Using A Wheelchair is Not The End of The World

I have used a wheelchair since I was about 15 which is around 11 years ago. Jesus Christ when did I get so old? Anyway, I've been using a wheelchair for a long time. I use it more now than when I first got one as my health has deteriorated and will continue to do so. So why is everyone so obsessed with getting me out of the chair and walking again? My wheelchair has not ruined my life. It has, in fact, made my life a million times better. I can get out of the house more, I have less pain when out and about and I get to experience life. My wheelchair has allowed me to have the life of an average 20ish girl instead of constantly being stuck in the house in too much pain.

(outfit details here)

Dear Chronic Illness Book

So I have some extremely exciting news. I'm in a book. I was contacted a while ago by the beyond lovely Pippa from Spoonie Survival Kits. She asked if I wanted to put an entry towards a book called Dear Chronic Illness. I don't think I have ever been as happy as I was when I was told that my entry had been selected for the book.

Chronic Illness Gift Guide

I'm not normally a gift guide person but when Nivea kindly sent me this cute Lip balm set I decided to do a little, affordable guide for those with chronic illnesses. This is basically some of the little things that make my life easier and would be such a cute gift.

- Nivea Lip Balm Gift Set* - Twilight Body Spray - Dear Chronic Illness Book

AiroSpring Pressure Relief Cushion

As a wheelchair user, a good cushion is one of the most important things. I mean if you're gonna be sat on your ass all day without moving much you want to be comfy. I've been in the market for a new cushion recently as my current one left me with irritated thighs over the extra hot summer months. It was like AiroSpring knew I needed help.

I was kindly sent the AiroSpring AS100 Pressure Relief Cushion* to try.

Curve Fashion Festival 2018: The Good, The Bad and The Future

As you may have seen on social media I attended The Curve Fashion Festival in Liverpool on the weekend and the accessibility was extremely poor. I wasn't sure whether to write a post on it as I have been in talks with the organisers about how we can make next year better. However, I thought it was important to highlight the issues and what needs to be changed on here so that more people can understand and learn from it.

Guilt and Chronic Illness

Hi my names Beth and I spend way too much of my time feeling guilty for things out of my control. Having a chronic illness affects me both physically and mentally. I spend a lot of my time in pain but the guilt makes me feel just as shit. My health means my life is pretty unpredictable and I have to spend way more time than I would like resting. Unfortunately, the world makes us feel guilty for not being busy/doing things with a solid 75% of our time.

Roma Sport Basketball Chair Fitting

I have been meaning to write this post for what seems like forever. Back in November I finally purchased my very own custom made basketball wheelchair from Roma Sport. I had a lot of support in raising the money and I am so grateful. I had a generous donation from my old primary school along with support from my Aunty & Uncle. My parents also helped a lot. I am so lucky to have them.

Chronic Illness Beauty Essentials

The other day when I was feeling extra crappy I was thinking about how much I loved certain products and how much easier they make my life. I thought I'd share my fave beauty products that are essential for me. There's hair products, the best moisturiser for crappy hands, miracle grow for nails and the only thing that has ever stopped me sweating like a pig. Quite a collection. 

The Little Things You Take For Granted

This isn't a please feel sorry for me post and it isn't having a go at people for taking these things for granted. I take things for granted that other people struggle with. It's human nature. I just wanted to let you in on my life with EDS and the little things I struggle with. On the outside you can't really tell that I'm quite ill and I'm pretty good at downplaying it much to my mums annoyance.

Stupid Ways I've Injured Myself

As most of you know, I have a condition called Ehlers Danlos Syndrome which means I am in constant pain and dislocate very easily. I'm pretty damn fragile. Due to that I injure myself in some pretty stupid ways so I thought I'd share some of them with you.

What Did You Do To Yourself?

I went into a shop the other day (to get brownie supplies) with my brother, both of us in wheelchairs wrestling with those ridiculous trolleys that attach to your chair. The woman on the checkout asked us what we'd done. It took me a while to process and realise she meant why were we in wheelchairs and not what we had done with our day. When I replied that we had a genetic condition she got super embarrassed and immediately blurted out that the weather was nice. Just a tad awkward.

The Downside to Wheelchairs

I love my wheelchair. Wilma is the love of my life and she makes my life so much easier. We do pretty much everything together and I don't know what I'd do without her. I've travelled, I got a degree, I get to go on days out. I couldn't have done any of this without my wheelchair. I have gained so much freedom by getting wheels. However, there are some downsides and I thought I'd share them with you today.

