Pragmatism: Sex and HD

HD has affected my sexuality. How do I write about that? I was rapacious for years and kept pestering my husband, thankfully not in front of the children.

These days, my focus has shifted to higher things; I spend my days googling meditation retreats and Ive started having regular yoga lessons. And I’m so busy with the children and endless appointments and permanently tired. I honestly wouldn’t care if I never had sex again.

This loss of libido has (conveniently) coincided with my husband moving out of our family home. This happened gradually by slow increments. And it’s hard to trace cause and effect.

My husband has moved to a houseboat on the Regents Canal. He comes back home a week at a time and he has a bedroom here. This unorthodox arrangement suits us very well. It means he can help me with the cooking, family logistics and childcare when he’s here. And he is still supporting me financially.

When I go to bed on my own in our massive superkingsize bed I’m fantasizing about a cute little bichon friese and a labour government.

J said ‘Why don’t you ever wear the nightdress dad bought you.’ This black lacy number from Agent Provocateur was a wedding anniversary present a few years ago.

Our relationship has changed and we are no longer lovers but supportive friends.

We went to visit my husbands boat on Saturday but forgot a boatwarming present. I ate (nearly) all  the florentines his best friend had bought him and I felt a familiar twinge of guilt. A and I were amused to see the pictures the previous occupant had nailed to the wall. The ironic retro covers of erotic novels from ( I would guess) the 1960s make this feel like a hipsters bachelor pad.

The boats are an attraction that draws people from all over the world. There are curious tourists along the towpath and A and I kept making eye contact with them when they peer in and not looking away.

I am resigned to never having sex again and I’m quite glad I don’t need to think about my appearance any more. My legs are unshaved and my eyebrows unthreaded. I’m going to save a fortune in maintenance. But I can’t quite bring myself to throw away that nightdress. I have a box on top of my wardrobe which contains some relics from my former life, including the tiara (yes a tiara!) I wore on my wedding day. I will put it there.

My friend said.. ‘You never know who you will meet,’ which is true. But I am realistic about this. Who would want to start a relationship with someone with a brain disease, especially a sexless one, unless they were mad themselves?

I was still fretting over florentines when I got home.

‘Don’t worry about it mum,’ A said. ‘I ate all his posh bread sticks.’

The lure of the florentine proved too much for me…

Cooking with Raven: My Signature Sausage and Mash

You can’t write a blog without pictures of food, can you? I have come across several food blogs that made me feel quite inadequate. As for Instagram…

Yesterday evening was a milestone, the first family meal I’ve made from scratch with neither my husband’s or my carer’s help. I hoped to do this without swearing but accepted that this might not be possible. (Incidentally, it wasn’t.)

Family mealtimes signify stability and I think  it’s important for the children that I keep them going, however hard it is. On the other hand, I  feel coerced by the food bloggers and food culture generally into acting not quite naturally.

This ambivalence is probably reflected in my cooking.

I pictured us all sitting round the kitchen table eating lovingly prepared food and chatting about current affairs. I chose something easy, thinking it would  build up my confidence. I settled on sausage and mash.  If I managed that, I could move onto spag bol or stir-fry. Then if I mastered the basics I could graduate to mild chicken curry and something with olives in from the BBC Good Food website.

As tea time approached I prepared myself mentally and tried to get organised. With HD that’s the most difficult part. I can’t work out the timings. I kept looking at the back of the packet of sausages but the information didn’t go in. It’s really hard to describe the cognitive process or lack of it. One minute I was peeling potatoes and chopping them (unevenly) then in the blink of an eye, the kitchen looked like this:

Cooking with Raven: a messy kitchen and not much food to be had.

There was very little to eat. The potatoes were out of synch with the sausages, which were out of synch with each other. At some point, I opened the oven to check how the sausages were doing and forgot to use oven gloves.

‘Fuck!’

You see? I told you I couldn’t guarantee not to swear. The meat sausages were undercooked and the veggie ones were charred and hard. When I drained the potatoes they disintegrated and slopped down the sink.

My friends struggle to understand.

‘Why are you trying to do this now?’ one said.

I explained I felt guilty for leaving my husband to cook the meals when he came back from work all those times. Now I want to do it but I can’t…

‘Forget about that. This isn’t you. Give them pasta pesto and ready meals. Everyone else does,’ another reassured.

 

My son J always gives my food a good review.

‘That was delicious mum,’ he said, flashing his full beam smile.

My daughter, A, older and wiser had a question instead:

 ‘Can I go and get chips from Pangs?’

‘Get enough for all of us,’ I said, admitting defeat and handing her a tenner.

Help

I’m quite glad that I don’t look ill (yet) but this has made it harder to convince social services that I need help with many everyday tasks. We did have a very good social worker, though, who found out about HD and they agreed to fund 12 hours a week of care, which I was, and still am, very grateful for.

In the early days I had people from agencies and we found one that specialized in neurological conditions. The carers I had were all very nice, but some of them were preoccupied with their own problems. I liked C but she hated being a carer and seemed to be going through a mid life crisis. She was clearly depressed and I felt guilty pointing this out to her manager.

These days, I feel guilty about having been horrible to my carers. HD made me angry and impatient with them and my upbringing made me think that housework was beneath me. I wanted them to do everything for me, which was beyond their remit and I complained about their cooking.

‘It’s not my job to look for your things,’ one of them told me.

I wanted my carers to cook and clean whilst I worked on my projects and maintained my intellectual identity. This seemed reasonable at the time. HD has made it hard for me to multi task, so cooking was difficult. And I kept breaking things and burning myself on the cooker. But I always hated cooking even when I was well. The recipe books on the shelf in the kitchen are well thumbed… I did try for a couple of years. I made a lot of mess but the results were hit and miss. My daughter remembers the ‘biscuit cake’ I made for her birthday. I blame my mother for making me think that learning how to boil an egg would lead to a life of domestic servitude. When I was growing up, she kept me out of the kitchen and we lived on Findus crispy pancakes and fishfingers.

There has been a paradigm shift. I want to work and keep my identity as a writer but not at someone else’s expense. It no longer seems fair or respectful to leave my new carer – who prefers to be called a PA – in the kitchen while I sit here at the computer. We found Ade on a Camden PA’s website and she is a trained counsellor and lover of vintage clothes. She has such a calm voice and her outfits brighten up my day.

I help her make the tea then we go out on outings or charity shop shopping. A few weeks ago, we saw a Coach bag in the window of a Salvation Army shop and we both wanted it. We tossed a coin for it and I lost. Ade said I can borrow it whenever I want. But I never go anywhere … my clothes all lie in state in my wardrobe. I keep spilling coffee and lunch on them, so I don’t dare to put them on. As I write, I am in  pale blue fleecy Uniqlo loungewear.

Our timeshare bag.

Ade helped me to organise my life and my to do lists. She helped me to create a daily routine gives wise counsel about my mid life crisis and relationship problems. With her help, I have been able to chart a course to the future and stop wallowing in self pity.

She has been with me for two years and she feels like a collaborator rather than a carer. Ade does help me look for things and I don’t feel guilty about asking her because the context is different.

I saw J – the carer I’d been horrible to – in the swimming pool the other day which was fortuitous. When I said sorry to her and I felt like a huge weight had been lifted from my shoulders.