Diary

Our Christmas Tale

Wednesday, 6th December

For a moment there, this morning, I thought that man of mine was going to stay in bed. He looked as if he was sound asleep but no, when I quietly asked if he wanted me to bring him up breakfast, he replied,

“No. I need to get up…”

It’s like Groundhog Day.

I picked Anneko up on my way to work – we were both running a bit late. Happy to tell you she’s a fan of Janis. Now, you don’t see too many of them at Roundhill! I can’t believe we have yet another week after this one. It feels very much as if batteries are running out and everybody’s eyes are showing signs of weariness… I forgot how bloody draining Christmas term is. Still, my morning was cool; had a great natter with one of my kids. We talked about missing people at this time of year, how most people carry some kind of loss with them and that it’s perfectly fine to talk about it. We finished laughing so I achieved something. Then, at 12.25 Harry rang me.

“I might need you to pick me up from Bristol… They’ve cancelled the train and it could be 4 hours before they’re running again!” 

I messaged Gabe so he could let Nige know and wouldn’t worry, then left. Man, the traffic through Brislington was hideous. It wasn’t much better going into Bristol either; lots of roadworks and lane closures. Still, I got there in under an hour, with no mistakes. Big pat on the back for me! The drive back was easier, especially with Harry for company. He failed his Theory Test again – shame but he’s okay about it.

When we got home, Nige was sat, alone, on the sofa. He looked utterly broken; sort of confused and anxious. I rushed to his side,

“I don’t feel right. I feel bad…”

“What do you mean love? Where do you feel bad?”

“I just feel wrong. I made a mess in the bathroom – so tired… There was no one here.”

He rubbed his head as I looked around the room. The empty wine bottle was on its side on the coffee table, my Nightmare Before Christmas snow-globe was on the floor. I took him up to bed and tucked him in. He instantly looked better. On my way to sort out the bathroom (it really wasn’t a mess) the phone rang: Ann, from Dorothy House. What timing! She’s organising a doctor’s visit tomorrow. I contacted school to let them know I won’t be in. Then I finished the bathroom, made lunch, took delivery of the 3 plasterboards and collapsed on the sofa. Curling up under Nigel’s ‘Snug Bug’, I let the tears roll. Oh shit, it feels very much as if my world’s about to shatter into tiny pieces.

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Nige got up for dinner and told me that he had fallen over earlier, knocking stuff off the coffee table.

“I couldn’t get up. I just laid there.”

“Oh sweetheart. Gabe was here but he was upstairs… When he was downstairs you were fast asleep!”

We get so much right most of the time, the occasional slip is absolutely allowed – we are only human. And very tired humans to boot.

As I sit here typing this, he looks much more awake. It’s bedtime…

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Diary

Our Christmas Tale

Tuesday, 5th December

Well, well, well, Nige took a sleeping tablet last night and guess what? He still didn’t sleep… I was up early again and offered to make him breakfast in bed,

“No, I need to get up…”

I’m never going to win this am I? So, best to go with it. For now, anyway.

I picked Anneko up on my way to work. I often see her but was never sure whether she’d want a lift or not. Some people cherish the solitude of a morning stroll to work and the offer of a lift then is the last thing they want. I asked her the other day, in the staffroom, and she told me she’d be grateful for a lift. Well, there’s an awkward moment avoided! Other than that short interaction and a natter with Gem, I’m still very much at arms length with everyone. My choice, naturally, and one of absolute self preservation I think. People fall into 3 groups; those who smile apologetically but never engage in any chat other than to pass on information. At the other end of the spectrum, we have the odd one or two who probe and ask pretty personal questions that really have me choking back tears and, finally, the ones who know me best: friends who know what to say, when to say it and when to shut up. Oh, and not to hug me – that’s my personal space right there people. So arms length is a healthy distance, I reckon. Especially mine, which are ridiculously short.

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I took Gabe driving this afternoon, to Homebase for some firewood. Nige looked quite poorly today – exhausted I think – and complained of being cold. At about half 4 mum and dad arrived. They find it incredibly difficult to talk to Nige, which annoys me somewhat. I sort of want to shout,

“HE’S STILL NIGE! HE’S STILL THE SAME!”

