this side of Christmas. Luckily I’m generally feeling good although the torn ligament is impacting upon my walking ability. And I’m getting a puppy this week?!

So I’m sitting in the waiting room of my GP surgery with Joe.  We live in a very multi-cultural area, so people-watching at the doctors is usually worthwhile.  No one speaks English.  This morning the patient demographic is overwhelmingly Asian, with a smattering of Eastern European…  Joe has chosen this morning to embody a Prophet, and is sitting beside me as though he is in prayer, and whenever anyone enters the waiting room, he bows and says either, ‘Blood of Christ!’, or ‘Body of Christ!’ and then whips his Rubik’s cube back out as though this is perfectly normal behaviour… This is our normal!  I have no idea what the poor people waiting thought… the bemused expressions said it all.  The GP is running late, a technical issue with the computers is slowing things down so he’s had to revert to good, old-fashioned handwriting everything.  This gives me plenty of time for reflection… reflection on a really good week!  I have so much to be happy about and so much to be grateful for…  I’m getting so good at spotting those rainbows.  Like this morning, for example, Joe ended up being 10 minutes late for school.  I may have had a teeny, tiny argument with the school receptionist when she implied that he had fabricated his appointment to excuse his lateness…  She messed with the wrong parent.  However, that aside, Joe is better, the treatment has worked… rainbow right there!

On Monday, three of my most favourite people invited themselves round for brunch, bringing with them the entire contents of two LIDL bakeries.  I’m not even joking.  Obscene amounts of pastries were just the start.  Karen’s menopause towel made an appearance.  We all had to touch it and put it round our necks, accompanied by a chorus of, ‘Ooh yes, that’s clever, it is cold, isn’t it?’… The anticipated craft activity sat untouched and ignored in the corner of the room as we gossiped and ate and laughed, OMG did we laugh?!  Cat waiting for a stream of hot coffee to shoot out of the spout of the cafetiere apparently by some force unknown, or magic, was the source of much amusement.  Tom had come back from the barber’s at that precise moment and the disgusted look and ‘Are you lot on something?’ comment said it all… He quickly disappeared, with armfuls of pastries, to the safety of his bedroom.  My tremor is worse at the moment but it doesn’t really trouble me, until I tried to carry a full cafetiere and a cat-shaped t-pot at the same time, the cat’s head wobbling worryingly and making the sound of china rattling.  Did my lovely friends jump up to help me to avert disaster??? No, they sat laughing… a lot, holding their outstretched arms in a pathetic, unhelpful gesture of helpfulness and complaining about the annoying china rattling noise!!  Fortunately, the tea and coffee made it to the table without incident, and the gossiping and hilarity continued well into the afternoon.  Who knew Mrs Shenton was a closet naturist??  Plans for future Puppy parties and old alcoholic sleepovers loosely made… a wonderful day full of many, many rainbows. My friends give me so much more than friendship.

I had rehab again yesterday.  A shift at work, spattered with moments of hilarity, cut short to go and see the lovely Fiona and get the verdict on whether my physio ban can be lifted.  Apparently not…  I have somehow managed to tear the medial ligament in my ankle… or at least that’s what Fiona thinks I’ve done.  She reassuringly told me she didn’t think I’d broken anything…  After lots of questioning and poking my ankle to see what makes me shout, she decided I need referring to get it fixed before I can progress to jumping Parkinson’s physio.  I can’t even continue the standing exercises and have in fact been demoted to chair exercises. Echoes of ‘Elderly Frail’ ringing in my ears…  Fiona felt it necessary to scrawl, ‘NO LEGS!’ all over my exercise sheets in case I was uncharacteristically overcome with a desire to start jumping about.  She should know me well enough by now! She said I shouldn’t do anything that hurts and at work I should sit down every 15 minutes to rest my ankle… yeah right! I have become one of those familiar faces at Rehab now, people recognise me and shout ‘Hello’, which is nice, isn’t it?  Another exclusive group I’m part of…  But, I can still exercise and I’m being referred and will be fixed… rainbows!

