Love and best wishes.

(Disclaimer: contains soppy sentimentalism and may cause feelings of nausea)

An ex boyfriend of mine got married last week. He is the only ex boyfriend I am still in touch with and it was lovely to see his joy. It does feel a little odd to talk about “ex-boyfriends” when you have been with the same person for 17 years but it led me down a path of reminiscence of past relationships and, on the whole, I enjoyed the nostalgia. This has been extra fuelled by watching the first series of Girls and wincing at mistakes made and melodrama played out in my own history.
My daughter asked me how you choose a husband and why I chose her daddy. I talked a little about what not to choose and what not to accept, but only a little because she is only nine. I also talked about how not to treat people, drawing on my own guilt at adolescent meanness. I told her about my first, kind and gentle boyfriend who gave good cuddles and whose mum always fed me up, with both food and love; I didn’t explain how he and his family provided me with a refuge from troubled times at home and I didn’t expand on how I abandoned him to go and smoke and drink and listen to The Levellers in fields.
She knows the simplistic answer that I left the next one (the now newly wed) because he “kissed another girl.” I haven’t yet told her about the unsustainability of a relationship built on 17 year old intensity and over-emotionalism (mine) combined with fiery academic ambition (mine) against a desire to explore different ways of living and simply just be chilled (very much his.)
And she knows there was a mean one. She doesn’t know, may never know, how mean but I fear that one day she will also put up with rubbish because of “love” as many of us do in our early 20s.
“So how did you know Daddy was going to be our Daddy?” At 23 I didn’t know. I knew he liked my hair, liked me being clever and liked being around me. In our 20s he proved himself not completely terrified of helping me cope with some of the remaining damage from a troubled childhood and in our 30s has supported me through postnatal depression and our new unpredictable challenge of MS.
The other day a friend on the brink of engagement asked me “what is good about being married?” It was the middle of the night and I was even less eloquent than normal, but what I wanted to answer was: it’s not the marriage per se, it’s the overwhelming feeling that you are in it together and that, whatever happens, you won’t be fighting it on your own. We are stronger together because of knowing that the other one is always willing to glue back the fragile pieces. Our future is uncertain – the past three years has been about getting used to the idea that a big relapse is coming, and then trying to live life to the full despite that. And when I read about what I should be doing/eating/thinking to combat the MS I simply think I have what I need to fight today’s fight – great friends and family, fulfilling work, fantastic kids, daily little injections and my Mr C.

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“Labels are for jam”

A hiatus in the blogging and the news is I feel amazing! Well, to be accurate, I felt amazing ten days ago but since then I have done four night shifts and come down with a rubbish cold/flu-type thing and have spent the day in bed shivering, sweating and feeling sorry for myself. But up until last week I felt fantastic. My fatigue has diminished and my legs are all sprightly and fully functioning. I have decluttered the house from top to bottom as it is on the market and finally got to the bottom of my email inbox. I even tackled the nemesis that was cannulation and seem to be getting better at it each day. So all was good until I received a letter from my new job telling me there was a “problem.”

It seems that full disclosure will get you a summons from the occupational health doctor to decide whether you are medically fit to practice. Despite reassurance from my own doctor, the medical director of the medical school and an invaluable gang of friends that it was all just a formality I had a mild panic that now, at this late stage, they would say “sorry, this career is not for you.” And when I panic I turn to the internet to find someone for whom it has all turned out OK. And when you turn to the MS pages you hear lots of stories of people forced from the workplace by unscrupulous bosses or by the progression of this largely mysterious illness. You also hear the word “disability” a great deal and my reaction to the word always takes me by surprise.

For a while I worked as a trainee paramedic. I LOVED driving ambulances but the paramedic life wasn’t for me: partly because I was  ill all the time (it was just before my first relapse), partly because I wanted to be able to wear anything but a green jumpsuit, and partly because I was not very good at the banter. I have friends who work in each of the emergency services and one thing that unites them all is their acceptance of “black humour” as a way of dealing with stressful and distressing situations. Me, as a liberal, lefty fan of political correctness was no good at this at all. Oddly though, it is something I seem to have dabbled with since diagnosis – I have “joked” that living right at the top of a hill will be good “when” I’m in a wheelchair as my husband will just have to take the brakes off and I’ll be at Sainsbury’s in no time. I have “quipped” about how lucky I am to technically be able to jump queues at Alton Towers and I am quick to “josh” about being a blue-badge holder when people try to get me to do things I am literally just too lazy to do. I’m not proud of these things and I don’t really understand why I say them because as soon as anyone implies I am disabled I get all affronted and cross.

It just seems like one step too far on the path to acceptance. I can accept the need for daily injections, I can accept the importance of regular exercise and trying to watch what I eat, I can accept that, on some days, I will need a stick, I can accept that, on many days, I need to remind the members of my household quite loudly that I can no longer hold three separate conversations at once (especially if one of them is about Minecraft), and I can accept (all be it massively begrudgingly) that I can no longer dance. But the thought of being told I could not even start doing the job I have now sacrificed so much for to train to do, and that the reason for that was my “disability” was too much. And my outraged rejection of the term was, in turn, a bit too much for the kind strangers on the internet who had offered me advice. “Not yet” came back the reply, “not yet.”

I have no real answers to this, no conclusions to be drawn, but I suspect it made me slightly ridiculous in my OH consultation yesterday as I loudly declared myself to be “very well,” despite the fact I have red eyes, a streaming nose and an unsightly cold sore which tell otherwise. I suspect, however, I was not the first person he has met struggling with definition – he spent a good ten minutes telling me that although he had to write that I was protected by the Disability Discrimination legislation he was in no way implying that I was disabled! He was a nice man. He cleared me as fully fit so now all I need to do is complete these last three weeks of medical school and it’s all systems go.

But tonight I am going to lounge around under a blanket getting Mr C to feed me biscuits and tea because I have upgraded this label of “cold” to “flu!” Maybe next year I will be further along the path and I will accept the flu jab they offer me….