It’s not meant, I know, but it is frustrating none-the-less. We all sat and ate mum’s wonderful curry, chatted about Strictly and Brexit but every time I drew Nige into the conversation it wasn’t picked up. I suppose I should be grateful that they really are the only people we know like this and it stems from fear, I think, and anxiety. Also, my dad struggles with his hearing so he and Nige together are, well, pretty funny actually! The thing is, I understand all of it but Nige doesn’t; he’s starting to think they don’t like him. Hmm, tricky one, right?

I heard from Sandra this evening; Norah’s fallen and broken her wrist in a few places. She’s back at Susan’s which I know will’ve upset her hugely – she was ecstatic about being back in her flat and this must feel not only like a bad fall but a slap in the face to boot. Aha, any good news out there? Not too, good, obviously… No one likes a big-head!

 

 

 

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Diary

Our Christmas Tale

Monday, 4th December

I must’ve had a glorious nights sleep last night because I leapt out of bed, at 7am, like a gazelle. I was quicker than Nige and even caught Eccles on the hop! Such a lovely way to start the day; casually feeding a sleepy cat, putting away pots from the draining board, taking my Thyroxine at the CORRECT time… I may even have hummed a tune.

Then, at just 10 past, Nige was beside me. Thankfully, I was on a roll and smoothly went from preparing my porridge to his porridge and continued to tidy the kitchen. I swear, at one point there were bluebirds. So we ate breakfast together as usual, and Nige told me how he hadn’t slept,

“Sleeping tablets Nige –  you need to take them.”

‘No, I don’t need to. They don’t work.”

“But neither does not taking them… Look, whatever. You can’t sleep, take a sleeping tablet. You won’t take one, so don’t moan if you can’t sleep!”

I’m tired of this argument now. I think you can tell.

I left for work as Nige went back up to bed. As I leave the house I have an overwhelming sense of peace and freedom. Somewhere along the short drive from here to there, the guilt sets in and the tears fill my eyes. By the time I park up, I’m either fine or absolutely not – it’s very unpredictable. Today I wasn’t. He’s desperately unhappy, you see. Everything hurts and he’s, rightly, fed up with it all. To walk away from that, to a place he plays no part in, felt wrong this morning. But as I walk through the building, down to the staffroom, it felt perfect; like it’s the exact place I need to be in. This work:life balance shit I’ve got going on is the very epitome of being torn in two.

Home and busy! I won’t bore you with the details, you all get the gist – just add ‘Recycling Day’ and Christmas decorations to the daily list. The District Nurse popped in. She took Nige’s blood sugar levels and checked his swollen feet. She obviously repeated everything I’ve been telling him about the sleeping tablet and he seemed to get it… Harry put away the empty Christmas decoration boxes (oh joy!) and I massaged my man’s painfully swollen feet. At bedtime I suggested the sleeping tablet,

“I’ve taken it.”

“No love, that was the Quinine. The Zopiclone is upstairs…”

“Oh, I don’t need that!”

“Fine, then don’t moan tomorrow……”

etcetera, etcetera, etcetera.

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Diary

Our Christmas Tale

Sunday, 3rd December

Another truly reluctant early start. Nige cannot help but get up at 7, to feed the cat, make his porridge and take his tablets.

 

“You don’t need to get up…”

But I do. Though he hasn’t had a fall in almost a week, he has a tendency to forget what he’s doing (especially when tired) and only 2 days ago he dropped his Dexamethasone as he tried to place them in his mouth. This morning he prepared his porridge but forgot to put it in the microwave. I’m sure he’d have sorted it himself but I feel it’s important to know where we’re at, you know, as much as we can. I sat and watched as he ate and drank and took his medication, then we both went back to bed. He couldn’t sleep so neither could I… Back downstairs!

So much to do, so little time to do it and so few hands to help. With all the entertaining we’ve been doing, quite a collection of empty cans and bottles had gathered in the kitchen. That was the first chore then. Whilst bringing the recycling boxes back up from the front I stopped and chatted to Brent for a bit. The whole road were out doing the annual ‘road clear’. He asked after Nige and wondered if I’d be attending the AGM at Michelle and Paul’s. I declined – too much to do and all that.