(Mermaid Sticker from Dorkface)

Disabled People do Smile

You would not believe the number of comments I have had in the past few weeks regarding me being disabled and smiling. How are they linked you ask? They're not. Pretty simple.

"So sorry that you have to use a wheelchair, but you look so happy and smiley"

"I would never have guessed that you were disabled, you're so happy"

"You don't look like a disabled person, you have such a gorgeous smile"

"I didn't realise you were ill because you smile"

These are seriously a few of the things I have had said to me over the last month and similar have been said to my mum about me.

My Daith Piercing

I have a few piercings and I love them. My nose is hands down my favourite piercing but I also have my helix, tragus, and 3 in each lobe. I'd wanted a new one for ages and was thinking about getting my daith done when everyone and their grandmas suddenly started raving about them for migraines. I was already planning on going to get my third lot of holes in my lobes when I had a week long migraine. I decided to take the plunge and get it done anyway. I mean even if it didn't work it would still look awesome.

Using Disabled People For Likes

It was recently brought to my attention that there was a page on facebook using a picture of me in my wheelchair to get likes (clearly I am that damn fabulous). The caption was along the lines of "Im in a wheelchair. Can I get a share on your timeline. If you do not ashamed of me" with some random emojis thrown in. It hurt my brain to read

LightStim for Pain

A few weeks ago I received a super lovely PR email from someone who had most definitely read my blog and wondered if I wanted to try the LightStim for Pain* to see if it would help. If you don't know I have a condition called Ehlers Danlos Syndrome (EDS) as well as Fibromyalgia which means I struggle with a lot of dislocations and a hell of a lot of pain. I'm in pain every day so I'll try most things to see if they can help in any way. I was pretty excited to give the LightStim a go especially after all the overdoing it I did moving house. 

Forever Living Aloe Heat Lotion

Aka heaven in a tube. No seriously I am so in love with this magical lotion. I was given a sample of the Forever Living Aloe Heat Lotion and instantly fell in love. It's very similar to deep heat but kinder to your skin. I react really badly to deep heat. It brings me out in a horrific itchy red rash and feels like my skin is actually burning so I could never use it. Such dark times.

When I realised the Aloe Heat Lotion smelt of deep heat I was a bit nervous about putting it on my skin. I used the majority of the sample on my brothers back when he was in hospital. For once I was sensible and tested a tiny patch on my arm and hoped for the best. The whole ward smelt of deep heat and my brother said it really helped and massive bonus points NO REACTION so we ordered a tube pronto.

The Kylie Jenner Wheelchair Shoot

If you didn't go near the internet yesterday you might not have heard about Kylie Jenners latest cover for Interview magazine with her in a gold wheelchair. There are so many reasons that I am not okay with this. I tweeted about it and my phone has not stopped since and I woke up to about a billion (slight exaggeration) notifications so I thought I'd expand for you here.

(Source)

As my tweet mentioned it angers me that there are so many disabled models out there who cannot get work modelling or in the fashion industry because of their disability and the fact that they use a wheelchair. Models of Diversity are trying to change this and are doing amazing work. However it is seen as perfectly okay for Kylie to just casually use one as a prop by the same people that are turning away actual disabled people. Wheelchairs are not props. 

Someone on twitter said that people are getting angry over Kylie but it's seen as fine to use able bodied actors to play disabled characters. I would just like to point out that this is also not okay and is one of my massive pet peeves. There are so many disabled actors out there. Use them to accurately portray disabled characters. Its insulting not to. 

 I know many people who are too self conscious to go out in public in their chairs because of people staring and even shouting abuse. Wheelchair users get treated as children or not even as people. I've been patted on the head and talked down to. People aim any questions at my mum or friends because they automatically assume they are my carers, because what disabled person actually has friends? I've been quizzed on my disability and even spat at by kids. Kylie doesn't have that to contend with when she decided to use one as a photo prop.

I also hate how sexualised the shoot was as the disabled community already struggles with being fetishised. It would seem that disabled bodies are only okay as long as they can be seen as sexual and something to be fetishised. The general public already seem to be obsessed with disabled people and if we can have sex. 

