A minor rant…plus ça change

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.


Power cut

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.

Time slips by

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.



Salad days

No not iceberg. Thinking that I needed to eat more veg today and suddenly had a memory of childhood summer meals in France. Our absolute favourite meal started with a local charentais melon (a heavenly perfume and orange sweetness) and we’d use the seeds to make bracelets and necklaces. Then the top main course was vegetables picked ourselves (under supervision from grand-mère) from the garden; carrots, potatoes, leeks and green beans simply boiled with a big knob of butter. No meat or fish. I can still taste the freshness – we mashed the carrots and potatoes and dipped the green beans in the butter, not strictly  bien élevé, but we had special dispensation, I suspect because the adults wanted to do the same.

Dessert was a local peach; I can still see Dad peeling his, he had the knack of being able to take the whole skin off in one go.

Salad days indeed.

The friends with no name

The man who cleans the windows down the street stopped me today and asked me what was wrong with my leg. I already knew he wasn’t English and this confirmed it – turned out he’s Portuguese and that he’s had a knee replacement so had a quasi-professional interest in other knee sufferers.

But what was really interesting about him is that it made me realise that I’ve known him, or rather of him for several years and have always nodded hello. But until today I didn’t know anything else about him.

It set me thinking about all the other people in my life that I see regularly but whose names and minutiae of their lives I’m wholly ignorant about. The young woman who serves me an excellent coffee three times a week, the manageress of the launderette I’ve ‘known’ for twenty years (I do know she likes Tenerife and doesn’t like Kit Kats or winter), the fellow parishioner I’ve seen at church for years but it’s too awkward now to ask her name.

Others who I chat to regularly for a couple of minutes; the cashier in Tesco, who is always friendly, the fishmonger in the market I buy mackerel from on a Saturday, the newsagent where I buy a daily paper and who looks even more tired than I do (but then he’s up at five am). Or even one off conversations that wallpaper the days of our lives – the woman in Argos today who looked surprised that I recognised Beyonce’s music and then we had a five minute chat about her twin pregnancy and the names she might choose.

I talk to these people more often and more regularly than my family and friends and should perhaps take a keener interest in their lives. Or maybe they are just as pleased to have me as a regular, pleasant staging post in their day, perhaps it’s the very not needing to go more into detail that makes these relationships work.

Good news on the broccoli front though, the only vegetable I loathe and detest, which is now being rationed in supermarkets.

Grizzle and smile

Had another bad night last night, no particular reason, they come as unexpected and unwelcome visitors. Listened to the radio, on and off, dozed and then took the other half of my sleeping pill about 2.30 before finally falling asleep.

So this morning slept in even later than usual after the meds and a nod to breakfast. Then needed some shopping so levered myself out of the house, still stiff as a board from the tumble a couple of days ago. Strong wind blowing and odd feeling that I might be blown off my feet like tumbleweed. A bit lightheaded and then realise it’s nearly three and I haven’t really eaten anything, so stop off for a sandwich and a coffee. The staff are more than usually conversational and cheerful and it has the opposite effect on me, I just want to quietly grizzle and moan.

Manage to contain it though and then the most delightful two year old and her nanny come and sit at my table. The little one has a mini cup of hot milk and chocolate and guzzles it down, getting a chocolate beard and moustache in the process. Nanny  is clearly happy to have an adult to chat to and we talk about nothing in particular. Little girl is fascinated by my stick and I explain I have a bad leg and need it to walk.

Her joy in life is completely infectious and as I head back to the shops, I’m grateful to have met her and her extraordinary life force. She watches me solemnly as I walk to the door and then waves and smiles goodbye.

It’s all in the details

A friend  drives me to the nearby launderette as since I’ve been ill, sheets etc have been mounting up and it’s too much for me to carry in the wheelie. I take the wheelie as well, full of clothes. My friend’s just bought a new car and drops me right outside. I’ve known the manageress for years and she darts out of her cubbyhole to say, ‘got a chauffeur now?’ I tell her I’m going up in the world and we laugh. She’s just back from Tenerife and looks bronzed and well.

While the wash is on my friend and I go to the pub next door and have a cup of tea and a plate of chips, great that pubs let you do that nowadays. We chat and catch up on all the gossip – she’s not been well these last months either so we compare coughs, tiredness and other symptoms. I show her the bruise that is colouring up nicely from my fall yesterday and she is suitably sympathetic. But then we pass straight to gossip, we’ve worked in comparable industries so know many of the same people and there’s nothing like a good catch up.

The laundry is done and folded, we stop for a paper on the way home and I reflect how lucky I am to have such staunch friends who can help with the everyday tasks that are so daunting when you are seriously ill. Another friend is coming to dinner, so I’ll twist her arm to help me wrestle with the duvet.

There’s nothing quite like clean bedding to make you feel all is right with the world.