I’m astonished by how long it has been since I last posted on here! Who knew how time-consuming writing a poem every day would actually be?! I’m back. I need to blog again for my sanity… or should that be insanity? I’ll let you be the judge

I need to talk about Tom. Because I don’t. Not enough, anyway. Mostly because he didn’t want me to talk about him. But also because there is so much to say.

Tom is my firstborn. The easy, laid-back baby who eased me into parenting gently. Tom paved the way for his brothers who hurtled me headlong down the helter shelter of parenthood, and we’ve been laughing hysterically and clinging on for dear life ever since!

Tom is the baby we longed for, the excited anticipation of first-time parents overriding any fears we may have had but refused to give a voice to. Tom’s arrival into the world was not how I’d imagined it would be. I think I kicked and screamed more than he did, numbed and nauseous from too much Entonox and Pethidine… it wasn’t the peaceful birth I’d imagined. There was no magical first golden hour of parenthood. Instead, I was all-consumed with trying not to bleed to death. Clearly I didn’t, but selfishly, the first 24 hours of Tom’s life were all about me. And yet I can hardly remember those precious first moments.

Tom was a lovely baby, a lovely kid… always happy and so funny. He loved dressing up and was obsessed with Star Wars and computers from being very tiny. He is his dad’s mini me. His school days were unremarkable. He wasn’t academic but he tried hard and he was never in trouble…what more could we ask?! His brothers had arrived and took up a lot of our time so it was a relief that Tom just got on with it…

Fast forward to now. From that beginning and that childhood, I never expected to be where we are now. You don’t see it coming. You don’t expect it at all. Then ‘bang’! That world has ended in the blink of an eye. You are thrown into darkness and have no idea how to find the light. No one helps you. No one tells you how to get help. You are left stumbling around in the darkness, fumbling around for help, arms outstretched, reaching and hoping, while your child is disappearing into inky blackness, as he tells you he wants to end his life…

One minute he was at university, one module away from completing his degree, the next he was in his bedroom, distraught and unable to even just ‘be’… rocking, wringing his hands, pulling his hair out, pale and crying. I have never felt more helpless in my life. I wanted answers where there were none. I wanted help where there was none.

The GP prescribed Mirtazapine. Tom slept all day and was up all night. He would not engage with anyone. He barely left his room. I worried less about suicide and more about getting Tom back. Would we be able to? Was he still in there at all, or had we lost the old Tom?

Months passed. Nothing changed. We became frustrated. Mental health services for adults are woefully lacking and difficult to access. Eventually Tom agreed to try counselling because the medication clearly wasn’t helping. It was a tiny step but he agreed.

After a few sessions we began to see glimpses of the old Tom. He started to take an interest in life beyond his bedroom. A few months later and he started to walk the dog. Tiny steps to some people, but life-changing for us.

The turning point was some months later when Tom was allocated a Wellbeing and Work coach, Matt. Matt helped Tom to understand who he is. Tom has been assessed and as well as Social Anxiety Disorder, he also has autism. The light had been switched on. Tom has the support he needs now and is learning to manage the aspects of life which he finds difficult. It had taken 18 months for this to happen, but I am so grateful that he has been able to access this support.

I have to end this by saying Tom is amazing! I am so proud of him and all that he has had to overcome. He is working full time now and yesterday bought a new car. I don’t for one moment imagine that there won’t be bumps in the road in the future, but today we can celebrate having our Tom back. ❤️

Mental Health was something I never truly understood. Lived experience is a great teacher. It’s a tough lesson to learn.

Rheumatoid arthritis to add to my ever-growing list of long term ailments. And before anyone says it, I know, it could be worse… But I just need a minute. A minute to shout and scream about the sheer injustice of it all. I’d just about got my head around the whole Parkinson’s thing, and I think I was dealing with that ok … and then, wham! Throw RA into the mix. At least it wasn’t all in my head! There is something wrong with me. Ok, something else wrong with me. And I’ll get over this too but I just need a minute…