 I read somewhere (can't remember where now) that the wheelchair was supposed to symbolise the limitations Kylie faces due to her fame. Seriously there are no words. First off the limitations you face due to fame are nothing compared to the limitations disabled people face daily due to accessibility issues, pain, lack of understanding, discrimination etc. And secondly my wheelchair gave me my freedom back and has opened up the door for so many more opportunities. Yes okay I am limited due to the lack of accessibility in certain places but my chair has changed my life for the better. I have been able to go on holidays with friends, complete a degree, volunteer and actually leave the house. Before my chair I was stuck in bed because life just hurt too much and was too exhausting.

So in short, Disability is not a fashion statement you can just pick and choose when it suits you. This is not to say that wheelchair users aren't fashionable because we are so damn fabulous. A wheelchair is essential in many peoples lives and is not just a prop. Wheelchairs are not a symbol of limitations. If you want a wheelchair on the cover of your magazine use one of the many gorgeous disabled models out there. 

Beth...x

N:rem Foam Tablet Trial

I don't sleep well at all. In fact I'm pretty sure sleep hates me. I take forever to get to sleep and wake up a billion times during the night. Any sleep I do get is poor quality and not in the slightest restorative. Just one of the beautiful side effects of my chronic illness. For those of you who don't know I have Ehlers Danlos Syndrome and Fibromyalgia and my body is just a bundle of pain (with a hint of glitter).

I was contacted by N:rem asking if I wanted to give their 10 day foam tablet trial a go. As my sleep is so awful and I have tried every mattress in our house (we have a lot) and still can't get comfy there wasn't much to lose giving this a whirl.

The N:rem comfort trial* is for 10 days and consists of 5 tablets of different densities which include Firm, medium, soft & super soft. You then arrange these under your sheet depending on your needs.

Kitchen Essentials

I'm not allowed in the kitchen very often because that place is dangerous. So many things to injure myself on. Way too clumsy to be allowed in there. Buut there are a few things that I can use safely and mean I can actually eat if I'm ever left alone (not very often. I might starve to death or fall & die).

So I thought I'd share some extremely helpful kictchen stuff which is soo helpful for my fellow chronic illness warriors but also great for healthy people who just want an easier life.

Microwave Rice Cooker - Who can cook rice perfectly in a pan? Like is that actually a thing? I cant lift pans so thats my excuse for not being able to use them. Cook too much? Get stodgy rice? Cannot get it perfect? (Do I sound like a commercial yet?) This little pot of magic will save your life. It telss you how much rice and water to add & how long to microwave it for perfect rice. Its sooo easy even I can do it (although my flatmate did get it wrong once & we have no idea how). Now even if I've been abandoned and am too low on energy to life I can at least bung some rice in the microwave. 

Electric Tin Opener - If you don't have one of these in your life WHY NOT. Who has time to wrestle with manual tin openers. Do people still buy them? Is having enough grip to be able to use them humanly possible or just for gorillas? I took mine to uni & everyone used it, even the weird guy that never spoke to us. It took a while for them to understand it & trying to teach them was hilarious. It's not even difficult. Anyway I digress. Just get one. Change your life. 

Smoothie Maker - I go through periods of time where eating just doesn't happen. My stomach kicks up a fuss and refuses food because it's an angry lil shit. I'm pretty sure everyone & their gran has one of these now but they are so easy. Just whack in some frozen fruit & some liquid, blitz & then you have a kinda meal for when your stomach hates life. 

Microwave Egg Poacher - I've only recently started eating eggs in any way other than scrambled (and in cake obvs). But I am now in love with poached eggs and this little contraption means I don't have to stand by a pan and by me I mean my mum (love you mum). Just crack some eggs into it, microwave and ding poached eggs with zero hassle.

Soup Maker - If you saw my beautifully written Butternut squash soup recipe the other day you will know how much I love this machine. Seriously the best present I have ever got my mum. I am obsessed with soup at the moment. I have it nearly every day and I am still so in love with it. With this magical machine, you just chop up your veg, chuck it in with stock & turn it on. Then 21 mins later you have hot and smooth soupy goodness that is just delicious. Seriously I cannot big this machine up enough. My mum chucks it on when she's getting ready for work & then she takes hot soup with her for lunch (and puts mine aside for when Im actually wake isnt she a star). My only issue with it is its quite heavy but no ones perfect.

Helen also has a chronic pain cookbook which has so much helpful information  as well as easy things to prepare on bad days so you should definitely go and check that out.  

What are your must haves in the Kitchen?

Beth...x