Twelve noon strikes and I become the closest I get these days to a normal human being. Still can’t get used to the idea that mornings no longer belong to me but to my illness. On good days, like today, I wake with aches and pains and lethargy, swimming through treacle (unlike yesterday’s hungover porridge, so great improvement). Takes me an hour or so to get up, have breakfast, take medication, shower and get dressed.All feels as though it’s happening in slow motion and that I ought to have a button to be able to set to normal if not warp speed.
Then out to get paper and do a bit of shopping, have to stop en route for coffee and a sit down. Strange waves of tiredness and energy alternately run through me, feel like I can’t get to the next lamppost and then when I do, batteries somehow recharge.
And then about twelve, the normal clock strikes and I feel as though it might be possible to actually do something with the day. Lunch and a nap and then three or four hours of life that anyone else would recognise. The illness and lethargy are held at bay for another day.
But it’s still a surprise every morning that this lethargy is the new normal. I keep thinking that something will click into place and I’ll be back to my old self. Always an owl, rather than a lark, but able to function in the mornings.
I resist as strongly as I can the urge just to give up on mornings altogether and decree that the day now actually starts at 12 noon. Not quite ready for that surrender yet.
Slowly, very slowly, the ship of hungover porridge rights itself to something resembling normality. Takes most of the day though. Good friend comes for lunch and she’s pretty much in the same state I’m in so we take off our brave public facemasks and just admit how grim we’re both feeling. Then tuck into a hearty lunch and the self pity train leaves the station without us.
Have to lie down in the afternoon, but can’t sleep so just read and relax.
Got almost nothing done today, bar a feeble attempt at the crossword. But I pretty much survived the day with only a few bedraggled feathers and that is an achievement in itself on a day like this one has been.
Remains to be seen what unpredictable weather tomorrow brings. Glorious sunshine would be nice. Not holding my breath.
That’s how grim life feels this morning, the closest I can get to describing the lethargy, a combination of the worst hangover you’ve ever had (I’m not even drinking any more with all the medication) while wading neck deep through cold porridge. Yes that good.
Breakfast helps as does the prospect of a friend coming over for lunch (which thankfully I cooked last night). Things take a turn for the worse during my shower, when the boiler has one of its turns, I’m half way through, covered in soap. Water suddenly runs freezing cold. I have to sit to shower these days and the thought of getting out and slipping on the bathroom floor is scary. But the only other option is a cold shower. Perilous journey to boiler, some choice swear words, a few knocks and whistles and it’s working again.
I trust the day will improve as it goes on and at some point today I’ll feel semi-human. I had plans for today, nothing too extravagant, maybe a trip to the gym after all this time, as I’m fast losing any semblance of fitness. But today is a one foot in front of the other sort of day. One step forward, three steps back.
Can we just fast forward to tomorrow please?
Yes, well, not much to celebrate really, but the beauty of this month’s full moon has me entranced. I can all too easily focus on the negative these days, so time to appreciate the positive. From the micro to the macro – so I took a different bus route today to cross London and it was intriguing to go down an unfamiliar route. Why is it that really posh shops all have doormen – is it because the rich have lost the use of their limbs?
A trip to the Royal Opera House with my cultural Monday pal – another far out experience, ‘The Nose’. Plot is main character loses nose and spends opera trying to find it. Yes limited. But extraordinary to see the choreography, costumes and sheer splendour of the Opera House. Got a cab there and we were stuck in traffic, the cabbie asked me what time I needed to be there and I told him – we were cutting it fine. Are you singing? No I wouldn’t be this calm if I were. But was quite charmed that he thought I might be an opera singer. Next week we’ve vowed to come back down to earth in the cultural stakes.
And today to the V and A with another pal to see a wonderful embroidery exhibition. Highlight for me was a lovely Virgin figure playing with a Christ child. Never seen that before. Why is that exhibitions never have postcards of the best exhibits?
We followed it up with sushi to celebrate her new research grant working with Japanese Kategami – now there’s a slow art movement. I’ve become a slow art movement all of my own – a living installation, not sure what the title should be – Sloth Life with Stick?
And coffee with my new pal and delight in a friendship that has sprung magically to life. Good friend coming to lunch tomorrow so now off to make a lentil and chicken soup.
So not just the moon to celebrate.
And then there are the disconnections. Doing some training last night and as we were leaving and I was negotiating some tricky stairs, a lovely man I hadn’t seen in ages asked me how Mum was.
For a moment the whole world went into slow motion. I wanted to get down the stairs safely and couldn’t remember how much he knew of my current situation. I told him she was in a nursing home now as I can’t look after her anymore and he was duly sympathetic and said that must be hard. Things made more difficult by the other two people with us who do know of my situation and clearly felt awkward, nonplussed and not sure what to do.
The evening had been a great success and suddenly this lovely man, through no fault of his own, had stuck a knife in my heart, all the more painful for being unexpected. I was hurtled back to the pain of the whole Mum scenario, but didn’t want to blurt out the news about my current illness, though also odd not to do so. I didn’t want to have to deal with his reactions, as he was only innocently asking about Mum.
Then I remembered Mum’s reaction when she went to a posh do and someone asked after my Dad, who’d been dead for some time. She went to that same slow motion world, deciding it would be terrible to tell the man he was dead, as he would feel awful. So she said, ‘he’s fine’ which she believed he was in heaven.
I tried to be as gracious as Mum, but it felt as though I was abrupt and awkward with someone who only had the best intentions. The last time I saw him, I was living my old life, here I am living a completely different life, yet it seems on the outside I can still pass as living my old life. That’s the really painful disconnect.
So yesterday I met up with a friend of a friend for a coffee. He’s in town from abroad visiting his son and we have never met before. Turned out we got on like a house on fire. No small talk, just diving straight in to meaningful conversation, as though picking up from where we left off last time we spoke. Except we haven’t.
We talked about our mutual friend a little, but mostly we swam about in the deep, with the occasional paddle in the shallows. I’d only intended to stay for one coffee, but we ended up ordering again and were both reluctant to leave. Connections like that are only too rare.
Have been thinking about why some people you meet just do connect in that deep and satisfying way and seem to speak straight to your soul. It’s something to do with recognising and communicating with the other in a way we so rarely do without any of the social rubbish that usually gets in the way. A mutual recognition of the hard yards of life, without the fear, hesitation or layers of camouflage that usually manifest themselves and get in the way.
I’m immensely grateful for the gift of meeting him and we’re having another coffee or three before he leaves.
Mondays have been the hardest day of the week recently; a deep breath to nothing in particular when the rest of the world is getting on with things. The black cloud has been at its darkest and it’s been a huge effort just to get out of bed. What for?
Now that darkness has thankfully lifted, but Mondays can still be a struggle. So a very good friend and I have instigated a Monday culture club. Mid-morning trip to a museum or gallery followed by lunch. It’s been great, we’re working our way through all those exhibitions you mean to see and never get round to.
Today it was the Bjork installation at Somerset House. First go at virtual reality, headsets and headphones took us right into Bjork’s Icelandic landscapes and imagination. Stunning, immersive, overwhelming, out there, unbelievably creative. We were left gasping and giggling at her creativity. The staff couldn’t have been kinder in helping me navigate the different rooms, providing me with chairs.
An hour or so of what art should be: moving, thoughtful, creative, surprising. I took off my headset each time, surprised that there was a real world to come back to. Laughed with childlike delight when I realised if I turned my head with the headset on, I could enter a 360 degree Icelandic world.
Then choir tonight, cold and dark drawing in and our singing suffered with the cold. But a creative day and a cultural kick in the teeth for Monday.