The many moods of Martin M Bartelt

We say goodbye to Mum and head back to London from Suffolk earlier than intended as I have another audition: it's a real glut compared to how things usually go for me acting-wise. I met Sam from this company earlier in the year and they have invited me in to audition for a one-woman show which they are taking to Edinburgh. And, oh, joy – the audition is a pleasure! It knocks the bizarre experience of Macbeth into a top hat, or whatever the phrase is.

The audition is a load of fun – I kind of treat auditions as an end in themselves: it's great to get the job, but for me focusing on the sheer pleasure of auditioning makes the arbitrary nature of being an actor that bit more bearable. These guys are really nice and the writer even tells me I've brought something different out of the text for her. Well, if that's all I ever do for anyone creatively then I'm pretty happy with that.

Bartelt and I meet at Euston and travel to Manchester. Once there we get the Metrolink out to Bury and find our, frankly, gorgeous, B&B. Bartelt is not in the best of moods. Walking here from the centre of Bury with our stuff has been heavy weather. I often walk too fast for him sometimes he is nice about it, and others... he is not nice about that or anything else.

We have a picnic in our room and he can't decide whether he wants a lie down or not. He doesn't know whether he wants to eat or not. He knows he wants to be quite aggressive, though, no doubt about that. Oh, how tedious. We are stuck sharing the same room and there are several gigs still to go. I hope it is not going to be like this for the rest of the run.

Going to The Met helps a bit as it's a lovely place and includes dinner for us before the show. And what a dinner! Of course, we take pictures of both our food and then our empty plates. It also helps because we go into show mode: we are not us, we are Rebecca and Martin, but Bartelt is still rather snappy and difficult. I'm getting really worried, but decide not to let on. He does not like fuss.

There is an audience of 14. This might bring other performers down, but the amazing nature of this show ensures that 12 of those people stay to have a drink after the show, we all sit together, talking, sharing stories. A good friend of mine has come, an old friend of Kate's, my uncle's cousin. We talk and talk and talk. Someone gives us contacts for rural touring – she has, in fact, travelled 40 minutes to be at this show. She asks us whey the audience was so sparse. If we could answer that, we say, we'd be onto a winner.

The frustration of having a show which people seem to love, often against their own will, but not being able to get it to a wider audience is pretty big. But we have got to get used to it. Sometimes we sell out and sometimes the audiences are small and perfectly formed. It is what it is.

By the time we get back to our excellent B&B Bartelt is really rather difficult, tetchy, touchy and not much fun to communicate with. He snaps at me without very good reason at all, which I find pretty upsetting, but here we are stuck in the same room. I decide to just get on with some work before bed while he has what is, hopefully, a restorative doze, or even some restorative sleep.

So I am at my computer in our room when he says, “Please let it not be true”. I'm smarting from his snapping earlier; he's apologised, I've said that's okay, but it'll take me a while to reset my mood: we are both tired, having had the marvellous, but long, aftershow today. I don't have much interest in turning to look at him, I have virtually no interest in him at all, but I manage to – briefly – get over myself. I twist round.

He is sitting on his bed in his t-shirt and pants. He points to his leg. The infection is back, with a vengeance. He finished his antiobitics a few days ago: yet another round of antibiotics has not worked. Well, at least it explains how he's feeling, I say. He is clearly fit to kill. He will need to get medical attention pretty fast. It's a nasty bug which will just not lie down and he has a cow's valve in his heart, which makes him more than normally susceptible to infections. I know a bit about this from my work training doctors in communication skills. Because the valve is a foreign body bugs are attracted to it. Get an infection in your heart and you're in real danger: bits of the infection can fly off and give you a blood clot anywhere, for example, to your brain, giving you a stroke. An infection on your heart in the UK will mostly involve intravenous antibiotics and a six week stay in hospital. And it ain't over till it's over: that critter can fly off at any point. Oh, but a little bit of knowledge is a disturbing thing.

We make a tentative plan, from my point of view, to help me sleep. It is Wednesday. We are meant to be travelling to Chipping Norton Theatre tomorrow, together, via London, to perform the show tomorrow night. Knowing that he will not go to hospital – I don't even bother with that conversation - I suggest he comes to Chippy for the tech and then travels back to London, either to see my GP on Friday morning or to go straight to Casualty on the Thursday evening. People don't like hospitals, but Martin has now died four times and therefore has particularly bad associations with them. What is more, they do not seem able to help him as much as one would hope and he's forever meeting doctors who know less about his conditions and medication than does he.

I can see his fury and frustration. He has snapped at me, most uncharacteristic. We are very robust with one another, but gentle and respectful in our method of communication. He has been intolerant all day. When he is intolerant it is not because he is intolerant, although he can be staggeringly opinionated, impatient and damning (which is why I like him) but rather it's born of him being at his limit. He was tired on the train on the way up, he was not happy with his normal picnic food, he was not very switched on.

By the time the alarm goes off for breakfast, he is really feeling the infection. I can see his leg is even more swollen and red. Oh dear. I call the Ehlers-Danlos support group helpline and leave a message. It's weird having a helpline to call, but since Lincoln he has known the syndrome he has, so it's a new luxury.

We have a train to catch from Manchester in a few hours and show to do tonight. After breakfast he is becoming worried himself. He's one of those people who is so blessed with health problems that he is normally very dismissive, but I can see he is worried. I look Ehlers-Danlos up online and find that there is a clinic at the Northwick Park Hospital, on the outskirts of London. I call the number. A man picks up and pretty soon he is telling me he is a consultant with a special interest in Ehlers-Danlos: I hand the phone over to Bartelt. They talk.