The consultant was lovely and funny, but mostly just lovely. I needed that today. All doctors should be like him. Even when he asked what medication I take regularly and I handed him my list… Good God, that is a LOT of medication!! I mean it is, but he really made me laugh. He was genuinely sorry that I have Parkinson’s Disease and assured me that RA will be a walk in the park if I can deal with Parkinson’s… if steroids and methotrexate are ever a walk in the park?! So bring on the drug-induced feeling shitty because I’m used to that, and it can only be better than this. And what’s the alternative anyway?! So I’m wallowing because I can. Because no one really gets it. Because I know I will give my head a wobble and normal service will resume. Not today. Not tomorrow. I don’t know when. But I’ll be back. Because there is no other option. Normal service must resume because I have things to do. I mean, what the hell am I going to do to fundraise for NRAS?!! 😉😁

I’ve put my big girl, chub rub pants on and I’m ready to do this!! Six weeks of steroids – yay! I can eat whatever I like and just blame the steroids – for everything! Methotrexate -yay! Shitty side effects will be worth it. Back to normal. Back to being a proper wife and mum. Back to work. Back to enjoying life. Back to being pain free. Maybe… If I could cross my fingers I would! Wish me luck and hopefully I’ll see you on the other side xx

I’ve borrowed todays poem because it’s relevant and resonates… You have to laugh…

You have to laugh

It’s the only way

To get through life

Day by day

Today was funny

The joke was on me

The need for x rays

Hadn’t occurred you see?!

Hands and feet

Was okay

But chest was pushing it

I have to say!

Take off everything

Above the waist

Just pants and a gown

Left me red-faced!

Chub rub pants

Are a necessity

When you wear a dress

And you’re a larger lady

I hadn’t planned

For them to be

On display

For all to see

But there you have it

My little gaff

Gave the radiologists

An unexpected laugh!

I couldn’t wait

To get dressed again

Pants safely hidden

Unlike my disdain!

I’m writing this post from my bed. It’s almost lunchtime and I’m still in bed. My 12.5 hour shift has wiped me out. My physio said last week that I’m ‘massively fatigued’ which is more than a bit tired apparently. So when that is your starting point, it doesn’t take much to wipe you out. A 12.5 hour shift will certainly do it. I was full of good intentions when I woke up this morning, and yet I’m still here, in my pit because I literally cannot function. I can barely get my finger to move to type this post on my phone. And yet, I don’t want to sleep. I just want to ‘be’…. Not moving is amazing! I told Fiona, my physio, that I feel as though I have been switched off. She is desperately searching for my ‘on’ button for me. She didn’t give me any exercises when I saw her. She listened. She really listened. And the fact that she understood me made me cry. It’s so important, you know? To be heard. I’m so lucky to have such a fantastic team of experts caring for me. Anyway my on button appears to be buried under a mountain of fatigue and under medication. She is addressing both of those issues for me by contacting my PD nurse to start me on another faster-acting drug and getting me an appointment with my OT to see whether she can help me manage my fatigue better by looking at my daily routine. I have a routine?! At this point I’m game for anything which gives me a bit more oomph because it is severely lacking. I don’t want to have to spend all of my days off in bed because I literally can’t move. I imagine it’s a bit like Locked-in Syndrome where you are conscious but can’t speak or move. I’m so dramatic aren’t I? In the back of my mind is the nagging doubt that although Fiona is pulling out all the stops to get me back on my feet and functioning more normally, this can only mean that my Parkinson’s is progressing. She told me I’m doing OK, it just doesn’t feel like it at the moment. It’s so hard to keep going. I haven’t felt like this before. Before there was no question. Now I wonder whether it is worth the effort? Who will benefit if I force myself to keep going. How many days like today will result? Is this what life will be like for me now? Maximum effort to appear as normal as possible on the days that I work and then total wipeout on the days that I don’t. I’m not sure that’s the life I want but what is the alternative? I don’t really think there is an alternative. Put up and shut up. Everyone has their own problems and difficulties. Mine are just a small inconvenience when compared with the situations other people find themselves in really…

I suddenly find myself surrounded by all sorts of tools and gadgets which I never needed before. A sign of the times perhaps? Or a sign that my Parkinson’s is progressing more likely… I have a special wedge shaped cushion in my car to remove the bucket shape from the seat so I can get in and out of it more easily. I have Ziggy my stick who accompanies me more and more frequently now so I don’t get stuck. I have a ridiculously long shoe horn so I can get my shoes on. I need something to help with socks because that is becoming trickier by the day… and tights… jeez! I am gradually opting for more electrical kitchen gadgets to make cooking less of a chore. And now I have my Snoozle and my splint so bedtimes are highly entertaining for any unsuspecting onlooker. My Snoozle is amazing because turning over in bed is a particular problem for PWPs. But the silky slide sheet is also highly dangerous if placed on the floor or too close to the edge of the bed! Now I don’t get stuck like a turtle on its back. I’m gliding all over the bed! Add in a metal elbow splint designed to keep my arm straight until I can have surgery to correct a little nerve problem and you can see the entertainment value. Mark plays a game of risk every night sleeping next to me. How many times will I whack him with my uncharacteristically rigid arm as I slide uncontrollably round the bed on my silky sheet?! You have to laugh!

