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So This Is My Day...

12/7/2016

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I don't often put much on social media on bad days. As I lay here in bed I feel like rather than let my #mecfs ,#fibromyalgia , #bipolar ,#anxietydisorder & the myriad other health issues take me prisoner I need to own it.

It was my birthday Saturday. I did everything right for the fortnight before just to get out of the house for that one night. I got out. I had fun. I plastered a smile on my face, I hid the pain as best I could in an effort to avoid the pitying look people give when they see the crutch & the winces as I move.

I came home & I slept & a moment later it was Monday. Six orders to create & pack, I dragged myself around, still in pjs. Muscles felt like tearing, joints raw, vision reduced by migraine, chills & sweats, feeling like drowning, being pulled too hard by gravity. With swollen fingers, forgetfulness, confusion I worked through the pile. Exhausted. That kind of exhausted that doesn't let you sleep.

I know whilst I'm physically alone today there are more like me, painting a picture of normality as far as possible but shut away when it's too much to hide. We live with #chronicillness , #invisibleillness , with #chronicpain people don't believe even exists.

I've set up a group & I invite my fellow spoonie crafters & creatives to join me in this safe & creative space. No motive beyond wanting to support one another & raise each other up, maybe even have a chuckle or two. Its at Spoonie Crafters & I'd love you to join me. 
Take care,

Donna x

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Corset Win Part Two - Attack of the Head Squirrels

18/7/2015

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I know I have a few craft business owners here reading my posts & I suspect what I'm about to write may sound familiar to you guys.

Those of you who are potential customers & friends, (I hope) this is a little food for thought when it comes to choosing whether to buy handmade.
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You've probably gathered by the title I'm going to talk about the corset I just made.  I am, but this could equally be applied to any of the other things I make & probably a lot of hand-crafted items out there.

So, we craft businesses owners decided that we loved creating things so much & people loved what we made so much that we'd turn our hobby into a business.  We have gorgeous products, lovingly handmade with painstaking perfectionism, often with slight imperfections leading to the whole thing going in the bin because that one stitch out of place that nobody but us notices, or the bit of glue that dribbled slightly, covered up but still there all the same, just wasn't good enough for our customers.  We've spent years honing our skills, reading, learning, questioning those more experienced, practising until we are the experienced, then practising some more.  We work through illness, pain & fatigue to meet deadlines. (See part one)  Every item we make is passionately born of love for the craft, for making each person smile when they receive it, for the people who have to have one of our items, for the "Wow!" & the tears & the speechlessness.

But what happens as we near the finish of our project?  When onlookers are amazed & impressed by our work.

Head squirrels!  Mind Monkeys!  Doubting Dora! Aargh!

What if she doesn't like it?  What if it doesn't fit?  What if she wanted these flames different?  What if she hates the fabric?  What if I take too long?  What if she wanted thinner bones, or a more rigid busk?  What if she wanted it looser, or tighter?  What if the shape isn't what she had in mind?  What if she doesn't want to pay that much?  What if she tells all her friends how terrible she thinks my work is?

All this & more whizzed through my head this week, as well as feeling guilty for every nap I needed to take & every hour I should have been working on the corset but was stopped by my health.  This week I put that corset & the customers wishes before my own body's requests in order to make sure she was happy with her purchase & the experience of getting a Miss Red corset.

Am I feeling worse for wear?  Yes.  Do I regret doing it?  Hell NO!!

Why not?  The first word out of her mouth when she saw the finished corset:

 "Wow!"

She loved it, she stroked it, she adored the fabric & knew it would look amazing under the lights at the event she was wearing it to.  She tried it on & was pleased with the fit, impressed at how it moulded around her bust rather than indecently exposing her if she moved her arms too much or dared to bend over, like all the corsets she's had or tried on previously.  She looked absolutely stunning in it, even just over her everyday clothes, & the smile on her face was utterly contagious.  The sizing & cut was perfect with room to lose a little weight - this was intentional on my part as I know that's what she's trying to do, & has been doing successfully over recent months.  She's looking fabulous & my corset accentuated her beautiful curves wonderfully.  Not a single negative comment was uttered & I lost count of the number of times she said thank you & complimented it.  What's more, she handed over the amount I'd asked for (albeit mates rates) without question & I dare say she may even have paid more if asked.  She headed out of my door literally hugging the corset with that smile still across her face & with a hand full of my business cards to hand out to anyone who complimented or asked about her corset because she was so convinced people would.  On top of all that she can go out in her new corset safe in the knowledge that not a single person out there will ever be wearing the same one because hers is completely unique.  Sadly, having finished it last minute I don't have any photos, but hopefully will be getting some after the weekend so you can check out my work ;)

Head squirrels, mind monkeys & Doubting Dora - thanks but no thanks for your input.  As always everything you said was a load of rubbish so kindly take a hike!

If you're considering buying hand-crafted but see something similar in the shops that costs less I hope you'll consider all the effort, time & consideration that goes into making those perfect, non-mass-produced, beautiful items offered by small businesses like mine.  

Give the little guys a break & buy hand-crafted.


Miss Red x

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The PIP Saga Continues...

9/2/2015

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In September 2014 I applied for Personal Independence Payments.  No big deal you might think, but if you've been reading this blog long enough you'll know what I went through from March 2013 to February 2014 with my DLA application/refusal/reconsideration/refusal/appeal /tribunal & as much as it's maybe tmi I don't mind telling you I almost didn't live to tell the tale, my mood was that low, finances such a mess & it being one of the most anxiety ridden times of my life.  Cutting a long story short I was turned down at tribunal after a year's fight, their reason being they thought I was ill enough to receive the benefit at the time of tribunal but I couldn't prove things were as bad back in March when I'd applied.  Rather than award the benefit from then, they said I should re-apply & go through the whole awful process again.

