Friday, 28 August 2015

OOTD: Sophisticated Sleeping

I have been unwell recently, well that's how I always am but this has been different...
As I've said before I have degenerative M.E., what that means for me is that after every flare (& I've had at least one a year since I very first got M.E.) I get a lot worse, then I pick up a bit but not to where I was before....then I have another flare. Therefore, over time I get worse & that worse has been increasing...last year I had 2 flares.....this year I've had 4.

Heck this summer alone I've had 2.... I'm still getting the hang of where my health is now & what I'm able to do. I'm having to give up on my powerchair football & I've been struggling with.......well basically everything.

I've been finding that even when I mange to get out, it's just too difficult to get pictures taken as well as coping with the information overload. Luckily I saw this picture of Miss Piggy taken by Anatol Kotte:

Original Image

If Miss Piggy can rock glamour whilst getting 40 winks, I can too :)

This look is actually my regular eye mask, an old scarf & a little lipstick (super easy to replicate) my wig loosely curled (although I only actually curled half of it because it was exhausting & it looked just as good only half done).

Hopefully next week I'll have gotten used to my 'new normal', won't have flared again & will be able to do a 'proper' ootd, I have an amazing dress from lindy bop that I can't WAIT to wear :)
Blogger Tricks

Friday, 14 August 2015

Wheelchair Fashion: Lavender Florals

Hi everyone. My brain is super mushy right now so I may not be super coherent in this post :)
I've been really struggling with clothes recently so I've been wearing a lot of dresses but there are seriously only a few ways a girl can wear a dress so I made my self put on this skirt.
This skirt is from Scarlett & Joe (who I have been LOVING recently) & I had a total melt down trying to put together an outfit...

In the end I put together this look which is totally inspired by all the vintage looks I've been obsessed with lately but I kept everything soft & modern rather than the very crisp, structured way this would be worn if it was more of a vintage look.
The skirt is really comfortable, although the first time I put it on the elastic was so tight that pulling it over my thighs & ass was done to the sound of snap, crackle & pop rapping ^^
The cardigan also doesn't fit very well, it is stretchy but it makes my boobs look squished down when I try to fasten it & it gapes awfully (#plussizeproblems).
Lol, I entered a photography competition recently & was having to explain why a photo I took was the way it was & honest to goodness ended up saying #wheelchairphotographerproblems.....hopefully they have a sense of humour :)

Anyway, hope you have a lovely weekend, despite all the rain :)

Friday, 7 August 2015

Severe M.E. Day

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''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.

Friday, 31 July 2015

Wheelchair Fashion: Evening Florals

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!).

Tuesday, 21 July 2015

Kobayashi Maru - Or Why I Came Home From Holiday Early

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.

Friday, 17 July 2015

Wheelchair Fashion: Vintage Florals

I'm back from my (unfortunately shortened) holiday. These photos were taken before my trip (which is good because I ended up not managing to take a single ootd photo on holiday...) & were meant to go up the day after I returned to give me some breathing room on editing my pictures :)
It's funny how life turns out :)

Anyway this dress is another one from Lindy Bop & it is probably the most comfortable thing I have ever owned. The dress is elasticated, pulls on over head & the top is made of the softest jersey imaginable.

Friday, 10 July 2015

Wheelchair OOTD: Queenie Sian

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.

Friday, 3 July 2015

Wheelchair Fashion: Lavender Heatwave

Oh my gosh the heat is ridiculous! I used to love heat, honestly right up until this year I had greeted the approach of hot, summer weather with much joy.
This year however my body seems to have fallen out with the heat & the warmer it gets the more my joints swell up & the worse my back pain gets. Plus it draws the benefits tourists across the street out of their houses to make excessive noise until 11/12 at night making it impossible to rest!

One good thing about the heat though is the necessity to leave the house, leave the city & get somewhere with a stiff breeze & air that doesn't taste of sweat (you know what I'm talking about).

Wednesday (when the temperature got as high as 30 degrees C!) we all packed up & went to Yorkshire Lavender. I've posted an ootd taken at Yorkshire Lavender before with more of a review of the tea room so I won't bother to do one this time but let's just say the quality hasn't diminished (even though the number of coach parties seems to have increased).

Friday, 26 June 2015

Wheelchair Fashion: Perfectly Pink Polka-Dots

The weather has been glorious this week, isn't it always the way that you get wonderful weather only when you can't really enjoy it? It was always glorious whilst I was doing my exams & this week whilst I was too tired after powerchair football to do more than lie in my bed.
It was totally worth it, my team are amazing & you should have seen their faces when we won the cup. 500% worth however exhausted it made me (which was by far the most exhausted I've ever been).

As I was starting to come round I found Lindy Bop online which is a cool UK vintage inspired brand. I love a good midi skirt & whilst the skirts are super cute on the site, it is the dresses that I fell in love with. As a treat for being good & resting sensibly (which I did, however bored I got) I bought myself a couple, including this one.

As you may have guessed from reading my blog, I'm not usually a pink person.

Tuesday, 23 June 2015

Quarterly Favourites: 03/15 - 06/15

I realised I haven't done a beauty post in an AGE! I only really wear makeup for ootd posts & when I go to powerchair football these days so I don't buy a lot of new makeup (I'm trying to use up my old stores) & I have such short hair that I don't really do any styling :)

I think the only new makeup I've bought in an age is the Illamasqua Gel Sculpt which is supposed to be this wonder product for contouring.....