Friday, 10 June 2016

Wheelchair Fashion: Summer Ice-Cream

Wow, I've been AWOL for a while. Things went a little nutty there. I had a....dip I guess I'd call it? I hesitate to call it a flare because those are usually short & dramatic for me, followed by a few days/weeks of recovery. This felt almost like a natural progression & at several points in the last few weeks I was worried that that was what it was.
I was bedridden, completely, for a while & I kept drifting in & out of an almost delirious sleep. Focusing, even on eating & drinking was hard & even when stuff started to get easier I struggled with stuff that wasn't hard before. I'm still struggling with things like Instagram & blogging. I'm sure I'll get the hang of it again but I really miss staying in touch with my friends.

It was so glorious at the beginning of this I pushed myself to get out & take some outfit pictures. I was so scared that going out would instantly be too much (I'm sure you guys know the feeling) but guess I'd left it long enough & it was actually magical. I didn't do much obviously but just being out in the sunshine hearing the birds & feeling the breeze nearly made me cry, I'm a total wuss lol :)

I'm not really sure of words to say or things to put in this post. I feel like I owe you all a post with lots of information, interesting anecdotes or at least something more than "my top is from pin up girl clothing, my skirt is from lindy bop, my shoes are from B.A.I.T. footwear & my hat is old from H&M" but I'm not really sure what to add. I've been so out of it for so long & my foster brother is using so much brain space at the moment that I'm totally muddled.

It's stupid to think that 6/7 years ago I would have looked at what I am doing right now - sitting in pjs at 2 in the afternoon on a weekday desperately trying to write a blog post - as nothing. The me I was back then would probably have thought it was a waste of time & she definitely wouldn't have been happy knowing that at 23 she would still be living in her mum's house having achieved none of her goals.
The me I am now just feels unbelievably lucky to be able to sit up in clean pjs, having had a wash (including my hair!!!) & think clearly enough to write this. I feel so lucky that I was able to go out when it was sunny & that it hasn't put me back into bed.
I feel sad for the me I used to be sometimes, she had so much (her health & all that energy for one thing) & she was so busy getting ready for the future that she didn't really make the most of the time she had.

P.S. I know it sounds weird to think of myself as two separate people but I really have very little in common with the person I used to be. That person had the potential to be me but she was so busy worrying about where she was going that she forgot to enjoy the journey. Knowing that all I have is the journey I'm a much happier, more fun person.

How has everyone been? Did you get to enjoy the weather?
Blogger Tricks

Thursday, 12 May 2016

M.E. Fashion: Sleeping Beauty

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 M.E. awareness month & 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.

I'm not sure why but May is a time of year when I get extra tired, which I guess makes it a perfect time to do an everyday fashion post. Or at least, my everyday fashion....which is pjs these days. Seriously M.E. lends itself to such a glamorous lifestyle lol.

I wanted to make this outfit even more realistic than my last sleeping beauty look which was cute but an idealised look at M.E. This is still not super realistic, I feel uncomfortable not wearing makeup when I am doing photos so I am wearing makeup. And I don't usually sleep on top of a pretty blanket with sunlight flooding in my windows & I never sleep on my back because I find that really uncomfortable....
Eh, realism is over rated lmao.

Last time I did a sleeping beauty look I talked about bedridden days, the days when even basic things are nearly impossible & all stimuli are overwhelming. I don't really have anything to add to that, it explained it pretty near perfectly so I thought that this time I could talk about 'normal' days.

When I say normal days I mean the days, like today, when I am out of bed but I'm hurting, the days when I'm struggling to do anything but doing nothing feels like a torture. Normal sounds wrong, even to me. I feel like I should call them bad days or awful days but they account for at least 70% of my life, however much I wish they didn't.

