When it first looked like my husband and I were heading down the road of romance I tried to put him off by telling him I wouldn’t live to 50, thinking why should I put us both through the inevitable turmoil of a relationship?  It wasn’t fair on either of us I thought as, like most pwcf, I was very good at not burdening other people, preferring to trundle along, snail like, under my load.  I still sometimes think I was right, when we’re stressed, when the future looks less than rosy, but to be honest I wouldn’t change a thing.  Well, maybe a couple of minor ones…

          Like how the way we give out information to family and friends differs – I shut it all in, tell on a need to know basis;  he thinks I shut people out, should be more open.  It sounds minor, but while I know I’m in pain, or feel uncomfortable because the person across the table’s smoking, I come across as rude and that bothers him as he tries to compensate for me.  I’m working on this one and maybe we can reach some middle ground so he doesn’t have to make up for my reticence to share.  A  case in hand is the in-laws – should they know more, when I don’t want them to?  Is it their right?

Like how sex takes a back seat to a good night’s sleep;  pain, fatigue, breathlessness, coughing, fear of haemoptysis, are all great wet blankets on an already reduced libido.  Luckily my husband works hard for a living as is often as tired as me come 9.00pm, so compromise can sometimes be found at weekends – day time escapades can be used to make the most of the times when I feel well.  I don’t think we do it as much as we used to but that’s marriage for you, not just CF. I think.

          Like how tempers get frayed more easily when you’re living with someone who doesn’t feel well a lot of the time.  My ‘unwellness’ frustrates and upsets my other half, just like it does me when he’s got a cold, and his temper has suffered for it.  I didn’t realise how frustrating I was as a ‘sickly person’ until recently, and it makes me want to ‘keep stuff in’ even more. However bottling things up in a marriage is a backwards step.  While I would love to protect him from it all, if he doesn’t know it now, the shock will be all the bigger when things get worse.  I think of it as a desensitisation process. I think he gets bored with it sometimes, but hell, I need to talk to someone and there’s a limit to the number of times I can phone my sis.

          Like how we can’t have kids.  It’s a very emotive subject in the CF community, and in a way I was lucky in being told an unequivocable No in terms of being able to carry a child with the liver complications I’ve got.  It made our decision easy, as I see a lot of girls deliberating about it in terms of their lungs, the baby’s future etc etc. It hurt for a while but we got a dog and got on with it, like a lot of other childless couples, and we try and ‘take delight’ in our friends children.  Yes the inverted commas are there to indicate its sometimes easier said than done – maybe I imagine the air of superiority, maybe I don’t.  I’d be lying if I said I’ve never resented not being able to have kids, and that I’ve never resented being left behind as everyone around us create their own families.  It’s my husband I really feel sorry for on this one though, and I’ve made him promise to get another dog once I’m gone.  It’s all I can suggest. 

          Like not knowing what the future holds for either of us.  I know my husband would love to do a lot of things in life, and hopefully he’ll do them later on, but for just now we have to do everything we can and dream about the rest. We do feel like we’re living on borrowed time though, and we want everything now, and often I think we’re hurrying everything through in order to accomplish stuff we want to do together.  On the positive side it a limited future means that we can spend what little money we do have now, and not have to worry about saving for school fees, moving up the property ladder, retirement cruise funds.  But it bothers us that at some point, assuming the unrelenting course of CF, everything will change hugely.   Apart from the weekly phone call from his mother in law of course – that will undoubtedly continue and he’s resigned himself to it. 

These are just a few of the challenges of married life, ones that have to be dealt with in my view.  It’s all too easy to ignore them and hope for the best, but I’ve found the best way of dealing with the various spectres of CF is to talk about them little and often, to let him help so he feels useful (that sounds patronising but it works), and to laugh about it.  It sounds callous but to be blasé about dying young and to joke about what songs I want at my funeral, helps to lighten the outlook.  I wouldn’t say it’s the best method for everyone and strangers often look at us askance but it’s worked so far.  The list of songs is long and requires an orchestra but it amuses us.  And we’ve got to take what we can from the situation.