Wheelchair Fashion: Rockabilly Cat Lady

Wheelchair Fashion: Rockabilly Cat Lady

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disability, fashion, lifestyle, ootd, plus size, retro, spring, vintage, Wheelchair, winter

I hope you don't mind but my cat kind of crashed the party a little for this ootd post. Of course you don't mind, she is totally adorable & cats do rule the internet after all. Of the many MANY things that prevented me from posting over January getting Renata (my cat) was one of them.
The last time I had a cat I was maybe 3? I don't remember her at all but I have been pestering my mum for a pet ever since I can remember. There were always so many good reasons why we couldn't get one that it didn't seem like it would ever be possible.... I guess I finally wore her down though because last month we went to the RSPCA & adopted Renata (formerly Lulu). She is a 9 year old former stray with a food allergy & the sweetest, most cuddly cat ever. She will literally snuggle up to anyone who has a lap spare & spends most of her day on the end of my footstool pushing me off 😊

I get the feeling I might be talking a little bit too much about a cat in what is supposed to be a wheelchair fashion post...that isn't even in a wheelchair. There are two very good reasons for that 1) it was -2°C & raining & 2) my chair is broken again. Also inside I can put my pjs back on as soon as I've finished. Which I did.

Not that I didn't like this outfit, super cute & really comfortable for being real people clothes, I especially like the jumper (collectif clothing £14.75 on sale, usually sizes 8-22). Now I usually don't pick things that aren't a deep scoop neck because I realised in high school that high necklines make me look like my boobs start at my chin & end at my waist (not a flattering look) & that I generally can't pull them off (otherwise I would have some of the miss fortune knitted tops). But 2016 was a year where I took a whole load of fashion risks, totally changing my style being one of them) & I'm trying to keep that doing in 2017 so I bought the top, it was on sale anyway so I wasn't loosing anything...I seriously love it. Cute top, cute print, flattering cut. Can be dressed down, can be dressed up. Light enough to layer but warm enough to wear on it's own. Would work in all seasons, especially spring/English summer though, you ever notice how nautical is in every year?

The skirt is also on sale btw, although I got it at full price. You know, usually I would regret that but I have gotten so much wear out of this already that I can't be mad about it you know? It's quite a long skirt, not really the length I would choose for wearing in my wheelchair usually, but it's not too long if you're not sitting down. The fabric is nice & heavy, it's cute with a petticoat & that sparkle is EVERYTHING! I don't particularly like the belt but that's a personal preference thing, not a problem with the belt.
Plus the zip is good, nice lining & the cut with the cool panelling....awesome.

The headband/scarf/whatever thing is also from collectif clothing. It's my first one, I've never had anything like it so I don't know how it stacks up to any others but it's nice & wide, long & very soft which makes it pretty multi-purpose. You can tie the bow any which way you like & I have to rate it just for that. It's a good introduction to the whole hair bow thing if nothing else.
I am totally hooked, I already ordered a whole bunch more on etsy.

So you don't think the whole look is from collectif clothing, the belt is from modcloth (too old for a link I'm afraid). I'm truly not sponsored by collectif clothing, their store is just in the UK & has a good range of well made clothing so when I am being brave I tend to pick them as I can always return something if I hate it. Only one return so far & it was my mistake not anything wrong with the item.

How was your January? Do you have any pets & any advice to a new pet servant owner?

P.S. I call this 'wheelchair fashion' because it is what I would have worn in my wheelchair if I'd been able to use it.

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Wheelchair Fashion: The Spirit of Autumn

Wheelchair Fashion: The Spirit of Autumn

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autumn, disability, fashion, lifestyle, ootd, plus size, retro, Wheelchair

The electronics on my wheelchair are still out of commission (they've found the problem though so hopefully I'll get it back soon) so I've been stuck in the house a lot. Unfortunately we have also ben having the roof fixed & it's driving me insane! Seriously, how much hammering does fixing the roof take? Also why do people feel the need to set off fireworks during the day? Or ever? I am getting the worst headaches...

Anyway, all of this combined meant that when I had an opportunity to leave the house I did so as fast as possible. As in it took me more than a week. More like two weeks. Eh, that's fast for me.

This is such a cool autumn look in my opinion; you can't really beat a good warm toned orange & red type look for autumn but this very different colour palette looks so fresh & yet warm. It's kind of like a Summer/Autumn transitional look but better. It's made by the skirt, the skirt is totally the best part of the whole outfit...
It's from lindy bop & whilst it's not the same quality as some of the other skirts I have, the print totally makes up for it. It also doesn't work quite as well with my petticoat...eh, it's still totally cute & it looks adorable with my pinup girl clothing pink polka dot top (limited edition & no longer available) & this olive green cardigan (sizes XS-4XL $29.99).

Unfortunately the skirt is no longer available. I should probably check these things before I take outfit photos...

