Friday, 22 May 2015

Wheelchair Fashion: Princess Palace Style

I'm back with another team princess ootd. M.E. awareness week may be over but May is not ^^
If you don't know what I'm talking about when I say team princess you may want to read this post & have a look at this facebook page. And if you want to you can still donate on the just giving page to any of the registered M.E. charities in the UK.

Yet another pastel look (I may be a tiny bit obsessed...) & honestly it's not super princess-y, I'm starting to run out of princess-y clothes.
Blogger Tricks

Tuesday, 12 May 2015

M.E. Awareness Day: What is in a name?

Trigger warning: I'm not going to be pulling any punches & some of the facts in this post are less than cheerful if I'm honest. My brain had a total melt down whilst I was doing the research & I don't think the post is any less stressful. Sorry.

I have been really struggling to find the will to write this year's M.E. awareness day post; partly because I am down again in my ability level, partly because I feel like everything that needs to be said has been said by me or by any number of other M.E. bloggers & partly because I'm over it, you know?

I'm sick of having to educate everyone I speak to over & over again about M.E. & what the difference between the diagnosis of CFS & actually living with M.E. are.
I'm sick of having to fight doctors (& other 'professionals') for every bit of help I need.
I'm sick of knowing that we suffer with two conditions, M.E. & institutionalised ignorance.
I'm sick of being treated like I am choosing to be ill & that it's because I'm lazy or enjoying it or scamming the system or whatever.
I'm sick of having a condition that is almost like a political position (like being big into recycling or something).
I'm sick & tired of being sick & tired.

But honestly, what I am most sick of is knowing that if my doctors saw the name of any other condition on their computer monitors they would take my symptoms a hell of a lot more seriously.

I'm aware that things are different in other countries but in the UK M.E. cuts you off from a lot of treatment/support/medical options.

Friday, 8 May 2015

Wheelchair Fashion: Pastel Princess

May is M.E. awareness month & this year I am taking part in the Team Princess awareness campaign & this year I will be doing 'Princess' ootds for the whole of May. If you want to learn more about the campaign this post & this facebook page are a good starting place & this is the just giving page that has been set up.

I've spent most of this week writing Tuesday's M.E. awareness day post.

Friday, 1 May 2015

Everyday Fashion: Sleeping Beauty

May is M.E. awareness month & this year I am taking part in the Team Princess awareness campaign & this year I will be doing 'Princess' ootds for the whole of May (today included ^^). If you want to learn more about the campaign this post & this facebook page are a good starting place & this is the just giving page that has been set up.

This week I have persistently done way too much for my body to cope with & also not enough to make me feel like I have achieved anything. Getting my hair cut on Thursday (something I hadn't managed since November, not ideal for someone with a pixie cut) was the final straw & my week long attempts to get a 'proper' ootd post done crumbled. As a substitute I am doing a prettied up version of me on my bad days (& when I say prettied up I mean the difference between the women in magazines & women in real life kind of prettied up).

On my bad days I am usually bedridden except for infrequent - & very slow - trips to the bathroom.

Friday, 24 April 2015

Wheelchair Fashion: Floral Princess

You guys may remember that May is M.E. awareness month (Tuesday the 12th of May is M.E. awareness day). M.E. is a very misunderstood condition & we often have to raise awareness ourselves of our symptoms & the realities of our condition.
One such awareness campaign is the Team Princess campaign & this year I will be doing 'Princess' ootds for the whole of May (today included ^^). If you want to learn more about the campaign this post & this facebook page are a good starting place & this is the just giving page that has been set up.

Now the house keeping is out of the way lol, how pretty is this outfit? I LOVE this dress & I am so so happy to be wearing it again! And I love wearing it in this faux skirt style with the shirt tucked into the belt, it's a great way to make a dress more versatile. I feel like this is a SUPER princess-y outfit. Classic, understated but super elegant & feminine...obviously the purple hair is not exactly Kate Middleton princess but maybe it's slightly more animated princess or something?

