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September 2015

Sarah Willow

Autumn/Winter Fashion 2015 by Sarah Willow

By | Disability, Lifestyle, My story | One Comment

Let me just put this out there, if it was acceptable to leave the house in my pyjamas I would totally be doing that. The pyjama life is what I’m all about. However, as it’s distasteful for a 28 year old woman to wheel around Asda in a Spider-Man onesie, clothes are the next best thing.

I’ve said it before and I’ll say it again, I’m a winter baby so I’m glad the warmer months are over, not that the UK benefitted from a scorching month or even week but still, Autumn is just around the corner and I can happily go back to my chunky knits, bobble hats and biker boots.

I’m not really one to follow suit, I like black clothes, black bags, black shoes, black makes my inner Goth very happy. So, I was extremely pleased when I saw that Gothic Romance would be a fashion trend this A/W. Lace, high-necklines, black (did I mention black is my favourite colour?) vampy, sexiness and berry lipstick – if I could get on my hands and knees I would totally be bowing to the glory of this trend. The downside is long lace dresses or skirts – surely you’re going to freeze to death? I can’t regulate my temperature as it is and I’m always cold wheeling about in my chair so I doubt thin lace is going to be the warmest. I’ve also seen pictures of ruffled cuffs and it looked stunning on the model but put her in a self-propelling wheelchair and ask her not to tangled up in the spokes – she’d have to be a miracle worker. I can’t even wear those cute bobbly gloves without a disaster. And don’t get me started on wheeling in the rain.

There’s also going to be a throwback to the 80s, with shoulder pads, ruffles and lycra – I somehow think I’ll be steering clear of this one. I wouldn’t mind a structured shoulder on a blazer but I don’t think I’ll be going anywhere near lycra. I do suppose lycra would be perfect for a wheelchair user, there is literally no way your clothing could get caught on anything as you’ve had to practically spray-paint your outfit on.

You might also see capes on the high street this Fall, but they certainly won’t be on my back, I’m short and will look like I’m wearing a tent, a tent on wheels, not a good look. The difficult thing about dressing for your wheelchair is working out how clothing will look in a seated position. A cape would look great on a non-wheelchair user, it’d sit at the hip and they’d look like they walked off a Parisian catwalk; on a wheelchair user, it’d need to be tucked into the sides of the chair as not to get twisted up in the wheels and then as you’re wheeling yourself, the sides would unfurl and it’d be a whole lot of messing. If you take away one word of advice from this post – don’t wear a cape if you’re a wheelchair user. I’m envisioning it and it’s not pretty.

Lucky for me knitted dresses, cardigans and jumpers will always be a staple in the colder months. I’m a fan of a hooded Parka coat, a long one that can be tucked under my bum and cause no catastrophic entangling moments whilst keeping me warm, a chunky scarf that isn’t ridiculously long and shoved inside my coat, with straight/skinny jeans (you can never go wrong, I’ll sometimes wear tights underneath for extra warmth), and ankle boots. I think I’ll probably invest in a cute blanket this year as it gets really cold sitting in a wheelchair, and you can never have too many hats or gloves. I recommend leather gloves with a thermal lining, that way if you are caught out in the rain, your woolly gloves won’t soak up the rain and freeze your hands, the rain will slide right off the leather. I’ve recently invested in a fedora because I’m a fan of a statement hat, the only downside is wind, I can’t push myself and hold onto my hat unless I enjoy going round in circles, which I don’t. Chunky bobble hats, knitted beanies and the like will always be in fashion and keep your head warm. I tend to wear them pulled down over my ears and the hood of my coat over the top.

As a wheelchair user, there’s certain items of clothing that are simply a no-go area, no matter how pretty they are or how amazing you’d look, there’s absolutely no way you could pull off fringed clothing – well, you could pull it off, but you’d be pulling it off when it got caught in your wheels and ripped from your body. That wouldn’t look good, now would it?