Since I started writing this post I have received a phonecall from Katie at Parkinson’s UK to discuss my latest fundraising efforts. That would be the little challenge I’ve set myself to write a poem a day every day this year. She thinks it’s brilliant and has been so supportive. She’s going to do a press release in April for National Parkinson’s Awareness day detailing my efforts! She also wants me to send her a poem a week that she will feature on the Parkinson’s UK fundraising page. I’ve also got to set up a blog purely about my poetry journey and feature this challenge. Busy, busy, busy! But I’m loving it because I can do it!!! I’ve also be put forward for Parkinson’s Arts. I’ll let you know more of what that involves soon!

https://www.justgiving.com/fundraising/clare-gill13

That happy phone call motivated me to take the dog for a walk. It’s amazing how you can lose two hours just wandering along the river with a happy hound 😍 And it’s amazing how much better you feel after doing just that!

It’s a matter of perspective. I am happy. There is enough for me to be happy. My family. My friends. My dog. Doing things I enjoy. That should be enough surely?! But then I factor in the constant pain and inability to move. I factor in the tremor that stopped me eating my shepherd’s pie… not completely, but enough for me to notice it’s impact instead of ignoring it like I normally would. A temporary hiatus. I factor in spending time trying to do nice things for people who demonstrably don’t appreciate my time and effort. And it is an effort. Everything is an effort at the moment. But to counter that I just have to reread the messages I have received, the lovely messages from lovely people. Why can’t I focus on them?! So it’s been a funny day. A difficult day of getting stuff done. But I got everything done on my mental ‘to do’ list so I should count that as a win! And I managed to hobble along the river with the dog, me wearing a Christmas tree on my head, and him wearing his scarf. We got some funny looks but we had a lovely walk. Until the dog jumped in the river after a pheasant which had been trotting comedically along the path in front of us. Suddenly it took flight across the river and the dog followed, scarf and all. He bounded up the river bank looking very pleased with himself, unaware that his Christmas bath had instantly become a distant memory and pointless exercise as he came into contact with the murky, freezing cold river water. He waited until he was standing right beside me to shake and consequently relieved himself of a few litres of filthy water. The beautiful cream pompom on his scarf hung heavily between his knees like a geriatric sagging testicle. As he shook, the now grey pompom slammed into my calf, soaking my sparkly leggings with murky water. The pompom now hung much lower. So as the hound sniffed and explored every filthy puddle, his pompom became dirtier and dirtier, collecting the varying detritus as the river path gave way to golf course and then tarmac. I thought it was a lost cause. Too filthy to revive. But some gentle hand-washing and a Christmas miracle occurred!! It is restored to its former glory!! For indoor wearing only in future. Bloody dog! Bloody dog who is wearing eau de swamp again!! Happy Christmas!!! For your enjoyment I have posted the before and after photos below!

I’ve been writing more poetry because that’s how I roll when I am struggling so I give you a rewriting of Ding Dong Merrily on High that I’ve already shared on social media, and then a much less jolly and much less Christmassy poem about Parkinson’s (sorry!). Merry Christmas! Xxx

Ding dong merrily on high!

At Queens midwives are working

Ding dong, hear the babies cry

There really is no shirking

Gloria. Babies are born at Christmas!

So while you eat your Christmas fare

We’re delivering babies

We do this job because we care

And we’re all slightly crazy!

Gloria. Babies are born at Christmas!

Think of us this Christmas Day

Working as hard as ever

Taking care of mums and babes

Good care is our endeavour

Gloria. Babies are born at Christmas!

P is for progressive

Parkinson’s cannot be cured

A is for anxiety

Caused by all that you’ve endured

R is for rigidity

No longer able to bend

K is for kinesia

Brady is his friend

I is for insomnia

It’s impossible to sleep

N is for neurologist

Appointments you should keep

S is for slowness

In everything you do

O is for overcoming challenges

You must face quite a few

N is for nerve cells

You are missing some

S is for stiffness

Hard to overcome

Parkinson’s is the gift

That just keeps on giving

Just don’t forget

That life is for living!

