Who’s the expert?

Routine appointment at the hospital today. Feels strange going back there as I’ve had a couple of months off for good behaviour. Normally take the bus, but I trade a tube journey for extra sleep. Turns out to be a mistake as the station is full of half termers and other lost souls who ebb and flow round the ticket barriers with grim determination but seemingly no knowledge of how the system works. So I get bashed by two suitcases, hustled on the escalator and am in a grumpy frame of mind by the time I get to the platform.

Consultation goes fine, nothing much to report. We discuss the possible scenarios to come, it’s good talking to someone who doesn’t mess about sugaring the pills of my future. Just sympathetic practicalities. He quizzes me on how life is now and I give him a very edited response. I’m now so au fait with the vocabulary of my illness that he wonders if I’m a medic. Ha!  He then tells me about his search for a decent care home for his very elderly mother, I empathise and turn into the consultant. It’s an odd moment, all his expertise leaves him just as lost with his Mum. I say it’s hard becoming the parent and his eyes fill with tears.

One of the many unexpected things about my situation is that it oftenopens all the emotional barriers, no time to mess about any more, allowing real moments of touching human exchange.

Bus back though, followed by cake and coffee at my favourite watering hole.

Ox to gnat

I used to have the constitution of an ox – could pretty much blitz my way through anything, including very late nights and getting up bright eyed for work the next day. I seemed to be able to breeze my way through colds and winter and could eat and drink pretty much anything (though I was once laid very low by a dodgy buffet in a Parisian restaurant, better to draw a quiet veil over that particular food poisoning) with no harmful effects.

Now my constitution is more of the gnat variety, with variable energy levels day to day and throughout the day. Have to eat small meals regularly, be careful of coughs and sneezes on buses as my immune system is pretty compromised and I seem to have lost the ability to breeze my way through anything very much. So effort one day means exhaustion the next.

But here’s the thing. If you’ve been an ox, it’s hard to recognise that you are now a gnat. You still feel like an ox, your psyche still tells you that you are an ox, no matter all the evidence to the contrary. So I still live my life as much as possible by ox rules, and then suffer the gnat consequences.

And still believe I’ll wake up one morning, turn over and find the ox is back. Now that night out would be quite something.

Reverse Cinderella

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.

Back on even keel

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.

Hungover porridge

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.