Two nights of proper sleep after five very disturbed nights are starting to make a difference to my mental wellbeing. Realised still suffering from the effects of exhaustion when I came back home to find the front door ajar. Now I’ve read enough detective stories to expect to find a body in the sitting room, but thankfully everything was as I had left it, nothing missing. Just so absent-minded at the moment due to lack of sleep.
Off to the hospital to see the big cheese as I do every three months. It’s almost impossible to prepare for as it will be either ok news or very bad news. I’m never been much one for what ifs or crossing bridges before I come to them and this illness has reinforced that. No point in thinking about the catastrophe scenario until you get there, though it’s always peeking round the corner.
But it’s good news, big cheese says I’m doing ‘fantastically well’, tests show I’m on an even keel. Another three months off the leash, with no hospital visits or tests. Pop in to see my specialist nurse who is delighted at the news. ‘Gone back to work yet?’ What a delicious thought that is, for a few seconds, I’m not sure what to say, it takes me so by surprise. I can’t do my old university lecturing job, which I loved as it involved a lot of travelling and that’s no longer possible.
I do have a job interview (imagine that!) this afternoon though. Time to get the smart rags on.
Nothing is ever simple is it? I called the chemist to make sure my prescription had come through, but no. So another terrible night’s sleep in prospect, which I can’t face. A flurry of calls between the chemist and the receptionist at the GP, both of whom are extremely helpful. Turns out the GP has been extremely busy and simply hasn’t had time to do the necessary.
But it’s approaching 6pm when the chemist closes and that means another night of no sleep and I’m not sure my body can cope. Finally the very kind receptionist makes it her job to make sure the GP signs the electronic prescription between a long patient list (she’s still seeing patients having started at 8am and will go on till 6.30, who says Gps are lazy?)
I look out of the window at a sudden burst of yellow light on the trees, quite astonishing. Two minutes later a rainbow – I take both as a good sign. Sure enough at 5.55 I get to the chemist and the prescription is there. I think about kissing her hand in gratitude, but realise they might actually section me.
Do a quick bit of shopping and then can’t get my key in the door of the block where I live. Takes me several minutes to realise I’m so tired, I’m trying to get into another building two doors down.
So see you on the other side of the first proper sleep since Wednesday.
So I’ve been quietly going mad again with sleep deprivation. My lovely GP was concerned last week that I had been on the current tablets too long and we discussed changing to another drug. First night of waking every hour, I put down to the change in prescription, by the second night I was also having bad side effects which I won’t trouble you with now.
Having talked to the GP, she suggested stopping and waiting to see how I felt today. I did stop, the side effects stopped but I had two more nights of terrible sleep. Waking up every hour, watching the clock change, desperately tired.
I spoke to her again today and we are going back to the old drugs. I don’t think I’m addicted to them, they just seem to work and give me a good night’s sleep which is what I desperately need. But to be honest even if I am addicted, so what at this point? Not the GP’s fault at all, she couldn’t be more supportive.
Tests at the hospital again yesterday and I see the big cheese on Wednesday. This is all hard enough without prolonged sleep deprivation, which does feel like a form of torture.
Just off to the pharmacist to collect my old friend and fingers crossed I get a decent night tonight.
Today was a day savouring the details of life. The daffodils and florentines that a friend brought round yesterday – see pic below. Daffodils are filling the kitchen with yellow light and that tremendous aroma of spring. The florentines come second only to dark chocolate in my list of ideal food treats.
Spring comes with its own sadness of course, my brother rang last night to say that the bulbs I planted for Mum a couple of years ago in huge, great grey pots were coming up. Delighted and sad that Mum will never see them now and that I planted them with optimism and they are still flowering despite everything, which is some consolation.
The sunshine has a magical effect on Londoners, they suddenly transform into daring versions of themselves. A woman balances on two metal bollards to get full sunshine. I’m admiring her athleticism when the man next to me on the bus, also armed with a stick says,’ Long time since I could do that.’ Me too mate.
I do manage to lean against a bollard to take full advantage of the sun while waiting for a pal. We go to see ‘Lion’ which is a bit ‘meh’. The usher warns us to get the tissues out, but despite the beautiful filming and touching story, I’m always aware I’m watching a film, so no blubbing from me.
On the bus home I get into conversation with two elderly Americans who are the best of their country; softly spoken, cultured, witty, kind. They’ve been to a dozen plays while here and are now taking their grandchildren around. They’re horrified by the current politics in their country and ask me how I feel about Brexit. Equally horrified of course and I tell them that many people in this country love the USA. ‘Oh we love your country too,’ says the elderly gent.
Small flickers of light that hold the darkness at bay.
Made it to Church this morning after several weeks, either too ill or not enough energy to get there by 10.30. Felt good to be in a community I’ve worshipped in for decades and lots of people came up to me to say hello and some version of the dreaded, ‘you’re looking well.’ One person even asked if I’d been away to a spa. Difficult to remember that this comes from a place of kindness, makes me fast forward straight to grumpy. The best I could do today was to say that I’d been having a lot of sleep.