Nige got up after lunch. He was very confused, cross with himself and grumpy… I made him his lunch (“too dry”) and carried on cleaning up the front room, ready for the tree. Then I took Gabe out for a drive. We drove out to The Globe, up to Newton St Loe and Pennyquick then over Odd Down and back home. Much improved, I think and we were just in time for me to start the dinner. I did a bit of delegation, you’d be proud to know; Gabe prepared the batter for the Yorkshire Puds and Harry put the lights on the tree. Slowly, very slowly, we’re starting to win! Pots washed as I cooked the dinner so as soon as we’d done I was ready to take Gabe to work.

Phew, what a whirlwind-day! Nige and I spent the early evening with Harry watching the final part of The Deathly Hallows. It was emotional, and Nige sobbed almost the whole way through. Later too, he sobbed. I honestly have no idea how to help him anymore than I am. He cannot put into words all his frustrations, just into his face and it breaks my heart. Such a beautiful, clever man brought down to this. There, that’s me sobbing now. This is what happens when I sit down and do nothing, I dwell. sad_christmas_by_melody368

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Diary

Our Christmas Tale

Saturday, 2nd December

The cat started meowing at 7.20 so, in a desperate attempt to keep Nige from awaking, I leapt out of bed, hobbled downstairs in the altogether (having left my dressing gown in the utility room) and headed him off. All was silent as I fed Eccles and then snuggled up under the furry throw on the sofa for a few extra winks. Just 20 minutes later Nige is looking down at me,

“What are you doing down here?”

So the start of the day was a slow one. The Prosecco from last night was not only bouncing around my head but the last glass that beat me still stood proudly on the coffee table, the aroma adding nothing to my slight hangover. Nige went back up to bed after he’d eaten breakfast so I snuggled back under the throw and slept for a while. I really wasn’t good for much else.

After lunch, Harry and I got the Christmas decorations down from the loft. Well, I stood at the bottom of the ladder while he swung like a monkey through the hatch and found all we wanted. For some time now I’ve wanted to make the Lego Hogwarts Express again so, as he was there I thought,

“What about the Lego? Pass down the Lego…”

Tearing him away from the newly found Lego was tricky but food shopping had to be done and, thankfully, Harry possesses the same, fucked up, ‘food shopping is fun’ gene that his dad has. In fact, not content with skipping around the aisles, he then decided it would be speedier to self-scan… It wasn’t. At one point I thought the assistant who kept coming to our aid was going to punch us!

imageThis evening we had more visitors. Rob and Jo came round at about half 7 to play ‘Ticket To Ride’. I’d tidied and cooked dinner, cleared up and hoovered. My Prosecco induced headache was gone and I wasn’t looking forward to round 2 – no wine then Lise. Simple. Just snacks, a good game and lovely company. Hmm. Jo brought wine and it’s just plain rude not to partake… Once we’d got through that, we opened the bottle that mysteriously found it’s way into the trolley earlier. Man, I have next to no willpower.

Nige was brilliant tonight. I knew he’d struggle with the game at first but he really persevered. He kept up with the conversation too – the same as last night actually. We said goodnight to Rob and Jo at 11.30 – way after his usual bedtime. Now, if he doesn’t sleep after two nights in a row of conversation, stimulation and the occasional beer, I’ll be surprised!

 

 

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Diary

Our Christmas Tale

Friday, 1st December

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Just two weeks left at school, amongst the glittering fairy lights, Nativity performances and excitable children. And I’m just starting to feel the spirit of it all.

As I left the house this morning, Nige pottered back to bed – he’s done that all week. I try not to think about him whilst at work but it just doesn’t work like that, life. You have no more control over your thoughts than a supply teacher has in a year 6 class, it appears.

This morning we had a whole school assembly to mark the end of a successful Maths Week. After break we were all back in the hall to watch the year 3 and 4 Nativity… you cannot deny the utter yumminess of a Nativity can you? It seemed to kindle a bit of a festive spark in me which has been conspicuous by it’s absence thus far. I may put the tree up this weekend!