(My obligatory throw leaves in the air autumn photo. There must be a knack to this cause I was rubbish at it lol)

I don't want to talk too much about the skirt or the top since they are out of stock & unlikely to come back in. I'm pretty sure they changed the shape of the pin up girl clothing peasant top & it doesn't sit quite right on me anymore. It could just be this one but I'm nervous to buy any others...
The fabric on this skirt is also super slippery & kept sliding around, plus I was half way in between two sizes which didn't help....
Also I got the cardigan in my actual size (a 2XL) & it is way too big on me, I should have got it in a 1XL....basically this outfit was a comedy of errors that only worked on pure luck & stubbornness apparently :)

The necklace is another etsy find from ages ago, I am incredibly marginally obsessed with trees. I feel like trees are magic, I never feel like I am really breathing unless I am around trees & I could swear that trees are more aware than we give them credit for. It might be a little crazy but when I dot sick & couldn't go out as much I got to feel cut off. I live in a terraced house in an area where the only greenery is the tiny amount we can grow in our yard. There isn't a tree anywhere within sight, even when I used to be in the attic I couldn't see any trees. So I started buying these necklaces, I have quite a collection at this point & this is one of my favourites :)
The lady who makes them is on etsy, the shop isn't running right now. It's worth waiting but if you can't there are lots of imitations around :)

This is the photo the name of the post comes from (the one above the bit of text). When we were out & my mum was taking photos she said something along the lines of "You look like the spirit of autumn."
My mum is the best, for every ten times she manages to say the exact wrong thing (accidentally & because she has no tact) there is at least one time where she says something really awesome that makes me feel kick ass for the rest of the week. This was totally one of the second times & it was an awesome name for a blog post.

Honestly I think the last post was more a spirit of autumn post but it's still a good name to use. Plus autumn is 100% the season I would like to be the spirit of.

What's your favourite autumn colour palette? Do you have one? Do you believe in magic or that anything specific has magic like properties? If you were the spirit of a season which season would you pick? And how on earth does the throwing leaves in the air picture work? :)

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Wheelchair Fashion: The Golden Leaves of Lothlorien

Wheelchair Fashion: The Golden Leaves of Lothlorien

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disability, fashion, lifestyle, ootd, plus size, retro, vintage, Wheelchair

Of the two in-accuracies in the title I'm not sure if I'm more bummed about these picture not really being in a wheelchair or not really being in Lothlorien...
Actually that's not true. I'm more bummed about not being in my wheelchair, especially after taking these photos. I HATE mobility scooters; why is the suspension always terrible & why is the turning so unnecessarily confusing? It's weird though, people notice me more in a mobility scooter than in my wheelchair... I still hate the thrice cursed things.

My wheelchair is out of commission atm & I feel like I lost a limb & an old friend all in one. Once it's repaired I should probably get a proper name for her, I've had her for 3 years now I think she's earned one. Especially if they don't have to replace the main control unit 'cause that would totally suck.

I was determined to get out to take outfit photos despite not having my chair. I mean, technically, I have the body just not the electrical part so I can use the manual wheels like I have in the past but my mum refuses to push me more than a few metres (especially if I'm going to do outfit photos) because I'm apparently 'fussy' which I don't think is that unreasonable but w/e....plus only one of the breaks works for the manual wheels so it's not really practical when taking outfit photos... Where was I?

Right, I was determined to take outfit photos. Autumn doesn't last that long, especially in the north of England (it's pretty much just October) & it rains like half the time so there is a very small window of time & since Autumn outfits are the most fun it's always kind of a rush to get a few taken. So earlier this week I braved mobility scooter hell (it's not literally hell but it really did f*ck up my hips) & went out to Harlow Carr Gardens near Harrogate to get my pictures taken.

Quick aside, if you are in Yorkshire & you want a nice, spoonie friendly day out Harlow Carr is pretty good. You can book mobility scooters, there is a wheelchair accessible path & the café is a Betty's so pretty awesome. The café can get pretty loud & the Betty's shop is almost impossible to navigate around in a wheelchair but there is an outdoor betty's in the gardens which doesn't tend to get so loud (less selection though) & you can buy most stuff from the shop if you have someone with you willing to brave the queues...

I am so in love with this outfit, every part of it worked so perfectly :) I ordered the cardigan to replace an old & much loved jumper in almost the exact same colour (the only shade of orange I can wear). I was hoping it would be okay but it's actually magic. Seriously. I think it's the cut; normally I find the neckline of cardigans to be too boxy but this one is just stunning! I think I'm going to have to get it in S-every colour honestly. It's the Charter School Cardigan in Ginger from Modcloth (XS-4XL, $39.99) & seems to run true to size although I got a 1XL & it totally worked for me so I guess check the size chart... It's also super soft & warm despite being quite thin :)

Other than the cardigan, the rest are wardrobe staples for me. The skirt is the first (& only) pin-up girl clothing skirt I own. I got it from Deadly is the Female last year & was so happy, it's still the best pin-up skirt I own but it was obviously limited edition & unavailable now except in tiny sizes :( I hope they do more prints like this though cause I love them so much :)
The top is also pinup girl clothing, it's the white peasant top & is (thankfully) available all the time (XS-4XL $56). The peasant tops from pinup girl clothing are a total basic in my wardrobe, I think I have 5...

The tights are in the shade conker from M&S (S-XL £2.50), the shoes are my old Burgandy B.A.I.T shoes & the necklace is from THIS etsy seller. I recommend looking at all their stuff because it's really cool :)

What's your favourite season for clothes? Also wheelchair or mobility scooter? And most importantly do you like the new hair colour? lol
Happy autumn everyone.