I had my hair cut this morning.  Wendy gave me the full old lady treatment, despite the salon being full of other old ladies waiting for attention.  I asked her to just make it look as though I’d had a haircut when she questioned my requirements for today’s visit.  She asked whether I wanted it shorter, and then found herself far more hilarious than was necessary when she commented that she can’t make it longer… Mission accomplished!  Instead of my usual 2 minute blast with the hairdryer, I had a full blow dry so the resultant bouffant hairdo is something I will never replicate.  Whilst Wendy pimped my hair in the general style of your typical octogenarian, I had an enjoyable half hour listening to the discussion about a dog that had gone past the window and how it was most definitely an Irish Wolfhound, Wendy’s plans to breed from her mini Schnauzer and Mary’s forthcoming trip to India for her son’s wedding now that she’s been given the all-clear to travel by her doctor.  I love how normal it all is.

It’s the school Awards Evening next week, recognising the achievements of the students over the previous year.  Joe is getting three awards!  The Achievement Award for Computing (no surprises there!), the Outstanding Progress Award for Year 10 and the Platinum Award 2019.  I’m so bloody proud of this kid!  He is being recognised for the amazing human being he is proving to be.  And to top it off, he is polite, funny and just an all-round likable kid.  It’s difficult being the piggy in the middle but I have a funny feeling Joe isn’t going to let his brothers overshadow him…  Keep being you Joe, you are doing great things despite hurdles that would stop other kids your age in their tracks… so, so proud!!

 

There are so many different types of boobs. Mine are less than perfectly perky after three pregnancies, breastfeeding three babies and massively yoyoing weight, from surprisingly skinny to frankly obese. All these things have taken their toll until failing The Pencil Test is inevitable… never mind a pencil, I could probably hold the pencil case and a bag of groceries under mine…. So why the boob obsession?? I love being braless, no matter what The Pencil Test indicates. I retain that bliss for the confines and privacy of my own home, you will no doubt be glad to hear! I have, however, developed a habit of late whereby I wedge whatever top I am wearing under my boobs when bra free… in effect, a boob wedgie! I did actually Google that in vain hope that perhaps I’m not the only person on the planet who does this, but my search elicited no results that I’m willing to share… I don’t know, it’s just really comfy… I get that the whole fat, middle aged, braless woman with her top wedged under her unconfined bosom is probably not that appealing, nor is it going to institute some sort of growing trend but picture this you must…. I’m wearing grey pyjamas and looking not dissimilar to Waynetta Slob, only I have my pyjama top wedged under my sagging bosom. Yep, it’s a good look. I’m also wearing my faithful slippers Mark II, the sparkly version, to complete the look. The day in question was the first day of the new school term. Naturally I was up early, ironing every item of school uniform I had bought my boys who had chosen to screw them up into little balls and throw them at the wardrobe, rather than hang them up neatly as requested. Remind me why I had kids???? So to add to the look, I was stressed and hot. When my son’s friends appeared at the door to call for my boys, I didn’t think twice about opening the door and having a conversation with one of them. Mark reckons I’ve traumatised the kid but I don’t think he would even have noticed? Would he? Yep that happened… But I cannot retire the boob wedgie… Mark commented that he’s a lucky man… His sarcasm was not lost on me but just wait until I’ve gone viral!! Middle-aged women across the nation will be thanking me for recognising and addressing this important issue. I could design a range of clothing with extra material incorporated specifically to accommodate a boob wedgie without compromising the look of the garment! Maybe not… From my extensive research, people-watching in various eateries in Staffordshire and Derbyshire, there are plenty of other less than perfectly perky bosoms out there who could benefit!

On a more sensible note, I’ve been to rehab today. It always makes me want to bust into song, a la Amy Winehouse, whenever I say that…. Today I was assessed by Caroline for speech, swallowing and word finding issues. You see, Parkinson’s really is the gift that keeps on giving… any source of movement that can slow down in your body can be affected, and so here we are! I have to say that I feel very fortunate to have all of this support available to me without having to fight for it. She recorded me saying different things and from the resultant sound waves, told me my speech is typically Parkinson’s! Part of me was thrilled because whenever I get referred to another specialism I always feel a bit of a fraud looking round the waiting room, and I half expect them to ask me what I’m doing there… but no, I’m typically Parkinson’s. Caroline thinks I have LPR caused by the whole Parkinson’s thing so I have a referral to the Voice Clinic and a date with endoscopy to look forward to… I have an app to remind me to swallow every two minutes – not at all annoying!! And strategies to help with volume and word recall. If I wasn’t annoying before… 🙄🙄😳😳😂😂😂. The rainbow in all of this is that it’s been picked up early and there are strategies and treatments that can help. The two medical students sitting in my assessment had quite an education today! ‘We’ve never met anyone like you Mrs Gill’… that’s a compliment, right??!! Bring on the swallowing and drooling assessment next time!! Rock and roll!!