Normal days. For me these are the pea-soup-er fog kind of days, the grey days where everything is done whilst fighting through a molasses of fatigue (kind of mixing my metaphors there but you get my drift). These are the days when doing 5, 10 minutes of colouring can leave me breathless & with so much pain in my arm that I am struggling not to cry. Where hearing the postman can be so overwhelming I have to stop everything for a few minutes.
They can also be the days where the fatigue hides, telling me that I am doing really well until I suddenly realise I can hardly move from the exhaustion & I am somewhere I can't rest.

I would say I mess up most on my 'normal' days, the days when I'm too tired to remember to be careful or to properly access what energy I have left but I have too much energy to be comfortable in bed. (I'm a terrible patient, if I'm not too tired to move I HAVE to be doing things or I go insane! And not even a little thing, I have to be using at least two senses e.g. hearing & sight or sight & touch.)

Not every spoonie has these days; 25% of M.E. sufferers would consider those days a good day, a once in a blue moon kind of day that made it possible to survive. I try to remember that when I am feeling drowned by a never ending string of 'normal' & bedridden days but I guess you can only live in your skin.

I was honestly hoping to do a more upbeat M.E. post to counterbalance this - & I will hopefully get to write that soon - but my brain has been about as useful as old spaghetti recently & I barely managed to write this in time.

Some of my other M.E. posts:

The Trouble With Words

Severe M.E. Day

M.E. Awareness Day: What's in a name?

My Weirdest M.E. Symptoms

Wheelchair Fashion: Black Dress Selfie for Severe M.E. Day

Good places for accurate information:

The Hummingbird Foundation for M.E.: Some of the best & most accurate information out there
         Where to start: What is M.E.?

A Rainbow at Night: Kit is a dedicated advocate for M.E. (which is different from CFS or any other label that M.E. patients can be stuck with) & has some very good information on her blog
          Where to start: M.E. vs CFS vs SEID

Documenting M.E.: Brooke is dying from M.E. & documented her decline, as much as she could, for the past 2 years. Whilst she, understandably, hasn't posted in a while, her blog is a treasure trove of information
           Where to start: Advice for Nurses Working with Severe M.E. Patients

Extracts from Magical Medicine: How to make a disease disappear
 This is literally just a MASSIVE list of studies showing the physiological evidence for M.E. as a disease. When my Grandma's disbelief (she thinks I'm only ill because I'm too dependant on my wheelchair & if I was more positive I would get better) & the disbelief of so many undereducated, overly arrogant doctors gets to me & I find this list incredibly soothing. All of these scientists, all these decades & decades of research, know that my condition is as real as any other & just as (if not more) debilitating than any of them.
What can I say, research soothes me.
       Where to start:

Thursday, 28 April 2016

Wheelchair Fashion: The Flower Queen's Daughter

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 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).

Friday, 22 April 2016

The Trouble with Words

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.

Friday, 15 April 2016

Wheelchair Fashion: Mint Leaves

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

Friday, 1 April 2016

Wheelchair Fashion: Spring Tartan

Hi. If I'd realised this was going to end up being my April Fool's Day ootd post I'd have come up with something a little more interesting. I don't know though, April Fool's Day seems to be about right for the outfit photos I took whilst freezing, sinking into the mud & showing too much side boob.

Before I forget, I totally recommend  this amazing blog post (translated link) by Jacqueline on what style of dresses work best for her in her wheelchair. I would have loved to have found a post like this when I first started using a wheelchair, it seriously would have helped me avoid so many fashion mistakes :)

This outfit is another vintage inspired look (like all of mine at the moment) & I think the first time I've blogged an outfit wearing a full 50's style petticoat.

The top is a peasant blouse from Pinup Girl Clothing & it could not be more different from the peasant tops of my tween years! For a start this one is tailored to with in an inch of it's life, offering shape & structure. I think I got mine in a size too big as I have a tendency to...'spill out' of the looser, top part.....all in all though I love it. My only gripe is that the zip is in the back which can make it difficult to sort, I need help getting dressed so it wasn't any more awkward for me than anything else is (especially not more awkward than tights) but I know I would have struggled with it in years gone by.

