... because life's too short to do anything ALL the time . Creativity and positivity are my "hiraeth"

Saturday, 31 March 2012

My Story...

This is the story I wrote for the Caerphilly Carer's Support Network Newsletter. 

Thought I might share ...

Steve and I first met and got together in 2005. At the time Steve was a serving member of the RAF regularly travelling across the world with his work, and loving every minute of it. It was while he was serving in northern Afghanistan in 2006 that he had a minor accident, with massive consequences.

Nearly two years later after an MRI, it was discovered that he had a broken vertebrae in his spine. The first operation on it worked for a very short period of time, the second - even shorter. Steve started having problems with his legs and, hearing and balance shortly after that.

April last year Steve's illness was so bad that he was hospitalised for the first time. This, for me was terrifying as he was such a big, independent, feisty, and handy bloke to have around. It was just a few months earlier that he had finally conceded to having a walking stick to help him get about. For him, that was the biggest loss of dignity. The first one.

We had to move as we had inadvertently bought the least suitable house we possibly could have. Of course we couldn't have known. Prior to Steve going in the first time I'd had to have started to do everything. I knew it was bad when he didn't argue with me about stopping driving. It became very difficult for me to do all the school runs, food, paperwork, driving, every day I would discover a new job that I hadn't thought of that I needed to take on. I felt very "put upon", very scared about the future and how I would cope, not to mention how Steve would do.

By the second hospital stay, I was doing things for him that I had never done for anyone before. I often thought "how on earth did I end up here?" and as the realisation that I was going to have to change my goals and expectations about my most personal and precious relationship. I couldn't longer expect the type of things my friends could.

I had to give up work, Steve couldn't be left alone for long periods and I had so much to do that it was impractical to carry on, I quickly realised that the overwhelming vast majority of people are terrified by disability, and it became quite clear that some of our friends and family couldn't cope with it. I found (find) this incredibly frustrating and sad because family and friends are supposed to pull together, but they don't always. Caring can be very isolating.

A few months ago, I was feeling very alone, unsupported practically and out of my depth. It would have been very easy to just get deeper into that state of mind more alone and frightened. It was at the same time that my best friend saw a poster advertising a carer's event that I had missed already. She took a photo of it on her phone, and I made contact with Carer's Support Services at roughly the same time as I made contact with Social Services. When I first rang through to Hayley, I was on the verge of tears, and biting my lip - things were really difficult. I agreed to go along to the up coming Carer's Pamper Day, despite the fact that I didn't really want to. I knew I just wasn't in the right frame of mind - precisely the time you need to act.

When the pamper day came, I dragged myself up, put my make up on (soon to be regretted) and made my way up. I stood in the car park and cried. What was I doing here? I should be at home, caring for Steve, or doing something for him. I'm not a carer - I'm just a wife with a husband who is disabled, I gathered together everything I emotionally had (not a lot) and walked in. I met the organising ladies that were very welcoming, and promptly burst into embarrassing floods of tears repeatedly through the session!

I don't mind telling you that some of the tears were relief. Speaking to someone who "gets it" was the most liberating experience I have had. Despite the different situations, essentially, we were all the same. None of us "wanted" to be caring, but none of us would change it for the world. Lots of ladies had forged long standing friendships by meeting through carer's groups, and were a tremendous amount of support for each other, making the role much more achievable and much less daunting. Men were carers too - it's not just women, men care also.

Currently, I've been to two carers events and I'm really looking forward to the third. I have new friends who are in the same boat as me, and things seem good. Steve is stable, life feels possible. It's so important to feel part of society and the community. I now feel much less guilty about leaving Steve for short periods, thanks to some advice I received from a fellow carer, and I feel much more in control. We all know the theory that if the carer falls everything collapses, and our first duty is to ourselves, to reach out for support and to maintain our well being. Of course our relationship has altered, but we're still dead happy, just not in the same way.

We all have to mange the burden, why not get the support you need?


  1. Beautifully written post. Thank you for sharing your story with us all.

  2. Thank you Laura Anne. I'm glad you felt compelled to leave me a comment; I love getting them x