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Spoonie Survival Kit: Spoonie Friendly Bedding

Spoonie Survival Kit: Spoonie Friendly Bedding

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chronically ill, disability, lifestyle, M.E., spoonie

Being a spoonie seems to bleed over into every part of our lives. Things that you barely even thought about as a non-spoonie become complicated, time consuming, often costly decisions. Everything from what to eat to what kind of soap to use or what kind of light bulbs you have in your house become minefields, balancing symptoms with sensitivities, budget & about 100 other things.
When you are in bed you just want to get the best possible rest you can & not deal with anything, which can be hard when your duvet makes you feel like you are being slowly crushed under a matt of (incredibly heavy) nettles...
There are lots of things spoonie friendly bedding needs to do (every spoonie has different requirements) but as the nights are starting to draw in & it gets colder I thought I'd post some of my favourites in the hopes they spare people the sleepless nights I had under my old winter duvet (double bed sized, unbelievably heavy & feather filled! lets just say it did NOT work for me).

Heated Blanket

Last winter, or possibly the winter before (they are all kind of a mush) I found my symptoms had progressed to the point where my winter duvet was too heavy for me to cope with. Unfortunately however it was winter & in Yorkshire that means the nights get COLD. Even wearing layers (including a jumper) to bed I was too cold to sleep.  Luckily for me my mum is something of a genius & thought of using my heated blanket at night (which I have to be honest, totally freaked me out at first). Totally works; when it gets really cold I layer it up with my spring/summer duvet but most of the time I just put it on a low-ish setting & sleep like a baby.
I've had a couple of heated blankets before the one I have now, one of which was really narrow & wouldn't have worked for this at all & one of which was itch-y & died on me (not a great combination). The one that I recommend the most is this one from amazon. It's not the cheapest ever - ~£50 - but it's so big & comfortable I'm totally convinced it's worth it & it's about the same price as good duvet.

Silk Filled Duvet

This is a bit of an extravagance if I'm honest, although I'm not sure how I'd cope without it. You know how I mentioned my mum is a bit of a genius? She's also a bit obsessed with finding things that will make my life easier, which is both a blessing & a curse sometimes :) This is one of her finds & for all that I thought it was just her being crazy when she first mentioned it I'm really glad she found it. Weight of my duvet is a massive issue for me, I'm not sure if that is a common symptom or just something I get but it's something I really struggle with, especially when the surface level pain (pain in my skin rather than pain in muscles or bones or organs w/e) is especially bad & this silk filled duvet is less than half the weight of the duvet I had before & is slightly warmer.
As I said, the duvet is a bit of an extravagance, I have a medium weight single duvet & it cost £145 (which I'm glad I didn't know when my mum bought it cause I would have freaked out) but it really does make a massive difference & it's not at all itchy which is also amazing. Possibly a good thing to ask Father Christmas for? Or do what my brother does & tell everyone you just want money because you are saving up for something & then get this ^^

Sheets & Pillow Cases

I wish I could tell you guys what kind of fabric would not trigger your touch sensitivity but unfortunately I'm pretty sure that depends on your body. My brother has dermographia (his body makes too much histamine & he gets unbelievably itchy) & prefers jersey cotton bedding. I'm mostly okay as long as my bedding is cotton although I have silk pillowcases for a number of reasons (silk is kinder to your skin & hair, but I also used to get rashes & spots under my skin when I uses cotton pillowcases that I don't get anymore & it doesn't burn even on really bad days).

I have to include my bottom sheet, another one of my mum's finds, mostly because it saves me from throttling my mum. I have a profiling bed (one of the only house adaptations the council could help me with) & I tend to toss & turn a lot in my sleep - I did before I got sick but I'm a LOT worse now - & most bottom sheets elastic can't keep them in place under that kind of stress. I don't really care but it really bugs my mum. I'd be laying in bed, barely able to move & my mum would start fidgeting with the bottom sheet, trying to get it tucked back under the mattress. The bottom sheet I currently have seems to hold up a lot better & is very comfortable (which is always a bonus).

Sorry for mentioning my mum so much but things like this are where she tends to excel :)

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Wheelchair Fashion: One Skirt, Three Ways

Wheelchair Fashion: One Skirt, Three Ways

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disability, fashion, lifestyle, ootd, plus size, retro, summer, vintage, Wheelchair

One of the things about being a spoonie fashion blogger is that I rarely let myself wear the same outfit twice. I don't get out that often so I aim to get photos taken every time. I don't but I aim to :)
One of the hard parts though is thinking of different ways to put together the pieces I have...
That's pretty much how I came up with this post. It's something I've wanted to do for years but never been able to put together, hopefully it will be something I'll be able to do semi-regularly from now on. No promises though :)

I got this skirt from Modcloth, I don't know who made it though. It's nice but it has a super cheap zip which sucks, it's a mega nuisance. The gingham is adorable though & it's a good basic skirt, literally goes with everything.

These photos were taken back in spring when there were bluebells out in the woods, except in the woods in the middle of Leeds (there is this cool old wood in the middle of Leeds for like no reason. It used to get MASSES of bluebells but doesn't seem to get as many these days). We'd gone out literally just so I could get away from my foster brother who was driving me crazy & ended up finding a patch of bluebells in my favourite park.
So, the top is from Pin Up Girl Clothing, the belt is from Hell Bunny & the hat + necklace are old, like 5 or 6 years at least.