Today I pegged my washing out while it was raining.  Mark came out, hopping from foot to foot, and acting as though I was a total crazy person, offering to bring my wet washing back indoors, faster than I could peg it out.  Despite his look of utter bewilderment, I declined his offer and continued my apparent folly, as the rain got steadily heavier.  But I knew it was only a shower.  I could see the sun and azure blue sky at the furthest edge of the turbulent black cloud which hovered stubbornly over our house, giving the merest hint of that illusive rainbow. But a hint is enough to spur you on to better things.  Plus, the washing wasn’t mine.  It was 12 brand new, as yet unworn, white, school shirts.  A few spots of rain wouldn’t hurt them, in fact it would probably help with the necessary softening process of the cardboard-like pristine white shirts, to something akin to a greying dish cloth which is apparently more acceptable to my boys and gives them the dishevelled appearance of orphans or the homeless.  Joe popped his head out to tell me it was raining, like the massive drops of water bouncing off every part of me wasn’t enough of a clue… but I was waiting for my rainbow.  Life is all about the rainbows…  My new mantra is to look for the good in everything… Sometimes it is difficult, nigh on impossible, but I see it as a challenge!  Life is full of rainbows if you take the time to look for them.

It takes a period of feeling good, to recognise just how good you feel and equally how bad you felt before.  I feel bloody brilliant at the moment!  The drugs are finally doing what they should and the symptoms/side effects I am left with I can see are nothing more than minor inconveniences.  They don’t define me but they do define the way I live my life.  It has taken me a long time to accept that, but now that I have,  I can still appreciate that life is good.  It’s all a process of recognition and adaptation.  Nothing is impossible (well not much!), you just have to be prepared to do it in a different or slower way.  And that’s OK!!  Get me, being all positive…  I’m not useless, in fact recently I have been appreciated for being the exact opposite of that… My usefulness was recognised and my strengths appreciated.  Who knew I’d ever be able to recognise that in myself and in the way other people view me?!  Rainbows…

Lots of good stuff is happening…  The boys are going back to school this week.  Praise the lord!!!  I mean, I love spending time with them but you can have too much of a good thing…  I have been driven to distraction by Japanese-speaking, meme-quoting, star-jumping, card-cheating teenagers… but they do make me laugh!  Proper laughs, not those polite noises you make when someone thinks they are being funny but really they’re not… at all…  They are the kind of funny that still has you randomly chuckling, hours, or even days, later.  I’m going to miss that as they throw themselves wholeheartedly into their year 10 and year 11 studies (who am I kidding???)…  I bought Sam a new Maths set as I do every September, only for him to pull four protractors and many, many set squares out of his desk drawer, mumbling ‘What do I need those for, I haven’t used these yet?’…  So now I’m wondering whether it’s just Sam’s refusal to conform to any sort of norm, or maths has changed a lot since my day if protractors and set squares are redundantly gathering dust in teenager’s bedrooms everywhere…  I suspect the former…  so in the spirit of positivity I cheerfully pointed out that this set is green!  I can’t even begin to describe the look of utter disdain on his face as he begrudgingly took the new, green maths set from me… rainbows???  Joe on the other hand, is excited to see the level of facial hair growth amongst his closest friends.  It seems the ability to grow the six hairs which have sprouted on your upper lip and chin gives you some sort of increased status in the playground.  There is a boy in Joe’s form with a full beard so he has a long way to go before he can compete.  Bring on school and the comforting routine which naturally follows and the potential of having the house entirely to myself if I have a weekday off work.  Rainbows!

I have a full diary of social events and activities with all of my favourite people.  Lunches, brunches, breakfasts and trips out.  The prospect fills me with joy.  Spending quality time with lovely, like-minded people is so restorative and beneficial to my physical and emotional wellbeing.  And my mum is coming to stay in a few weeks.  We get to spend time together without the boys or anyone else making demands on our time.  So I’m selfishly planning things which will appeal to us, and only us.  Rainbows, rainbows, rainbows!  I also have some exciting news which I can’t share yet…  Not until some necessary details are confirmed…  I don’t even apologise for the vague teaser but believe me, it’s worth the wait…  for me at least!