So over the last couple of days, I literally aged another year, I got stuck in bed and fell out of it, and then got stuck on the floor! Parkinson’s, I applaud you. You are seriously excelling yourself at the moment. This whole getting ‘stuck’ malarkey is getting boring. It’s so difficult to explain to someone else. I mean, how do you get stuck in bed??? I honestly can’t answer that, but I do, often! Its tedious and frustrating and exhausting. Yes, even though I’m stuck in bed, it’s bloody exhausting trying to get unstuck! I am literally like a turtle on its back. And there’s no moving that without some heavy duty lifting equipment or a conveniently positioned chunk of wood. Like I say, don’t ask…. I also have a significant and noticeable tremor during ‘off’ periods which funnily enough, is worse in my legs. It was always worse in my hand pre medication and now it is blighting my legs, plural. Significant enough that Mark can feel it when I’m lying in bed… and no, not in a good way! Symptoms affecting both sides of the body are a sign that Parkinson’s is progressing. Really?? Well I’d prefer my sign to be of the pink neon variety rather than the tremor equivalent of St Vitus Dance!! So that was my birthday. Happy Birthday to me! I’m being a bit unfair. I had a wonderful birthday despite what I’ve just written. I was spoilt and loved and that is enough xx

So in an effort to prove to Mark that romance is not dead despite my malfunctioning body doing it’s best to prove otherwise, I decorated our headboard with twinkly little fairy lights. It looks so pretty. However, rather than rose petals on the bed, or a chocolate on our pillow, or some other equally romantic gesture, when I got out of the shower tonight, I found this…. er, no!

I’m trying to get back to the positive mindset I normally have, despite everything I have going on at the moment but it’s hard and will take time. In the meantime I am trying to be a bit kinder to myself and breaking out Ziggy to help get me up the hill at work because physically I’m really struggling. Please be patient with me. Normal service will resume because it has to! Lots of love to anyone else who is struggling at the moment. Christmas can be such a tricky time of year ❤️ xx

I know I need to follow up my last post. And I will…. Soon. But for now I’m dealing with it in the only way I know how… a poem.

Imagine you are made of glass

Transparent to the core

So fragile, but also tough

Unless there is a flaw

Imperceptible at first

The flaw cannot be seen

You live your life, unaware

Of what this flaw will mean

Imperfection does not mean ‘bad’

It just means you’re unique

But as others notice your flaw

Some answers you will seek

By now the flaw is noticeable

And cracks form in your glass

Permanent and life-changing

You can’t get a free pass

Imagine you are made of glass

And new cracks form everyday

You can’t prevent it happening

Once formed they’re here to stay

As more cracks are created

The old you disappears

Until there are more cracks than glass

The sum of all your fears

Now you are still made of glass

But so much of you has gone

Replaced by a version you’d never choose

But it’s a conclusion foregone

Imagine you are made of glass

Not perfect in any way

But you can be whoever you choose

When the flaws don’t get a say!

You can’t glue the glass to fix the cracks

The damage has been done

You face challenges life throws at you

Who knows what you’ll become?!

I don’t want people to feel sorry for me. That’s not what this is about. This is about me remembering significant events and acknowledging when things changed. Things changed last night. Most people would remember last night for the Maternity Christmas party. And I will remember that. If my stupid brain allows me to. The photographs will remind me that I was there. Surrounded by beautiful people who were enjoying time together away from the stresses of work. Time to dress up and have fun. Although it started out being all those things for me, the night ended very differently. It ended with me a sobbing mess and Mark wondering what the hell had happened for me to be in such a state. Nothing had happened, and yet so much had changed. And I wasn’t ready. I wasn’t ready to feel like that. I wasn’t prepared for that to be the last time. But it hit me as I watched everyone laughing and dancing and having a great time. I can’t do this any more. I can’t be the person who sits on the sidelines watching everyone else enjoying themselves. I can’t be the person who other people take pity on because they are sitting on their own. I can’t be the person who makes other people feel guilty for enjoying themselves. I can’t be the person who chooses not to take her medication so she can stay awake but then when her meds wear off she can’t function anyway. This is not a choice I want to make but last night it hit me like a ton of bricks. Bit by bit, little pieces of my life are being taken away from me. In isolation, it’s no big deal, but when you add them all together, they form decent chunks that I’m not ready to lose. I won’t be going to any more parties. I thought I would be happy watching everyone else but I wasn’t. It’s not enough. Last night I grieved for the part of me that can no longer dance at discos. I grieved for the unmedicated me who didn’t have to think about the consequences of not taking a cocktail of five different drugs at 10pm every night. I grieved for the unthinking me who just did stuff. I grieved for the me that didn’t have Parkinson’s… Mark held me while I sobbed, not really knowing why I was so upset. It’s so hard to explain without sounding petty and ridiculous… so, you’re this upset because you couldn’t dance?! I get it. I know how it looks and sounds to other people. But it’s more than that. How much do I have to lose to Parkinson’s? I thought I had this. I thought I was better than this. Turns out I’m not…. And that makes me so sad.