I wanted one of these outfits to be very different to my usual style, something I would never normally wear. This outfit is a mixture of my style back in high school (the necklace & t-shirt date back to then) & my style now. When I was looking at the photos I couldn't help but laugh at how much it looks just like both the other outfits. Honestly though if you find a silhouette that works for you don't feel shy about sticking with it, even if this post didn't show very different ways of wearing the skirt it at least shows how different you can make the exact same outfit look lol

I even took these photos in front of my old haunt in Leeds. Back when I was in high school Leeds was full of goths & emos & moshers who all hung around the corn exchange :) They cleaned the corn exchange up a while back & killed the whole scene but that was me back in the day. I wore corsets & stripe-y tights, lots of black, tutu skirts & red lipstick...I kind of wish I had photos of me back in the day, it's a whole other lifetime for me ^^

I've already posted this outfit so I won't go into great detail but yeah, like I said when I posted it, the top is a little outside of my comfort zone (a very narrow colour palette somewhere in the region of muted, grey toned colours between pink & green - pink, purple, blue & green - with white & tan as neutrals + minimal black....).
I included this because it made me lol how different the outfit looks with just a change of colours & accessories, I mean all the components are basically the same. I am wearing a peasant top, a belt & the same skirt & yet unless I'm looking at them side by side I think of them as very different outfits...

So, one basic worn three ways... Is this a style of post you'd like to see again? How would you style the skirt? What basics do you wear all the time?

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Pokémon Go: A Spoonie's Guide

Pokémon Go: A Spoonie's Guide

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accessibility, chronically ill, disability, geek, lifestyle, nerd, random

Pokémon Go is everywhere & if it's not something you are into I can imagine you must be really bored by now.
I've played pokemon since it was on gameboy colour (mine was the purple see through gameboy colour & this craze is magical for me. I have to admit I feel like I'm back in primary school playing Pokémon in the playground with my friends.

Unfortunately my body has changed (in more ways than one) & I don't have as much energy as I did back then. That would be true even if I wasn't chronically ill but it's ridiculously apparent with my chronic illness.
I'm still Pokémon mad though so I kind of went nuts. I went out Pokémon hunting within hours of the game officially releasing in the UK. And then I went out the next day. And the next. And then my lips went blue & I found myself unable to sit up.... Funny how that was bound to happen.

I've seen a lot of things about how difficult Pokémon go is for people with disabilities & I'm here to tell you it is all true. I'm also here to tell you that all is not lost. Pokémon go is still totally playable, you've just got to play smart.

1. Reconnaissance. If you know anyone else who plays the game, get them to find you places that are easily accessible for you near a gym/Poké stop or where there are good Pokémon. Examples are in cafes or car parks, anywhere you can sit & rest whilst you discover Pokémon.
2. Parks are your friend. I've only been to my local park so far but I've read lots & parks are the key. Especially if the park has lots of gyms & Poké Stops & ideally some kind of water. Places like this spawn masses more Pokémon than anywhere else & usually more rares.
3. Evenings. Evenings have lower light, less people (mostly) & often better Pokémon, or at least less people to catch them.
4. Use incense & lures. Incense is used on you & draws local Pokémon to you, useful but not amazing. Lures are used on Poké stops & draw Pokémon towards it. Both of these are handy if you are in a wheelchair or have low mobility because you can just set them off & the Pokémon come to you rather than the other way around. Super handy.
5. Use lucky eggs. If you are not going to be able to play the game much you want to make the most of every opportunity & lucky eggs do that. Lucky eggs double your XP & the more you level up, the better the Pokémon you catch are.
6. Turn off AR. One of the best parts of Pokémon Go is that you can see the Pokémon 'in real life' via the augmented reality feature. The only problem is that this can make catching Pokémon harder & it can be more jarring and/or exhausting. Turning it off can help your energy last longer.
7. Know your limits. My biggest tip is to remember what you know about your body. If you know that you can't go out when it is bright out, or that you can't cope with more than one outing a week DON'T do it, even if there is a Squirtle in the area. It's not worth it. Although maybe take note of where it was? (Seriously though, somewhere near me is a Squirtle spawing place & it is driving me insane that I can't go out to catch them)

The hardest part (in my opinion) are eggs which only hatch after you walk a certain distance. My answer? Dogs, younger siblings or very understanding carers. Strap your phone to any of the above as they wander around the house & it won't take too long for your egg to hatch :)

Finally remember that Pokémon turn up everywhere & that if you are patient they will eventually come to you :)

 

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Wheelchair Fashion: The Flower Queen's Daughter

Wheelchair Fashion: The Flower Queen's Daughter

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chronically ill, disability, fashion, lifestyle, M.E., ootd, plus size, retro, spring, summer, team princess, vintage, Wheelchair

Do you guys remember last year when I took part in the team princess M.E. awareness event organised by Queenie Sian? Well it's coming up to M.E. awareness month again & I'm taking part again.

The idea behind team princess is that we M.E. sufferers have a lot in common with the fairy tale princess, many of us are trapped in our castles, sleeping for a thousand years or 'just' cursed. There isn't a cure for M.E. or even a treatment but you can help with our isolation.

Like last year I'm not having a individual team princess fundraising page but the charity I am recommending is the Smile for M.E. charity who specialise in sending happy mail to M.E. sufferers, I can't even explain how much of a difference happy mail can make.
You could also donate to Gemma who is raising money for a wheelchair she desperately needs.