So despite work being busier than ever, and the problem with my foot having evolved into a problem with my leg (sorry Fiona!), I am in a good place, a very, very good place! It’s so long since I’ve been here, it’s making me a little bit giddy, but I’m very happy to stay.  A place full of rainbows…

I know I have a tendency to go on about stuff… Why say something in 5 words when you can say it in 250?? Anyway, I’ve just finished a shift at work and it’s a glorious, hot, sunny Bank Holiday so I’m sitting in the garden, showered and braless (absolute bliss!) with a cold cider and a washing up bowl of cold water to stick my feet in (don’t knock it until you’ve tried it!). Sam was concerned for my welfare when I was in the shower as he ‘heard an almighty thud’ and thought I’d fallen. If me dropping something is described as an almighty thud, I dread to think how he would describe the considerably louder noise of me actually falling over!! He quickly disappeared when he determined that his concern was unwarranted on this occasion, back to his room, lost to a world of online gaming and YouTube videos about politics… just like his brothers (minus the politics bit!). Mark is keeping me furnished with cold drinks and has dragged the hose over so I can replenish the cold water in my washing up bowl every time it warms up to vaguely tepid in the blistering heat without even leaving my seat. But I sit here alone contemplating all that is wrong in the world, with the accompanying sounds of Nick and Sylvia sweeping next door. I never understand how they can find so much sweeping to do… Or why?? Just, why…?!!

So here I am, pondering Corsodyl toothpaste… I went to the dentist last week so that he could clean under my crowns. A grim procedure and I don’t recommend ‘manning up’ and having it done without anaesthetic like I did… I have 3 crowns which have been a permanent fixture in my mouth since I was 17 and took the savage Yorkshire terrier we owned at the time, to the very hunky (do people even say ‘hunky’ anymore??!) Australian vet, because the stupid dog had eaten something she shouldn’t and was vomiting bile… Anyway… when I got into the room and and dumped the puking hound on the table, I then apparently fainted, not once, not twice, but three times, smashing my face on the table every single time (because once isn’t nearly enough!)… hence the three broken teeth and massive egg on my forehead. Said hunky vet apparently then dragged me out of the surgery and propped me up on the steps outside with a cup of water… I sense you are all picturing the scene at this point so feel it is probably worth pointing out that I was very skinny at 17 and the scene would look very different if the same thing happened today! Some time later a snarling, man-hating canine was lead gingerly outside by the veterinary nurse who told me that she was fine but that I might want to get my face looked at… So here we are, a few years (decades!) later, and I still have the same crowns that were put in after that fateful day. My dentist wants to remove them and try to replace them but there may not be enough tooth left to do so, but I’m very much an if it’s not broken, why fix it kinda gal!! Hence the grim cleaning procedure last week… Blimey all that and I haven’t even got to the toothpaste yet!! My dentist is quite clearly a sadist and seems to relish in offering only the most painful treatment options hence my ‘manning up’ and stupidly refusing the local anaesthetic. After all that, he recommended that I use Corsodyl toothpaste and mouthwash to help to maintain my gum health. Before I left, I had to endure a video on teeth brushing, because quite clearly I’m an idiot… It’s only toothpaste, I thought… Have you ever tasted Corsodyl toothpaste?? From the outset, it’s a delightful shade of brown. Yep, brown toothpaste. That should be warning enough really. I pondered for a moment, wondering whether there really was any difference between that and my trusty Oral B?! Obviously there was or he wouldn’t have told me to use it, would he?? So I put a pea sized amount on my toothbrush, reassured by the fact that my senses of taste and smell are almost non existent since my Parkinson’s diagnosis. OMG!!! This stuff is disgusting. I can’t even begin to explain the depth of disgustingness it reaches… For a start, it is salty! Vile-tasting salty toothpaste.. As I moved the oscillating toothbrush head slowly from one molar to the next, as per the video reserved for Jeremy Kyle fodder, tears streaming down my face and my gag reflex in overdrive, I slowly turned over the offending tube with my free hand… I had to take a photo because I couldn’t quite believe what I was reading…

Taste improvement over time. Smiley faces that aren’t smiling. ‘Most people liked its unique taste after 14 days of use’… Seriously???? I am quite clearly not ‘most people’ and having to endure its uniqueness for two weeks before it becomes remotely palatable does not fill me with joy… What if it never improves?? It doesn’t mention those poor sods, weeping and gagging, on the back of the tube, now does it??!! So no, I do not recommend Corsodyl toothpaste, for anything… ever!!