The skirt is from Vivienne of Holloway & it's their standard circle skirt. I find it to be very comfortable despite (in theory) being about 2 sizes too small for my seated shape, although it is a little long for me in the wheelchair, hitting near my ankles without a petticoat. I think I'm going to end up getting it shortened by at least an inch, although stood up it is a much better length.

The petticoat is from Malco Modes (bought from Deadly is the Female) & insanely soft & really REALLY full although I understand that you can get fuller ones (!?!). I have the peggy? in white & it's weirdly not that impractical in an electric wheelchair (I would not recommend a petticoated skirt to a manual wheelchair user, I'm not sure it would be safe). I have to swing the skirt like a bell before I sit down so that the fluffiest part is not underneath or behind me when I sit down but it's not that much more difficult than sitting down in a large skirt without a petticoat & I really like the way it keeps the skirts looking the way they were supposed to look.

I really like this vintage-y style look & the way it helps me maintain the illusion of an hourglass silhouette so I am willing to put up with the compromises I have to make to get that (i.e. trying to transfer to the car in a petticoat, in the rain) but this would also have looked cute with no petticoat & a skirt 5 inches shorter...

The top really is awesome though, I totally recommend it.

Friday, 18 March 2016

Wheelchair Fashion: Spring Breakthrough

A few things happened this week that made me think about who I am as a blogger. Firstly Rachel of Happy Little Syllables listed me as one of her 5 favourite spoonie bloggers, and honestly I think my heart sunk a little bit. That is utter craziness, it is amazing to be recognised for my blogging, I was totally honoured & I still am but it kind of made me feel the way you do when you get praised for a piece of work you don't feel happy with. There was an essay I did in high school when I was trying to get through my A-Levels after I had developed M.E. (which I swear to goodness I could have done if they had just given me text books, coursework & left me too it rather than insisting I went to class & did exams) which I was not happy with. I used to be really good at essays but I just couldn't get this history essay to flow the way I wanted it to & I HATED my teacher & wanted to show him that I was still just fierce as I had always been. Eventually I ran out of spoons & had to hand it in as it was. I got an A for that essay & to this day that makes me want to scream & being one of Rachel's top 5 bloggers felt like that.

The second thing that happened was Season 8 of Drag Race. Now I don't know how many of you have been able to watch it so I am not going to give any spoilers but WOW! Drag Race is kind of my therapy, I love the idea of "we are all born naked and the rest is drag" and I really try to live that but drag is more than clothes, it's a persona, it's an energy & an openness... Season 7 was full of queens who were serving the drag race visual (some of them better than pretty much any other queen ever has) but there has to be more than that to make someone a drag QUEEN you know? When I'm watching season 8 & I'm seeing queens like Kim Chi, who are just as visual, you start to realise that you have to have the whole package.... I'm rambling massively, I'm trying to take you through my thought process I guess.
There is this one queen, Kim Chi, who is struggling to own her body & that's impacting on her drag & that, whilst I've learnt to own my body, I'm struggling to own my brain & that's been impacting on my blog. I've been focusing so much on my photography & how my looks because I hate what the M.E. has done to my brain & I'm scared that I can't match up to who I once was.

Fashionable & confident in front of a camera is someone who I have become so I don't have anything pre-M.E. that that person has to live up to. Seriously the girl I was in high school would have killed to be so happy in her skin & so confident in her style, even if that meant she had to use a wheelchair.

The person I am now though remembers the brain I used to be & I mourn her. I feel incredibly vulnerable trying to do anything verbal, or academic because it is so difficult for me now & more than anything else that reminds me how much I've lost. When I first started having problems with thinking & logic I could honest to goodness feel the spaces in my brain I had to think around to do things. My brain must be like a gosh damn assault course for thoughts at this point because it gets harder & harder all the time.