On to the look. So I had this crazy idea that it would be super cute to name all my Team Princess looks after fairy tale princesses & not just the Disney ones but cool, lesser known fairy tale princesses. After a lot more reading than I really had the energy for (fairy tales are really interesting, particularly the Eastern European & Scandinavian ones) I realised that fairy tale princesses are mostly pretty lame, they barely do anything in the stories! However I did find the story of the Flower Queen's Daughter which I thought totally fit with this look. There is a bit of a Persephone thing going on at the end of this story, like the Flower Queen's Daughter brings Summer with her or something & in this dress I literally feel like I am wearing Summer. If I looked behind me & there were flowers growing in my tire tracks I wouldn't even be surprised.



So the dress was my reward to myself for coping with some pretty shitty body & life stuff & I am so in love with it. I was kind of convinced that it would be something I wore maybe once (the pattern is kind of out there for me) but I have already worn it 3 times & I've only had it a few weeks! I've even worn it when I wasn't leaving the house & I usually just stay in pjs so I'm not wasting energy.

If you are wondering where to get it, this is the Bernie Dexter Paris Dress is Serenity Walk & you can get it from either the brand's website or Unique Vintage (where I got it). I got it in the largest size just so I was certain it would fit & I would actually say it was a tiny bit large on me (only just) despite having a waist of 41 inches & my waist being that & bigger depending on the day. It makes it super comfortable so I guess it depends on how you want it to fit.

The skirt is slightly shorter than my other vintage inspired pieces hence my petticoat showing at the bottom (& at the side apparently, I wish I'd noticed that when we were taking photos!). I actually love being able to show off the bottom of my petticoat, this malco modes petticoat has the most amazing detailed edge & I never thought I'd get to show it off ^^

The straps on this dress are wide enough to cover bra straps if you want to wear it without a cardigan. I choose not to because my I'm pretty sure my arms are pale enough to glitter in the sunlight...plus it is Yorkshire & it rarely gets warm enough to go without sleeves of some kind :)



I could write an essay about why I love this dress, seriously there are so many amazing things about it, there are pockets, the details are so pretty, it's is so comfortable & I feel like a ray of sunshine in it. The ONLY thing I don't like is the zip is in the back but you can't have everything lol. (Did I just spend a whole blog post talking about a dress? I'm super weird lol)

What is your favourite fairy tale, Disney or story book princess?
I'm not much of one for princess stories, my favourite fairy tale princes was the one in East of the Sun, West of the Moon, my favourite Disney princes is Princess Dot in A Bug's Life & my favourite story book princess is Princess Meryl in the Two Princesses of Barmarre by Gail Carson Levine.
(My taste in princesses may be a little unconventional).

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The Trouble with Words

The Trouble with Words

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chronically ill, disability, lifestyle, M.E., random

One of the things with my M.E. that affects me the most emotionally is the way I struggle with language. It affects me every day, I struggle to comment on friends posts, or write posts of my own. I struggle to remember things I need to do that involve writing more than I struggle to remember anything else & I get tired fastest when reading, writing or thinking word/number based things through.

A long time ago, when I was still coming to terms with my M.E. & was trying to finish my A-Levels I remember having a moment when I could physically feel my thoughts taking longer. I can't explain it but it was like my thoughts were driving through my brain & the motorway was closed so they were having to take side roads. When I focused it was almost like I could feel the part of my brain that wasn't working.

As my M.E. has progressed I started to find creative things much easier than I found analytical things. I started to process things visually rather than analytically in a way that was totally foreign to how I was before. I had always dreamt in words (no pictures at all) & suddenly my dreams were totally immersive & in full colour. I used to think everything in words & make lightning fast connections from one concept to another in a way I can't even describe any more. I remember it, I know it is missing. It was the thing that made my brain my brain & no body else's & with out it my world feels really slow & dull & I feel really detached from it.

I used to love writing, it was my one creative talent, & I was pretty good at it. Now I put off writing tasks until the last minute because like a kid with a piece of maths homework. I know it will be hard, tiring & I know it won't be any good however long I work on it.

I have a pile of cards on my desk I want to send to friends & I've been putting it off since January because I'm so scared of sitting down to write them. I have so so SO many post I want to write, some that would really mean a lot to me, that I just can't seem to get done because I just can't find any words to say what I am trying to say. I am pushing myself away from the spoonie community partly because of my crippling shyness but also because talking to them would mean forming rational sentences regularly.

I know part of my problem at this point is that I know I can't write the posts or the cards or w/e & so I fail because I know I will but there is a real problem at the base of it & it's a problem that is getting harder all the time. I can't find anyway to fix it but I guess if you guys know about it I might not feel so embarrassed about the gibberish I write & say.

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Wheelchair Fashion: Mint Leaves

Wheelchair Fashion: Mint Leaves

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disability, fashion, lifestyle, retro, spring, summer, vintage, Wheelchair

Hello everyone. I've had the worst cold for the past few weeks, if a hideous cough, tonsillitis, an ear infection, a fever & extra fatigue count as a cold. Worse still my Mum (who is my primary carer) also caught it so we've had an incredibly dull & tiring few weeks...

These pictures were taken probably two days before the cold started when we managed to have a day out at Harlow Carr Gardens in Harrogate. It was seriously windy & generally not very nice weather but in the green house it was actually quite lovely, warm & full of spring flowers.

This outfit was almost an accident. I had planned the pinup girl clothing skirt & top combo but the best part of this outfit, the thing that makes the whole thing work as an outfit, is the mint cardigan & that was a last minute addition because the day was so miserable & cold. I swear all my best outfits are accidental.

As I said before the top & skirt are from pinup girl clothing - the Doris top in white & the Jenny skirt in Leaves Print.
The cardigan is an old one from Next, the belt is old from French Connection & the shoes are from B.A.I.T.