You can always keep up with the latest fashion trend as long as you consider how the clothing will sit/fit once you’re in your chair. You don’t want to pay a fortune for that gorgeous cape but wear it in your wheelchair and rip a hole in it.

And remember, you’re not moving about as much so it’s always colder when in a wheelchair, stay wrapped up!

What will you be wearing this Autumn/Winter?

nathan

A Pain in the Butt: My story of having Crohn’s Disease!

By | Disability, Lifestyle | 2 Comments

Hi. My name is Nathan, I am 14 years old and I have Crohn’s disease. I was diagnosed with this when I was 9 years old. I have decided that I would like to try and write some blogs about my experiences because I think having Crohn’s can be lonely and I want to spread awareness.

I first knew something wasn’t right on the evening of my 9th birthday… I was sat watching TV (football as always) and all of a sudden I felt this sharp intense pain along the right side of my stomach. I was virtually in tears and shouting to my mum for help. She gave me some painkillers and hugged me on and off throughout the night when I kept waking up in pain. I started going to the toilet for a poo (or a number 2 or whatever you want to call it) way too often, sometimes over 20 times a day. There was blood in my poo and trust me when you are going that often it’s really uncomfortable! The toilet became my new home; I spent most of my time there. Mum stacked a pile of books in the corner for me and put a little radio in there – it’s the little things that make the difference! One day I was at a friend’s house (I had grown up with him and his little sister, as my mum is close to his mum) when I needed to GO. I was in there for hours and cried a little as it was so painful when Robyn who was about 3 at the time decided to drag her little stool into the bathroom, bring her packet of cookies and sit and keep me company! We laugh about that a lot now. It wasn’t long after this that a row of air fresheners mysteriously appeared in the toilet … to be fair, when I am in full flare up, even I can’t cope with the smell!

Mum had taken me to the doctors but the wait for a hospital appointment would take months. I very quickly deteriorated health wise. I lost a couple of stone in weight and was skin and bones. I had no energy so I couldn’t walk more than about 5 minutes at a time and this left me in a lot of pain. I wasn’t sleeping as I kept waking up all night with severe cramping. It got to the point that I was only able to go to school part time and wasn’t able to move far from the sofa at other times. I went from being fit and active, a normal young boy to almost like an old man. This was the hardest part for me. Mum did keep taking me to the hospital saying there was something not right with me but I felt like the doctors weren’t listening or appreciating what we were saying to them.

I was diagnosed in July 2010, only about 4 months after I became ill, but over 16 weeks deteriorating how quickly I was meant I was in a real state. Being given a diagnosis left me with mixed emotions. I was relieved in some ways because I thought that now they know what my condition is the doctors could treat me. It might sound silly but I also believe that some people didn’t believe or understand how ill I was. I hoped that having a name for it, people would be more understanding. On the other hand knowing that I would have this illness for the rest of my life made me feel depressed and worried about my future and if I would succeed in life. I didn’t really talk to anyone about my fears or concerns and bottled it all up. I felt that other people couldn’t understand how I felt and I thought that people wouldn’t accept me or see me the same way as they did before.

Not talking about my feelings was one of the worst decisions I made. I sunk even further into depression and even considered suicide as an easy way out from everything that was happening. I know it’s shocking that I felt that way when I was so young. I became an arse towards everyone – I was so angry about everything. I lost my temper all the time, breaking things and shouting horrible things and abuse at my mum. I know mum was really worried about me and in the end she went to the doctors and got me referred to see a psychologist. I was furious and didn’t want to go. The IBD nurse at my local hospital was great and really supported me, encouraging me to go to see the psychologist. I hated it there … the less said about that the better. I did start to feel better again afterwards but I don’t think it had anything to do with her. I think it was more about the fact that I started to feel a little healthier and this give me hope for the future.

Anyway that’s enough for one day. I have so much more to say so keep your eye out for another blog.

Nathan

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