Total Community Care - Specialists in spinal & neurological care

Providing bespoke care nationwide for clients with spinal injuries and neurological conditions

02 Jan

Sarah’s New Year Blog

Happy New Year everybody! So I am getting married this May (sounds scary saying that)! So I thought I would write a bit about my experience with relationships and how I felt about relationships, being paralysed since I was 18 months old, my struggles, and how I feel now.

Growing up paralysed from the neck down around kids the same age as me I feel was beneficial because, like me, they didn’t know any different; I was never seen as being different to them. I had my first boyfriend when I was 9 years old and we were together for 4 years. Then I started getting thoughts of “why does he want to be with me? I can’t even cope with this every day so how can I expect somebody else to?” So all through my teens/early 20s I wasn’t interested at all. I used to wear pads for bladder function etc. I was ok but I’d get low moods quite a lot. Sometimes I’d go on chat rooms online just for the chat and company, but I still thought I can’t do that to someone (because I always put others before myself). I then had an operation on my bladder called a Mitrofanoff which meant I wouldn’t need to wear pads anymore.  When I had the operation it resulted in quite serious complications, which meant I spent the majority of 2 years off and on in my (then) spinal unit, and at one point my family were told to prepare for the worst.

I had a lot of time to think in there and I’d hear patients who were newly injured saying things like “what if I get stared at?” and it inspired me to want to do more. After being in hospital that long, when I finally went home with mum and dad it was so strange. I felt like it wasn’t home anymore which really upset me, and I thought “what am I supposed to do now?” So I started studying a BSc Honours in Health and social care. I then decided that I wanted to move to Independent living because, although my family are amazing, they’d get stressed about if the supplies weren’t delivered, and because of the complications with my Mitrofanoff surgery I would bypass a lot and they’d get frustrated because of that. So I moved to Independent living in 2010.

I was with my first care company, and everything was fine until I moved into my own bungalow which was when the cracks started to show. I didn’t feel encouraged to live my life the way I wanted, which dragged me down and sent me into depression because it felt like nobody cared. I definitely thought at that point I’d never want somebody else to have to put up with all I do. I stopped my degree, I just wasn’t interested in anything. In the end I refused to go to any meetings and eventually I changed care companies. The second care company was better, but they still weren’t great though.  The fact that I knew how my care should be handled meant that I can tell people what to do, and the company would allow carers that hadn’t shadowed to come here, and I had to basically train them. But I finished my degree and was working for the National Autistic Society at the time. I was still depressed and so I booked myself a doctors appointment after work and sat and cried in front of the doctor.

Then in 2016 I found my now fiancé, Rich, on Plenty of Fish. I was about to come off it but saw him and thought “well he’s either going to be like all the rest or he’s not”. He actually said he’d seen me downtown a few years before. At first I did freak out thinking “why would he like me?” and we decided to meet but I kept thinking I might back out; until he said he’d wait for me. So then I thought “I better go now else he’ll be sitting there all day!” We’ve been together ever since, been through some tough times but I now don’t worry like I used to.

I’ve also found a care company which is in MY opinion (because I like people to make up their own minds) person centred, they try their best, understanding, they do listen, and in the previous care companies I’ve never had the Director come to visit when I’ve had an issue, and I personally think the involvement of everyone at TCC is what makes me say it’s the best care company I’ve been with.

So my advice to anyone who thought like I did: you shouldn’t care what people think, it’s your life and you are what matters. Stand by what you want and in terms of relationships, the right one will find you. I always say things happen for a reason and everything has a knock-on effect, so if I hadn’t had that operation (even though it does play up) all the rest wouldn’t of happened, and now I’m happier than I’ve ever been.

Thank you for reading!

Sarah x