I'm not one to favour practically over fashion (pretty much ever) so I am ADORING retro/vintage/pin up fashion & the full skirts, petticoats & corsetting that comes along with the style. Well my corsets haven't arrived yet so I may hate them but I loved corsets when I was an emo/goth wannabe in my teenage years so I'm looking forward to getting back to wearing them for real this time (with tight laceing & waist training if my body is willing to cope).

Does your style lean more to the practical or the pretty? I'm seriously useless for practicality, I used to wear dresses & ballet pumps to powerchair football, I even once wore heels lol

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Wheelchair Fashion: Spring Colours

Wheelchair Fashion: Spring Colours

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chronically ill, disability, fashion, lifestyle, ootd, plus size, retro, spring, vintage, Wheelchair

This is not going to be the most coherent post ever but honestly I needed something to distract myself with & I really wanted to share these photos.

Things are high drama at home atm & I'm not able to escape from the stress or get as much rest as I need so my energy levels are rock bottom low & my pain levels are sky high but I managed to get out to take outfit photos in one of my better moments earlier in the week.

I had this crazy idea of maybe entering Miss Pin Up UK & I was convinced I would need new outfit photos to do that....I'm pretty sure that's not something I'm not going to do (I'm not I've got the energy to do it) but these photos are still pretty cool.

The skirt is from Lindy Bop, the top is from Pin Up Girl Clothing (totally worth every penny), the shoes are from B.A.I.T. footwear and the belt is from Hell Bunny.

Anyway, I hope you like these pictures :)

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Being Realistic

Being Realistic

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blogging, chronically ill, lifestyle, M.E., random

I started blogging quite a while ago because I couldn't find any fashion resources for wheelchair users & so I did it.
I am however a bit of a perfectionist & once you are a part of the blogging community it is hard to avoid those posts that are titled things like '5 things every blogger should do' & 'How to become a better blogger' etc.
I'm not a perfect blogger but the one thing from those articles I always tried to stick to was consistency, apparently people should know when you are going to post...some people even recommend only posting at a certain time in the day!

Anyway, I didn't mind posting regularly to start with - it gave a structure to my weeks & it was kind of fun - but as my M.E. gets worse I'm finding that I either have energy to go out & take outfit photos or go out & do something fun. I love blogging, being a part of the blogging community & I love getting pretty in my nice clothes but if I'm honest, the schedule I have been imposing on myself has been making it hard for me to remember the good parts & that totally defeats the purpose for me.

So I'm going to be taking a bit of a step back. I'm going to stop going out just to take outfit photos & instead I'm going to go out to do something I enjoy. I'm going to stop forcing myself to go out once a week even when I really don't want to & I'm going to start allowing myself to buy clothes for me, not for outfit photos.

What this will mean for my blog is that I will be posting less often & less consistently. There maybe one post a month, there maybe three or there maybe none, I can't say. What I can say is that I'm hoping to rediscover my love for blogging & stop thinking of it as a chore because that way leads to madness :)

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Wheelchair Fashion: Old Faithful

Wheelchair Fashion: Old Faithful

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autumn, disability, fashion, lifestyle, Wheelchair

Hi there. I have just spent most of the week trying to work out a name for this ootd, for me this is pretty much just 'clothes'. The crochet top is what gets called on any time I want to look put together but I don't have the energy to come up with some fully thought out outfit, the skirt is just something that I happen to own that is relatively new & comfotable then I added a belt & lipstick. Seriously this is as close to a signature look as I get, maybe that's what I'll call it :)



In my last post I talked about my noise cancelling headphones, this is a perfect example of the ways I wear them. I totally tried to take outfit photos without them on but trust me I looked exhausted, miserable & in pain (not cute). When I'm somewhere noisey like town I feel so much more in control & I have so much more energy to focus on what's happening around me, plus my lipstick totally goes with them :)
These are the peltor ear defenders btw, I am basically living in them atm what with fireworks & roadworks & all the other painful background noise there is.

Any who, the top is old from George @ Asda, the skirt is new from Modcloth & the belt is old from French Connection.

Do you have a signiature look or a peice of clothing that you gravitate to when you are in a rush to look good?

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Spoonie Survival Kit: Noise Cancelling Headphones

Spoonie Survival Kit: Noise Cancelling Headphones

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chronically ill, disability, Favourites, lifestyle, M.E., random, review, spoonie

I've been meaning to do this post for a very long time but I never seemed to get around to it, it always seemed massively overwhelming, but then trying to include everything that is a part of my spoonie survival kit in one post would be overwhelming, I think half of the things I own could count as part of my survival kit.

So I've decided to take this one item, or group of items at a time, & make it a series. So from now on once a fortnight or so I will talk about something from my spoonie survival kit.

So I'm starting with something that is probably the most important item in my personal survival kit, my noise cancelling headphones.

There are two kinds of noise cancelling headphones; the kind like my Bose headphones which basically 'edit out' the background noise using some fancy pants computer programme I cannot understand even a little bit & the kind like my Peltor ones which block the noise using a lot of foam & by making a vacuum almost around your ear.

You don't need both kinds of headphones, they both have good points & bad points but essentially they both block noise so there is no way you need both kinds. However since I have both kinds I thought I would do a pros & cons so you could see which kind would work best for you.