At home, Nick was still in the garage, plaster-boarding it, Nige was up but napping on the sofa and Harry was sorting himself out something to eat as he was expectedly working at 3.30. I decided to not do the food shopping (putting off what could’ve been done today until tomorrow). Instead, I let Harry drive down to Morrisons, to work, and picked up a few essentials before coming back home. He’s good in traffic, very laid back and unflappable. At half 5 I did the same with Gabe – to the fountain though, where he jumped out to walk on to work. Again, a good drive, though a little quick at the moment!

We had guests tonight; Gemma and Matt with Schwartz Bros Burgers – glorious! Nige was awake and chatty, loving his Chicken Special and the carrot cake made by Gem’s nan. Gem and I polished off two bottles of Prosecco and hooted with laughter reminiscing over past talent shows, Christmas nights out and flat tyres… A truly wonderful evening and the perfect end to the first day of the festive season…

 

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Diary

It’s That F**king Time Again…

As we hurtle into the festive season I find myself desperately applying an imaginary brake whilst, simultaneously, trying to navigate my life through its potholes and detritus; to make sense of the past few months so I can attempt a happy Christmas with my man and my boys.

Since last we spoke, Nigel’s tumour has continued to wreak havoc on his extraordinary brain, causing more focal seizures and the eradication of more words from his vocabulary. His steroids are up to 8mg daily which, though they help with relieving the pressure on the brain, have the undesirable side-effect of facial swelling – truly upsetting Nige every time he passes a mirror. He sleeps more and more – again, something he just can’t cope with, being of the mind that he should be awake all day and asleep all night. We have explained (Gabe, Harry, the district nurse and I) that it’s perfectly normal and, in fact, denying your body the sleep it needs can be very counter-productive. But he’s not having any of it, choosing instead to believe what his poorly brain is telling him… You pick your battles though and, frankly, if he wants to spend the day fighting sleep and consequently being grumpy, well, I can live with that.

November has been a busy month, all those jobs Nige has been desperately trying to sort out are well on the way to completion. Matt was here for two weeks, fitting a new bathroom upstairs, which coincided with the roofers replacing the fascias and guttering and the escalation of Nigel’s seizures. I made all the workmen aware of his illness and just asked them to be polite but un-intrusive. I knew Matt found it hard – having known us for almost a decade, seeing Nige so altered both mentally and physically shocked and saddened him. He didn’t say that of course, but it was there, on his face. A look I’m familiar with now, though it breaks me up inside every time I see it. After two weeks and a few more positive encounters with my man, Matt relaxed, adjusted and embraced it all. I knew he would – people who care do. But a great, gloomy cloud sat above Nige in November and it took a visit to see Dr Brooks before I finally figured it out. A proper ‘d’oh’ moment.

We sat in the small room, discussing tablets and how things were going. Nige expressed his annoyance at having to take so many tablets.

“It’s wrong…”

So Dr Brooks suggested we keep the same dose but in larger (so fewer) tablets. As I explained this, I could see it wasn’t going in and all the while Nige sobbed intermittently. At that precise moment, I recognised in him the same thing I have carried around with myself for 20-30 years; depression and loneliness. Having all those builders around yet none of them interacting with you – can you imagine? Not being able to wander outside and have a natter or offer them tea and coffee. Unable to pop out to the shops for a bit to get away from the disruption. Just napping on the sofa; vulnerable in your own home. It’s fucking unforgivable actually. As it all crashed into my head and formed an orderly conclusion I settled on the solution: Nigel needs company whilst I’m at work. He has two sons in the house who must start engaging with him more. He has friends and family who can visit too. It can’t all be me, one depressive to another doesn’t sound too healthy. Then I thought,

“Maybe I need company too…”

Yes, I think it’s clear. When Nige deteriorates, so do I and so when Nige needs extra help, so do I. There.

We leave November better than we found it. Harry (still very much in limbo) has spent more time with his dad, playing PS4 games with him and entering some pretty surreal discussions! Gabe continues to offer him hot drinks and curries. Me? Well, I’m still doing everything else but with a slightly less burdened heart. Which is good.

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