As you were…

As an aside, and because I’m clearly feeling better in myself than I have for a very long time, I have a somewhat shorter story to share in the hope that it may raise a smile, at my expense, naturally! I took my break at work today, in the canteen. I choose to sit on my own for an enforced period of necessary mindfulness. I happened to be sitting beside the small library of mostly unread books which resides in one corner of the canteen. I absent-mindedly picked one up and read the back cover. It was a puzzle book, written by code breakers who had managed to crack the enigma code. The book fell open and I read the puzzle. It was easy. I knew the answer! I read another, and again, it seemed strangely easy. I sat for a moment, in the rosy glow of success, congratulating myself on my apparent genius and considering future possible career options in the military… then I looked at the page more carefully… I’d been reading the answers.

Happy Bank Holiday Monday!

My morning rituals now include picking up bits of my cat and putting them in the bin.  So the routine I’m trying to shorten (remember the miracle medication?) is now even longer.  I wake up, sit on the edge of my bed until I think my legs will support my weight, stagger downstairs, picking up cat parts on the way, put them in the bin and proceed with the rest of my drink-drugs-feed cats routine.  Thanks Kitty!

I’m in a good place, mentally, emotionally and physically.  I know, I can hardly believe it myself!!  And I’m very reluctant to admit it out loud, scared almost that it will negate the way I’m feeling…  I’ve had a couple of weeks annual leave.  No holiday due to crappy timing of various appointments, but time to myself, time with my boys and time with my mum, which was apparently just what I needed.  Prior to that I’d hit an uncharacteristic, all-time low.  I was desperately trying to get back the me I used to be.  I saw my GP who suggested I find God and smile more…  Seriously???  I can see the funny side of that appointment now but at the time it was literally the last thing I wanted to hear.  I’m not even slightly religious so the chances of me finding God and Him solving all of my problems is fairly remote, and quite frankly, laughable!!  I have since had an appointment with my PD specialist nurse which has fortunately provided me with the support I was striving for.  She told me I’m in a good place which, from where I was standing, was a surprise.  I had no benchmark for Parkinson’s wellness so didn’t really appreciate how I was doing.  All I knew was that I was nowhere near as able as I used to be…  But it’s a matter of perspective, isn’t it?  I was measuring myself against the old me.  But I’m not that me any more.  I’m a new me.  The benchmarks for wellness have changed.  And in terms of those new benchmarks (elderly frail ringing any bells?!) I’m doing really well.  I needed to hear that.  And now I’ve heard it, I need to remember it.  I’m on a relative small dose of Parkinson’s medication.  There is still plenty of scope to increase that, if/when my symptoms worsen.  Although I’m currently banned from physio, for a totally unrelated but annoying ailment, I am continuing to see the physio, OT and speech and language therapists regularly.  With their input, I should hopefully continue to keep symptoms at bay for as long as possible.  I have been told to join a choir to help me maintain my speaking voice.  I don’t have a singing voice though, surely this will be detrimental to choir joining?!  Unhindered, I have decided to contact Gareth Malone (I have a bit of a soft spot for him – I know, say nowt!) to see whether creating a Parkinson’s Choir is within his remit…  If he’s got any sense, he won’t even acknowledge my email, but on the off chance he does, watch this space… I could just join a choir but I feel a choir of Parkinson’s people/for Parkinson’s would be a much more worthwhile and rewarding venture.  Otherwise I will just have to continue to sing to the radio at work.  You have been warned!!

Spending time with my boys has been a joy, literally.  They are so funny and knowledgeable.  Particularly about stuff I had no idea about or never even knew I needed to know.  Sam has lectured me on all manner of subjects, and although he sometimes bores me to tears (sorry, Sam!), I am so impressed at the depth of his knowledge.  We went to the Manga Exhibition at the British Museum, mainly for Joe, but I had thought Sam might enjoy it too…  After going round the exhibition once, he joined me on a bench while Joe continued to live his best life and absorb as much Manga as he could before we got thrown out because I kept using the flash on my camera.  It was an innocent mistake to make… three times!  Sam, instead, decided to lecture me about tourism.  Confident in his feelings, I wondered how I would approach the plans for the rest of the day as we were effectively tourists!  But we had a great day and are already making plans for a return visit.  Although Joe now has Birmingham on his book radar for our next outing.  I have promised a pre-school visit.  Not sure Sam will be as keen.  We have spent a few days with my mum.  I love spending time with her, no matter what we do.  This visit was primarily bookshops, Geordie culture (oxymoron?) and beaches, as many beaches as we could visit in 3 rainy days in the North of England.  I loved every moment of it, absorbing the salty, sea air into my pores, embracing the environment which is foreign to anyone living in the land-locked Midlands, taking photos, making memories and collecting sea glass to finish a very special craft project which was started almost a year ago…  I loved having my mum to myself.  After a recent spell in hospital, I was relieved to see her looking well.  We spent our evenings playing hysterical games of cards, dominoes and Scrabble.  My boys are useless but made up for lack of skill with cheek and humour.  I miss that when we’re at home and they are uncommunicative and lost to a world behind a screen…  Such a restorative visit.  I need more of that in my life.  We all do.