3M Peltor Optime III Ear Defenders

Pros:

• Inexpensive (£19.60 on Amazon UK as of time of writing)
• Very effective at blocking out background noise
• Surprisingly comfortable for short periods (upto 3 hours in my experience)
• The louder the noise the better they block (which means they don't leave you feeling totally isolated, when it is quieter people etc are muffled not totally gone)
• You can buy replacement ear cups etc for them
• There are several sizes of ear defenders available, these ones are huge (I bought them to block out the noise of bonfire night which is AWFUL in my area) but they also come in much smaller sizes e.g. kids ear protectors

Cons:

• Can get quite tight
• Can be kind of isolating
• The ones I have are quite large & not heavy exactly but I can definitely feel them on my head & I'm certain that on touch sensitive days I'm going to hate them
• They stick out from my ears massively (seriously I look like princess leia) so there's no way I'd be able to sleep with them on
• If the ambient noise is loud enough people talking get blocked out too, quite common in shops with loud music...

Bose Quiet Comfort Acoustic Noise Cancelling Headphones

Pros:

• Extremely comfortable - seriously the most comfortable headphones ever
• You can listen to music etc through them, in fact they are more noise cancelling when you are listening to something through them
• They are very light
• They are very good at blocking out just background but not people talking etc
• You can buy them as in-ear headphones if that is something you can cope with

Cons:

• Expensive (The current version are £269.95 on Amazon UK at time of writing)
• They aren't as good as the Peltor ones at blocking out loud music in shops (I guess the db rating is lower?)
• Sudden banging noises (like card doors slamming or fireworks) cause the computer to make a popping noise a couple of seconds later, annoys me every time

I also have a pair of Edz Kidz Ear Defenders which I haven't talked about in this post, simply because I have nothing good to say about them (other than perhaps that they fold up very neatly), they are excruciating to wear & so I can't really give you any information on their performance.

Anyway, I hope this post is helpful for you & that you find the series interesting :)

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Severe M.E. Day

Severe M.E. Day

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body, chronically ill, disability, lifestyle, M.E., photo, photography

Over the past few days I've been assessed & better assessed for various things & I feel like there is no better time to write this post.

M.E. is a very misunderstood illness. To be officially diagnosed with M.E. you have to be at 50% of your pre-M.E. ability level, as a base line & yet we are labelled 'fakers', 'lazy', sufferers of 'yuppie flu'....it's treated as the equivalent of Victorian ladies going into a decline.
More than 64 symptoms of M.E. have been documented covering all of the bodies systems especially the neurological, immunological, cardiovascular & digestive systems & yet we are labelled as 'pretending'.
M.E. is well documented to happen in clusters & to be transmitted via blood transfusions & casual contact (the belief being that it is highly infectious but also highly selective meaning that everyone can be a carrier but not everyone can be a sufferer) & yet it is 'all in our heads'.

Severe M.E. is heart breaking. In the 1980s an AIDS doctor testified that M.E. patients, 'feel effectively the same every day as an AIDS patient feels in the last two weeks before death'.
For many Severe M.E. sufferers this level of suffering can last for years, even decades with little/no treatment or support & rarely anything that is actually appropriate.

As I degenerate & get closer & closer to being part of the 25-30% of M.E. sufferers who are classed as severe I gain an ever growing respect for what they manage to achieve & how positive they manage to be about the M.E.
When I flare (ever more often these days) I get glimpses into what it's like day to day for those men & women & it is not a great picture.

In my last flare I couldn't cope with anyone in the room. I struggled with noise & light &, on some days, any sensory input at all. My temperature jumped between burning up & freezing cold but I wasn't strong enough to lift my duvet or 'together' enough to use my fan's remote control. Everything was heavy, my water bottles (with 150ml of water in), my clothes, my extra light cutlery, my arms, my teddy, even the new extra light duvet my mum got me.
I would have my blackout curtains drawn, light blocking film over my windows, no lights on & I would still have to be wearing two pairs of sunglasses. I couldn't sit up, I couldn't feed myself or even get myself a drink. I couldn't even turn myself over in bed most of the time. Audiobooks were the only thing I could cope with & I could only cope with quiet, familiar audiobooks on the better days of the flare. I floated in a pain filled exhausted haze for most of the days being truly awake for no more than a few hours at a time.
It being a flare I didn't stay that bad for more than a couple of weeks & by the end I was doing much better & able to cope with more input, if only for short periods, but for 25-30% of M.E. sufferers that is a part of their normal. I know a wonderful girl for whom that would be close to a good day & that is why Severe M.E. is so misunderstood because how can someone for whom that level of suffering is a good day be visible?
They can't. It would be too dangerous, definitely over tiring & it could push them into even worse suffering.

I am certain that there are thousand, hundreds of thousands of doctors, M.E. specialists, researchers & journalists who have never spoken to, met or even seen a severe M.E. sufferer & yet are still adding their opinions to what M.E. is.

In my (admittedly limited) experience of doctors I have rarely had one be anything other than shocked & confused by the severity of my symptoms & I don't even have severe M.E.! How a severe M.E. sufferer is supposed to get the support & basic care they need when doctors don't even seem to be able to cope with me is something that worries me. I rarely even have doctors who are willing to call a broom a broom, a.k.a. however many times I call my condition M.E. they insist on calling it CFS, & I have to feel like that is part of the problem....I'm starting to rant a little bit & since I don't want to sound like my mum I'll start with the links.