But that's not a reason not to try. If Kim Chi could turn out a dance challenge I can turn this out. So from now on I will try harder to be more than just a blog full of pretty pictures, I will try to be more open & chatty & I hope you will cope with any incoherency my I end up typing.

Thursday, 25 February 2016

Wheelchair Fashion: Spring Colours

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 :)

Sunday, 7 February 2016

Wheelchair Fashion: Still Ballooning

After my last big flare this summer I ballooned, massively. I mean I went from a 33 inch waist to around a 38/39... I was okay with that you know; I didn't like it, it wasn't me any more but I could live with it. It was something I could learn to cope with.

Over Christmas I had another flare & I started to balloon again. Anyway so I started to track my calories, I decided to set myself a 1500 calorie goal since I don't move that much & it's unlikely that I'm burning many calories. Since then I have gone over that goal maybe 4 times & never to more than 2000 calories, I had a stomach bug where everything that went into my body (including water) was coming out again & I didn't eat for 3 days (and no more that 500 calories for 3 days after that).
I have also gained more than 8lbs & around 6 inches on my waist.

I am aware that for some people with M.E. weight gain that has nothing to do with what you are eating or drinking is a thing & that people gain weight faster when they are stressed or ill or not sleeping properly.... I also know that my body type hates loosing weight but loves gaining it...I could tell you the facts for days but the truth of the matter is that this is not my body, this is not the shape that I am & it is making me miserable.

It's not like I loved the body I was in before - I had a roll of flab under my boobs that has upset me for years & I have never liked my arms - but I felt in control of that body. If I had decided that enough was enough I could have done something about the tone of my arms or that roll of flab around my middle. Now I know that even if I starved myself nothing would change (seriously after my stomach bug I was the exact same size...). Even worse I know that no doctor or dietician in the world is going to believe that I am not getting bigger because of what I eat...

Honestly I'm not sure why I'm telling you guys all of this except that this is a good place to get all the self loathing & depression type feelings I've been getting off my chest.

The stupid thing is I look at these pictures & I'm thinking why am I stressing, I don't look my best (all I can see is the fat around my face and the fat that makes my boobs look weird) but I don't look as bad as I am seeing myself in the mirror but then I remember that these are pretty much the only clothes I have left that fit me & that I had to fight my way into that bra & that my shape wear doesn't fit anymore & that I'm now too big a waist size to buy clothes from any of my favourite shops & I stop feeling quite so confident....

Sunday, 20 December 2015

Wheelchair Fashion: Holiday Pastels

Wow, I seriously need a hair cut! And I totally need to get dressed up in my pretty clothes more often...I think this is probably the first time since I stopped doing outfit posts & it feels like it's been years.

My brain is seriously mush so I am struggling to come up with anything to say in this post so I'm going to focus on facts.

When I gained all my weight recently I had to get rid of my tulle skirts. More than any of the clothes I had to get rid of (some of which I'd had since I was still in high school) getting rid of my tulle skirts hurt the most. I'm not exactly sure why but my tulle skirts meant a lot to me & I hated the idea of getting rid of them.
Luckily Modcloth came out with nearly identical tulle skirts in my size only days later :) They are not the same as my old ones, obviously; the tulle is slightly less soft, the lining is slightly less stiff & the waist band doesn't sit quite right. All that aside, putting this on felt like greeting an old friend, it made me feel happy all day...even after I'd gotten back into my pjs :)

The top is another purchase from after I gained weight, it is the Lily top from Heart of Haute & I seriously can't recommend it enough! I have it in both the white & the blue & I love it so much :)

The shoes are from B.A.I.T. footwear & the bag & belt are both old.

A quick hint for non elastic belts like this one. I extend my belts with ribbon looping it through the buckle & the holes where the buckle is supposed to fasten...and then I get someone else to tie it so I don't have to see how much ribbon gets used lol :)

Happy Holidays everyone