And today I have been thinking about how my life impacts on Mark’s. How hard must I be to live with? Being there for me while I act like my world has ended when I’m supposed to be out enjoying myself, and not really understanding what went so badly wrong. He watches me slow down. He watches me not be able to do things I used to be able to do easily. He watches me in pain. He watches me unable to move. He watches me as I torture myself in frustration that I can’t be who I want to be, and do what I want to do. And yet his support is unwavering. He has me. We have an easy relationship. No fighting or arguing, with some mutual mocking thrown in for good measure! But when it matters I know he’ll be there. What will it take for that to change? I hope there’s enough of me left for that never to matter. Is love enough?

Today I drove myself crazy, trying to recall a conversation. It wasn’t just that I couldn’t remember exactly what I’d said… I couldn’t even remember the conversation had taken place! The other person could recount the situation in which the conversation took place and gave almost a verbatim word-for-word account of what was said. I couldn’t recall any of it. Not even the faintest flicker of the beginnings of a memory. I questioned whether this was a cruel joke to make me believe I’d lost my marbles?! Apparently not… And then panic set in! Real gut-wrenching panic. How could I not remember even having had that conversation which others had such a clear recollection of?? How many other things had I forgotten?? I tried to recall the details of events and conversations which should have been significant enough to create a lasting memory. But the more I tested myself, the less I could remember. And the more frightened I became. My cognitive functioning is being affected. Is this the beginnings of Parkinson’s dementia? It could be. I can’t have cognitive dysfunction. That would be a really cruel blow. I can’t work if I’m cognitively impaired… And then the more I thought about it, the more upset I became until I was sobbing at the thought of losing my faculties. It’s not time for that! I’m not ready… I can’t escape the fact that the line between reality and imagination has become somewhat blurred for me. What I mean is that I sometimes can’t distinguish between dreams and reality and honestly wouldn’t be able to tell you whether I had dreamt something or it had actually happened, if it falls within the realms of possibility. That is so scary, knowing your memories are slipping away. And knowing you don’t know whether something happened or you just dreamt it. And the cruellest part is being aware that you are losing your mind. I’d rather not have that awareness. Just take it all away but leave me in blissful ignorance to enjoy the bits of my life I have left. So I’ve been researching Parkinson’s dementia, Lewy Body Dementia and general Parkinson’s cognitive decline. It didn’t make for enjoyable reading. In fact I’m now petrified! So many things are now pointing towards the fact that my Parkinson’s is progressing. I’m not ready…. I need more time. I know ignoring it won’t make it go away but if I don’t address it, I can at least pretend for a bit longer that it’s not happening. The boys asked me why I was taking photos of them and the dog with his carrot… if I can’t remember, at least I will have the photos. So many photos…. Please take photos of me even if I protest, then even if I forget the good times, the photos will prove to me I was there xx

Aside from being crazy, I have spent the day making teeny, tiny Santa hats for teeny, tiny, ugly plastic babies which will eventually be glued on to baubles which will then adorn the ward Christmas tree – if we can find it! I quite enjoy mundane, repetitive tasks like this one. Christmas music blaring so I can singalong and a glass of sloe gin. It’s so satisfying when the completed pile of babies is bigger than the ‘to do’ pile. It will be even more satisfying when they’re all done. I’m at the stage now where I’m wondering whether ugly plastic babies need to be festive? Some of them have unfortunate Hitler hair so the hats help to hide that at least. Could end up being a thankless task if we can’t find the tree…. Does anyone need 200+ fugly plastic babies??? Thought not!