No-one who isn't a Severe M.E. sufferer can really explain the day in, day out unrelenting nature of severe M.E. or what goes into living with it so I'm going to link you to some amazing severe M.E. sufferers to give you more of an idea.

Chronically Living: A (I think) 17 year old severe M.E. sufferer who's instagram is full of positivity, honesty & some really wonderful photos (I wish my instagram pictures were half so good).

Me, Michael & M.E.: One of my favourite M.E. blogs & (more importantly) one of my favourite people. Laura is a true hero being as amazing as she is whilst as ill as she is. Her posts for M.E. awareness month in May were amazing & worth reading right now.
     My favourite post: My life (an amazing insight into severe M.E. day to day)

Documenting M.E.: This is one of the blogs that my mum reads but I can't cope with because it is far too scary for me. Brooke is dying of M.E. & she has been documenting her decline for about a year & a half. The information she gives about M.E., what she is going through & ways that M.E. sufferers can be supported are amazing & the posts she has managed to write are WELL worth reading.
      My favourite post: Advice for Nurses Working With Severe M.E. Patients

A rainbow at night: I adore Kit, she is so strong & passionate & always seems to be saying what I'm thinking or ranting the rant I wish I could put into words. Her blog is so amazing & it really sees the M.E. from the same place I'm seeing it if that makes any sense.
      My favourite post: (all of them?) The Parts of M.E. & M.E. vs. CFS vs. SEID

Hummingbird Foundations for M.E.: The BEST resource for M.E. I have ever found, it is full of links to real studies & information with evidence to support it (unlike anything I've seen on other M.E. charities, websites or government health pages). It's very dense reading, it can make me very ill just trying to read it so unless you have spare energy I would advise getting someone else to read this, picking out the relevant parts & then reading you those.
      My favourite post: Severe M.E.

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Wheelchair Fashion: Evening Florals

Wheelchair Fashion: Evening Florals

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chronically ill, disability, fashion, holiday, lifestyle, vintage, Wheelchair

Hi again. This recovering from my holiday thing has thrown my body way out of whack, my energy is dipping drastically between 12 & 3 & peaking after 5.30 (which I would have sworn was impossible).
This weird evening energy boost meant that when earlier this week we went out for a meal (which used all of my saved up energy & was totally worth it) we went out in the evening making it my first evening out since I went to Red's with a bunch of bloggers last summer.

The restaurant we went to was actually just down the road from Red's, it's an amazing Latin restaurant (Las Iguanas) with a cool mix of Mexican & South American cuisine & a crazy number of cocktails (more on that later).

First this dress (yes this is a single dress!).

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Kobayashi Maru - Or Why I Came Home From Holiday Early

Kobayashi Maru - Or Why I Came Home From Holiday Early

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chronically ill, disability, holiday, lifestyle, M.E., photo, photography, Wheelchair

As you may know I went on holiday recently & came home after only two days (of a holiday that was supposed to last nearly a week).
It's hard to explain how this came about, the short answer is M.E. but that doesn't really explain it.
In theory a canal barge holiday in term time & mid week is ideal for a borderline Moderate-Severe M.E. sufferer like myself; the canals/rivers aren't busy, the boats move at no more than 5 miles an hour (my electric wheelchair goes faster) & there are things to see out of the windows without you having to do any work. If you went with an experienced crew, a mattress topper (the beds are not comfortable) & on an overcast week (or with lots of sun glasses to layer up) it could be perfect.

I had none of these advantages. The only one of us who had ever been on a canal barge before (my mum) had done it when she was child & my brother had only ever done sailing before which is apparently very different (who knew a tiny 1 man sail boat would be different to a 60 foot barge (?) ^^), I hadn't realised how uncomfortable the beds would be so had taken only my pillows & the two days we were there were unbelievably sunny (you should see the sunburn my brother got, he managed to burn his eyeballs & burn one of his arms so badly it blistered).

But honestly I should have been able to cope with these problems. Looking back I could have covered my bed in spare pillows & my duvet to make it more comfortable & I could in theory have stayed inside more & wore my noise cancelling headphones more to block out the panic & stress pouring off my brothers. All of that seems so sensible & so reasonable now & perhaps that is what I should have done but it was impossible to be sensible.

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Wheelchair OOTD: Queenie Sian

Wheelchair OOTD: Queenie Sian

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fashion, guest post, lifestyle, ootd, summer, Wheelchair

I'm on holiday right now so the organiser of the Team Princess event, the mind behind Me, Myself & M.E. & all round wonderful person, Sian has done this amazing guest post for all of you :)
I have been super inspired Sian's outfit & I'm sure you will be too, make sure to check out her blog once you've finished here, I've found her travel tips invaluable.

Silly me decided to pose in my heels at the top of the stairs. Not particularly recommended for those with weak muscles and poor balance.

 Hi everyone! Firstly, I want to say a big thank you to Sally for letting me write a guest post for her. I feel very priviledged. I've been wanting to do some more ootd type of posts for a while but as someone that hardly gets to wear clothes, not that I'm a nudist, I'm just in pyjamas a lot. I did start the year by resolving to wear proper clothes more often and make better use of the ample amount of clothes I have; because that's the other thing about being chronically ill you can spend a lot of time internet shopping. But that quickly fell by the wayside. I do however love to dress up when I do get to leave the house and when Sally asked for a guest blogger as luck would have it, it was shortly after I had worn a nice outfit to go out and taken a fair few photos in the process.

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