Bartelt gets off the phone and tells me he ought to go to his GP. We laugh, but we have to decide whether to risk getting him back to London, or should we go straight to Casualty now? And if we do, what about the show tonight? Martin will soon be too unwell to move his stuff, which will slow us down considerably. It feels like we're trying to work out how to get back from the Antarctic without having to cut one of our legs off for sustinence. Thank you, universe, for the NHS. How much worse must this sort of thing be if you have to be insured but cannot afford it.

The interesting news from the consultant is that the foremost researcher into Ehlers-Danlos is based in Zurich, where Bartelt goes regularly for things medical. This is good news. We laugh harder.

My mobile rings. It's the Ehlers-Danlos support group calling back. I tell them the situation. She asks where my friend lives. I say Switzerland. There is a pause.

“Right. That's... a pity,” she says, “because they don't recognise it as a condition there.”

Why is life so like this so often? Why is the foremost research into this condition based in a country which doesn't even recognise it? We laugh a more empty laugh this time..... but it doesn't solve our problem. He is feeling worse and worse.

“Can you travel?”

“Yes.”

I don't think he should but I'm not going to endanger my life as well by challenging him. The B&B owner says the bus stop back to Manchester is outside the building, on the other side of the road. On the bus I tell him I can go to Chippy on my own, if necessary. I find the thought pretty frightening – I've never done the tech and, well, I can't tell what it'll look like as I'll be under the light. By my mate John runs Chippy and I'm sure they'll look after me.

At some point on the train journey back to London Martin finally asks if I would be okay to do the show on my own. I say, of course. And then suddenly there we are, standing outside Friends' House opposite Euston, me taking notes on all the terminology I'll need to talk about the tech. It's not just knowing what I want, it's being able to ask for it. We hug, take a photo of this, the strangest of all moments. He has seen every one of these shows, but he is so unwell he has to go, along the Euston Road, to Casualty. And me? I have to get back on a train, to Oxford this time.

Aboard I have plenty of time to worry that Bartelt is about to drop dead, that I will do a rubbish tech, a terrible show. I'm all alone. All I want to do is call my big sister for some support, to tell me I can do... whatever it is I need to do. You bastard, Kate, for dying and provoking me into making this ridiculous show, leaving me to this absurd way of life. I'm going to kill you when I see you.

Coming home

It's a curious thing to me that this hour-long show can pass in about an hour and be over. I have been looking forward to this, apart from all of my life, for six months or so, and then, there it is, gone. I expect that's what your wedding day is like, but with more expense, a bigger hangover and white goods to show for it.

I leave the stage for the dressing-room – normally, at the end of the show I go out into the bar. It's rather odd not heading for the audience. The audience are getting a drink to get them through the second half, I hope.

And the second half passes quickly too, with Chris talking to me about the experience of the show, why we made it, that kind of thing. There are a few questions from the audience and then we are in the bar and I'm talking to all sorts of folk, some of whom I don't know, but most of whom I can slot into a part of my life, my past. This is my very strange present.

It's not long before we're in the Dog and Partridge, me, Mum, cousin Ruth, Martin, Roger, aunt Zee and Miriam, whom I've not seen since we left university. She calls me Becky. Even though it's a name I am never known by and, well, sometimes react badly to, seeing Miriam and having her use it is actually very nice. She's always called me Becky.

She is a rather beautiful and brilliant woman. Miriam was actually good at Spanish at university – she had, after all, studied it before the course started - I was doing it from scratch. We had ended up on the Amnesty International committee, sharing the role of campaigns officer, if memory serves me. I do hate having responsibility on committees. There is so much I am not good at and, it turns out, a committee is the best place for me to show that to all and sundry. I am a confirmed second in command. I think Miriam and I acquitted ourselves okay, though, probably because she was half of the team. I certainly have fond memories of standing in Centenary Square in Birmingham trying to persuade passers-by to sign one petition or another to, you know, save one life or another. And Wednesday lunchtimes where anyone could drop in to write about a prisoner of conscience. I was the lazy activist.

So, here she is, and it's as if the years have not passed at all. One of the reasons for this is that she seems not to have aged at all, she's just as radiantly gorgeous as ever. We all sit round a table and talk loudly about everything. I think we're all pretty relieved. I had a wonderful time, but it is now over and that is okay.

Miriam and I get to talk to one another and she tells me her brother died a few years ago. We talk about the effects of that, what I refer to as the Smell of Death which surely exudes from a person in our situation. There's repellent and then there's grieving. I cannot believe that such a beautiful woman has not been snapped up, but then she's only beautiful up to a point. She is delightful, easy on the eye, but she is tainted by death. And, from her description of what she has been through, she is still struggling. The worst thing of all for me, though, is that with all we have in common (okay, I'm not radiantly beautiful, but apart from that) there is nothing I can really do to help. She is on her own and all I can do is observe and sympathise. We vow to actually see each other more, which will not be hard. We have passed each other a couple of times on the tube or on the escalators on the tube, over the past 15 years. That is all. How can we not have got together more when it is as if no time has passed at all since the day of our graduation? I guess we've both, in the words of Bob Dylan, been keeping on keeping on.

I nearly always sleep well, but tonight I sleep the sleep of... those who have got away with it.