I’m still holding out for a puppy…  Mark is resisting because ‘the cats are still breathing’…  Despite his resistance, I am bombarding him with pictures of puppies currently for sale and funny video compilations of dogs.  All he can see is the negative side of dog ownership, which I am obviously well aware of but refuse to dwell on…  A dog will be so good for me therapeutically.  My physio, Fiona is all for it.  My PD nurse, Suzanne, also thinks it’s a fantastic idea to help with my motivation, mental health and exercise.  I went for a walk yesterday, well, what I actually did was spent an hour scrabbling around in the bushes around the golf course, looking for blackberries… but in my head I was walking.  It would have been so much more socially acceptable, well socially acceptable full stop, if I had a little dog in tow… Just a thought.  As I become less socially acceptable, I will need a dog to bolster me, don’t you think?!  That Dorkie has my name all over it…  I know you’re reading this Mark!

 

I’ve been awake since 3am. Tom and I have had tea and thick granary toast with grandma’s homemade marmalade. It doesn’t count as breakfast if it’s still dark when you eat it… I get more conversation from him in the wee small hours than I do at any other time. My insomnia buddy. Two broken people striving for sleep. We gossip and laugh and he tells me things I’ve never heard of and I’m not entirely sure I ever need to know… This morning he was educating me about drugs. Kids he went to school with, nice lads from decent families, doing stuff that just bewilders me! Someone pointed out to me recently that my son is boring, but give me boring any day if that is the alternative…

I am emotionally fragile. I had hoped that annual leave would bring with it some relief from the daily anxiety/panic attacks and subsequent worry and needless tears. It hasn’t. I believed that my mental health had suffered because of an incident at work. But I’m not at work now. I’m not having that daily struggle to even get in the car. Second guessing everyone and everything. The anxiety that I can’t be what they need me to be, want me to be… The panic when I’m not as good as I want to be. It’s still there. Only now, it manifests itself in a fear of situations beyond my control and the realisation that I’m not the person I thought I was. Why do I care? Why do I allow this to dominate my life? I’ve recognised it now after weeks of denial and abject misery. I’ve acknowledged that I can’t fix this on my own. So I’m getting help. I’m taking that first step towards fixing the broken bits of me.

My physical health is pretty crappy too. I know they go hand in hand and one has a direct influence on the other. I’m hopeful that by addressing both my physical and mental health I will start to feel a bit more like my old self. I haven’t felt that for a long time and I accept that I’m never getting that me back, but a hint of me would be nice. I have new Parkinson’s medication in addition to the drugs I was already taking. It is slowly beginning to make life a little bit easier for me first thing in the morning but the side effects are hard to take. I’m positive that ultimately the benefits will outweigh the negative side effects. Maybe? Hopefully… I was banned from physio last week. The pain in my right leg is now so severe that it renders me temporarily immobile. Not great… I have never experienced pain like it. Give me childbirth any day!!! So now I have to live in trainers, ugh…. Not my footwear of choice! And no bare feet, ever, ugh… And now my life is insoles and special socks and supportive footwear and standing at the bottom of the stairs. It will get better. Fiona tells me it will. I believe her. She’s been right about everything else so far. I need it better by Thursday when I’m taking the boys to London – eek! Better get on with those stretches that I’m avoiding doing because they really hurt!

My brother now calls me Angela Merkel. We have the same sense of humour so I think it’s hilarious! We text each other in German. If anyone asks why he calls me that, he tells them it’s because we have the same hair…. I need these brief interludes of stupidity and belly laughs. There is absolutely no offence meant. He is bringing my nephews to visit on Friday. A brief interlude. A pause in his mammoth journey from Northumberland to Cornwall. A much needed break in the journey for him and a much needed break from the norm for us. And it will be brief. Long enough to eat together and for Mark and Paul to make their pasty-related technical support arrangements. My husband will do anything for a pasty… or gin! I’m not painting a very good picture of him there, am I? I don’t mean literally anything…