A partner’s view of Ankylosing Spondylitis, or rather, a carer’s perspective

Well, I’m going to be honest, I have debated with myself on whether or not to write this post, but a friend said to me, “Thank you for your honesty in writing about your relationship, it was helpful.” And so I thought perhaps the subject deserved a whole post of its own, but I am being very brave on my own and my husband’s behalf when I share this. But then I know subjects like this, are the elephants in the room, we all have problems and they are the problems which are the hardest to talk about.

So then, here’s my story.

My husband, bless him, who I have been with for over 25 years now, and still love to distraction – he makes my stomach go all mushy even now – which I consider a real claim to success after 25 years – will freely admit, that he loves me more now than ever, but that he doesn’t like illness.

Well, then, the poor sod could not have picked a worse wife, when after two months of marriage she was knocked over by a car and has never recovered to be who she was beforehand.

The person he met, used to run on the beach and jump in the waves in the sea, while he stood back watching, used to dance through the whole Talking Heads ‘stop making sense video’ and when I couldn’t think of anymore dance moves just used to jog round the whole house in circles because I didn’t want to stop moving. The person he met, when it rained after days of really hot weather when we lived in the heart of the town went outside in the rain and span round and round getting wet.

And then I got ill, years ago, I barely remember that physically capable person. It was one of the saddest losses that when my daughter was young I couldn’t jump in the waves with her.

I have to say at this point though, my husband has endured and then come to terms with my illness as much as I have, this story is in the past for us.

In the beginning, because my AS started when I was knocked over by a car, he experienced unbearable grief because he thought he was going to lose me, and then, like me, he waited for my full recovery, hopefully, but it never came.

Then he went through a period of doubt, because he wasn’t in my body, so externally he watched and saw me moving well and then complaining of pain, and moving awkwardly, and during this time his frustration grew, because he wanted to get back to a ‘normal life’ and couldn’t. Then after a while, when the burdens of helping me around the home, increased tasks like painting and gardening, fell on him, his patience got thinner.

He’d grown up with illness around him in his family, and it is a little like he had a phobia, he couldn’t stand it. I think he learnt to hate me being ill (but not hate me). But at this time I was going through the same journey and hated being ill too. But we both hated the disease but couldn’t make it just go away.

It did cause arguments between us, of course it did. I think it would be abnormal, or people are saints, if burdens like this don’t cause arguments. He works long hours and to then have to come home and have more responsibilities, it isn’t fun, and the thing is, with AS, people become carers but don’t even recognise themselves as carers, because it isn’t full on. But I need him to lift saucepans, or take things in and out of the oven, or to cook tea/lunch completely if I can’t stand up at all.

Ironing, well, don’t get me on to that, I gave up doing that a long time ago. Things in our house get ironed when their worn.

Oh, then there is the fact he needs to carry the baskets of washing, and the hoover up and downstairs, so I just leave the things I need moving somewhere so he’ll see them.

Gradually over the years he started taking on more and more of the household chores, and then it came to a point when all these burdens became too much. This was the point, just before I found the Bath hospital, when I had got to a point I did little more than lay in agony on the sofa and went out on crutches, and was terrified of leaving the house on my own in case I felt too sick while I was out and wasn’t well enough to get home.

We had a blazing row, which broke my heart at the time, because I couldn’t just choose to get well, but I think he just needed to let off steam at the time. It could have been the end of us I guess, but I have always been very good at putting my head into other peoples’. Perhaps that’s the writer in me. But I stopped myself from thinking irrationally, from emotion only, and thought about things from his perspective.

He just could not understand how ill I felt, he wasn’t in my body going through it, and when he worked 13 hour days and then had to come home and do everything at home too, it had all just go too much for him. There was no escape from illness for him anymore than there was for me. We were locked into the curse of AS together.

We had a long heart to heart after this, and shared how we felt, I couldn’t just get better, but we worked out the things that would make life bearable, for both of us, together. Of course, as you already know, if you’ve been reading my blog, after this I was diagnosed, which made his understanding much easier, and things like our days out, which I spoke of last week, are things we have worked out to help us both cling to a feeling of normal life, and yes he still does most household duties, and doesn’t complain, and looks out for me, and knows I need to make sure I eat at the right time, and rest when I should, but within all this support he gives me, we make sure that what is necessary to maintain our good relationship is preserved, that we keep as much of a normal life as we can. Like going to the pub for a drink together, or walking the dog together. Just ensure the commas in life are still there, so life doesn’t feel so full of constant burdens, but of special moments too.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Illicit_LoveMy debut novel, Illicit Love, is now available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).  Sapphire Star Publishing are the publisher. If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

About janelark

a writer of authentic, passionate and emotional love stories
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2 Responses to A partner’s view of Ankylosing Spondylitis, or rather, a carer’s perspective

  1. Rene R says:

    Thank you for this post. my wife has IS, I would like to know if there is a group or something online for spouses of IS sufferers. I know your husbands frustrations and I’m glad we are not alone in this, I have a lot of questions regarding relationship issues and such. I would appreciate any sort of help, guidance, kind words Thank you so much

    • janelark says:

      Hi Rene, I don’t know if there are any groups for partners, but there are Facebook groups which you could join and ask, and perhaps through there discover an online Network. in the UK we do have general groups just for carers though, so that would be the other option would be to talk to a doctor about any local groups for carers.

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