However well-intentioned, being told you are looking well by people who know how ill you are should be illegal. I know they need to say something, but almost anything would be better than this – it takes away all agency, hints that you’re looking so well that maybe you’re not as ill as you’re making out (I know this is madness, but that’s how it feels).
Or why not just ask me how I’m feeling rather than telling me? One good friend has taken to saying, ‘you’re looking…..rested’ neatly avoiding the well trap. It should only be said ironically (as when another formerly seriously ill friend and I greet each other and then laugh like drains).
But enough ranting, it has been a very companiable weekend; a long catch-up over cake and coffee with my goddaughter, Church and lunch today with my nephew and his new (and very lovely) girlfriend, a Skype to Mum and dinner this evening with one of my oldest friends.
The week ahead is just busy enough and for once I’m not dreading Monday (whisper it very quietly). I started doing my knee exercises yesterday and was very stiff today, but know that in the long run they will make all the difference and with any luck I’ll be able to get rid of my stick. Long haul though and I mustn’t fall into the competitive trap. Just a few exercises several times a day to build up strength and more walking.
I have a new pile of books to read, life is bearable.
Another strange, unpredictable week. Three days of pretty much normal activity; I’ve been getting up earlyish for me these days, around nine, taking the meds, having breakfast and then resisting going back to bed. So the day proper is in motion by ten rather than by lunchtime as more recently. Means I get more done and perhaps more importantly, am more in sync with the normal world. So sleeping well, having a lie down but not the two to three hour nap, as of late and eating well and trying to walk more.
Feeling rather pleased with myself as the days have included trips to the cinema, a musical concert and coffees and lunches with friends.
Thursday morning I wake up feeling as though someone has unplugged me from the mains. I barely have the energy to lift my head from the pillow. Having slept through the night, I spend most of the day fast asleep, only waking to have drinks of tea or water and trips to the bathroom.
I come to around 4, but there’s not way I can go to my evening meeting, so I call to apologise. Around 7 I realise I’m hungry and have only eaten a banana all day. So I cook myself some healthy food and then sit on the sofa and read until time for bed. Sleep right through the night and wake up a little fearfully, but semi-normal transmission has been resumed and I manage to get going by 12.
I’m taking it as just a blip, the previous three days felt great and I didn’t feel as though I was overdoing it at all. An occasional terrible day is manageable, it’s just now knowing when, or indeed if, you’re getting plugged back into the mains that is scary.
But today I did a bit of shopping and then sat in the garden in the sunshine and read the paper. Felt wonderful to be able to take my coat off and do the crossword. A man was walking a hawk round the garden to frighten off the pigeons.
The bright yellow crocuses were poking out of the grass, spring has arrived with all the hope that brings.
Gosh nine days since my last post. No dramas, bruises from the fall in the kitchen healing up nicely. The days slip by much the same, struggles to engage with the day and get up, followed by meetings with friends, a bit of work, reading, trying to keep the house vaguely clean and tidy (that one’s a losing battle that I don’t much care about) a long term battle to get enough sleep and days and weeks slip by.
Then a perky notification drops into my blog comments – happy anniversary, a year since I started blogging. That’s a surprise, doesn’t seem that long and yet in the strange way time is elastic, seems a lot longer. Read through the year of blogs and many of the same themes emerge. Reluctance to accept the dramatic changes to my life since diagnosis of serious illness; roller coasters of energy, mostly low; delight and gratitude for the generosity and support of friends; attempts to build a new life from the wreckage of the old one; hope and despair in pretty equal measures; determination (not always possible) not to drown in self-pity; the power of culture in all its forms to cheer the soul; sadness at selling Mum’s house and her now being in a nursing home; attempts to start writing my memoir (failed); wrestling with paperwork (work in progress); rage at hobbling around and using a stick.
The blog itself helps enormously – firstly to chronicle the days and their events. When your world has slowed down to a pace a sloth would find too racy, you notice much more, small interactions with people take on new significance. So I missed the bus yesterday, because I can’t approach a run these days and so got talking to a homeless man outside the supermarket. It was freezing and he told me matter-of -factly that he’d slept in the street as he’d been too late for the hostel. No self-pity, he’d been on the streets for twenty three years. Then he asked me how I was. Seemed impertinent to moan, though I was feeling a bit moany, what with the cold weather biting my joints. So I just said I was a bit stiff. He had a book and we got into a real conversation about reading and literature and he had clearly read a lot and had some perceptive insights into what he read. The bus came and I gave him what change I had and was grateful for my warm coat and the money for the bus.
The blog also keeps my friends in day to day touch with what’s going on. So when I meet up with them and start on an anecdote, I always have to check whether they’ve seen the blog recently, as there’s nothing worse than repeating stories. And any dramas are quickly picked up with phone calls and texts.
But most of all it keeps me in touch with a part of myself that feels as though it has disappeared; the woman who loved to write. This is the closest I get these days as I don’t have the energy to work on anything bigger.
And for a writer, there’s no greater joy than seeing the magic of words appearing on the page.