Friday, 17 April 2015

Wheelchair Fashion: Sunshine Madness

At the beginning of last week I had a random good period - I was full of energy (not normal people full but better than I'd been for at least 8 months), I wasn't getting kick back from doing things, I wasn't sensitive to the things I usually am - & I felt untouchable, I thought I could do anything!
I went out two days in a row in proper clothes, makeup etc with no sunglasses & drank real lemonade (one of my huge sensitivities is citrus acids). It was magical, like all those 'if I was better for one day' daydreams people have & it felt like it would last forever...

Obviously it didn't...looking back the choices I made were dumb & I used up a lot of energy really fast but it was like I was floating on something & reality was a long long way a way & all around me were bubbles & sunshine & the magical feeling of not being exhausted or in pain. I forget how...heavy having M.E. is & when even a portion of that is lifted away it is hard to remember to walk with your feet touching the floor ^^

Anyway, the outfit...

Friday, 10 April 2015

Wheelchair Fashion: Spots, Crochet & Golden Balloons

Totally randomly my energy seems to have balanced itself out. M.E. has serious problems with logic or doing things in a way that it is possible to understand.

I have definitely possibly been running myself a little hard making the most of the extra energy, the sunny weather & the fact that my brother is home from Uni. I left the house two days in a row in proper clothes, with makeup on having done my hair! A week ago (even the day before) I would have struggled to do any one of those things even once, M.E. is a weird weird condition.

Friday, 3 April 2015

Wheelchair Fashion: Easter Casual

My gosh has this week passed in a blur of 'huh?'. I literally didn't know today was Easter until a couple of hours ago - good thing I don't buy Easter eggs - & thought today was Wednesday, meaning I still had days to write this post, right up until that moment so this is going to be short & sweet. (Meaning short, possibly incoherent but full of pictures cause I've already edited those ^^)

Friday, 20 March 2015

Wheelchair Fashion: Jet Set Eleganza Realness

Hieee, I'm back ladies & all things being equal I don't feel too much worse for wear (although I filled out a form on Monday & was wiped for the rest of the day, screens, focusing & logic are a total beeyatches).

Anyway I've been watching A LOT of RuPaul's Drag Race during the flare - it's been pretty much the only TV I could cope with without getting over tired - including the new season & I have been gagging to do a drag OOTD post for you all.
Well here I am doing a look inspired by the runway challenge the queens had to do at the end of the second episode of the new season.

The challenge was 'Jet Set Eleganza' & I had to wonder if a single one of these queens had ever been on a plane because

Friday, 13 March 2015

.....and the elastic snapped

I'm so sorry I haven't posted recently, & may not post 'normally' for another week at least.

Last week Thursday I had a little dip, nothing unusual, just a little more tired than I expected to be. I'd been a little more tired than I expected to be all week though so it didn't bother me but I reconned I should spend the day in my room (it's way quieter there).
By Friday I was the worst I had ever been. It was like an elastic band snapped & I was flung backwards. I was bedbound, in huge amounts of pain & - for much of the day - incoherent or unable to speak. Three days later I got out of bed for the first time & was too tired to stay sat up for more than a few hours (it weirds 'normals' out but sitting? uber tiring activity).

Now a week later I am still getting 8 or 9 level pain every day, I am having to wear noise cancelling headphones & sunglasses 60%-90% of the time, I can't watch tv for more than an hour or so at a time  & it can't be anything new, I'm struggling with anything logical (I thought 2 + 0 + 0 + 0 = 2000 this morning...which would be nice) and I can manage the stairs, on my hands & knees, a maximum of twice a day....which is making it interesting r.e. going to the bathroom (tmi I know but I have to talk it through & where better to do that than on the internet for the whole world to see?)

So, anyway, blogging will be on the back burner for the moment until I get things a little more under control. I will still post when I can but it may not be especially regularly.
If anyone has ideas for low energy posts I would love any advice I can get, I was thinking maybe a Q & A post so if anyone has questions please leave them in the comments, on twitter or on instagram.

Thank you for being so understanding & hopefully things will be back to 'normal' in a week or two.