After the horrific year I'd had I really just couldn't face applying again & going through it all once more.  I frantically applied for jobs & didn't get so much as a whiff of an interview (hardly surprising with over 100 sick days under my belt in the past year.)  I would have given, and still would give my right arm for a solution to my financial situation not involving DWP.

Sadly new businesses generally aren't a quick fix to anyone's cash flow (probably more the opposite in fact) so I'm in a position where I really need the PIP money in order to provide any mobility aids, gadgets to make life easier & even a carer to do some of the things I can't do for myself.

So, in August I finally brought myself to apply for PIP.  I got help from Sheffield ME Group in the form of a fabulous chap named Chris who has ME/CFS himself & gives up his time to help others in difficulty.  Chris also happens to have great taste in music (we may have got a bit side-tracked chatting about rock gigs we've both been too. ;)
"We have received your PIP2 'How Much Your Disability Affects you' form.  You will be contacted by a health professional if you need to attend a consultation.  It can take 26 weeks or longer for an assessment.  You do not need to contact us unless your circumstances change."
applicationBig long application form...this isn't it, but it's what it felt like :p
With Chris' help we got the application form filled out.  If you're thinking of applying I'd recommend NOT doing the application all in one go, I was exhausted once we'd done & went straight to his bed after he left, not able to function for days afterwards.

September 12th I posted off my form & on the 17th I received a text from DWP:

26 weeks!  Yes, that's 6 months with no money before they can be bothered to even arrange an appointment to see somebody who's never met me & doesn't know anything but what the form tells them & supposedly knows better than my own GP & the many specialists I've been seeing for the past 16 years!

And breathe...

Fast forward to today, 22 weeks into those 26 weeks.  Adam very kindly called DWP on my behalf (he makes all my phone calls wherever possible because my anxiety where that's concerned makes me throw up, pass out & just triggers a whole load of symptoms, basically writing off the next week or so of my life.)  DWP passed the buck, predictably, giving the number for ATOS.  Interestingly their recorded message informed us that there was currently a 16 week wait for appointments, the advisor informing us it was in fact a 14 week wait now.  When pressed to give an estimate of how long I'd have to wait for my appointment he told us that August applicants waiting for home consultations were currently being processed & that I could expect my appointment by April, but that he really couldn't make any promises.

Basically I can kiss goodbye to any hope of an appointment within the 26 week time frame.  I can only hope that this time they decide in my favour and grant me PIP, otherwise I'm not sure I can face a further 10 months+ of potentially asking for reconsiderations, appealing & possible tribunal.  I'm trying to stay positive but it's so damned difficult with all the hurdles they put in the way...a huge chunk of me just wants to curl up & die so I don't have to go through it all again (& also so I don't have to face having to figure out how the hell to live on thin air.)

Not the most positive way to end a post I know, cross your fingers for me folks!

Miss Red x

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The ponderings of an insomniac

7/11/2014

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Gosh, it's been a while since I've been here hasn't it? *blows the dust off*

I've been laying in bed with eleventy million thoughts buzzing around my brain as usual & I was compelled to write some of it down.  Sometimes that helps, just to have it down on paper somehow means I can put a pin in it for now & get some sleep knowing if it's important it's there, written down, for me to sort out & make sense of it when I'm awake & hopefully less tired & frustrated.

The dilemma I had was, do I buy a paper diary, write in it with a pen, the good old fashioned way, OR, do I grab the laptop & write in my blog?

Then of course the questions come pouring into my head.  Do people want to read about me, warts n' all?  Do people come to this blog knowing they'll get a frank & sometimes blunt & bleak glimpse into what makes me, Donna, tick?  Should I be writing down all the things that make me me, all the ups & downs (you should probably strap on a seatbelt if your answer is yes to that) OR do people come here just to see the fluffy, sugar coated Miss Red & what she's stitched recently & how her little business is progressing?

I really don't have the answers, & that's partly why I've not written here for a while.  I've been ill, struggled with pain, with mood, there's been a lot going on, a lot to cope with, & not really much fluffy nice stuff in my life recently.  

I wish you could respond as I write this, it's tricky being stuck here with just my own train of thought for input...


I question why I'd want to write the *real* things in a blog for all to see rather than keep them in a private diary hidden from the world.  A surprisingly selfless reason pops up, I'm not thinking of baring all out of some weird ego trip or to get sympathy or solutions, part of me just thinks there may be a few people out there going through similar things who might actually benefit or take comfort from knowing they're not alone.  I'm not saying my story is the same as theirs exactly, or that I have all the answers but I'm a real person, dealing as best I can with the issues I have & I'm not entirely sure it's helpful portraying myself as some mega clued up entrepreneur who never has any problems & is always bright & breezy.  I've been open about my M.E & depression from the beginning of this blog last year & it'd be unrealistic to say that in that time I've not had some pretty dark times.

Of course, even if it is a good idea to put everything out there, this blog is attached to Miss Red, my business.  Does it help then to keep things light & fluffy here & find some other forum for the more rounded & realistic view OR are people open to taking me as I am & accepting me as a whole person going through some tough situations but who also happens to be damn good at creating corsets, designing cross stitch patterns, making gorgeous embroidery & selling great value craft supplies?

What do you think?  Please do indulge me with a response, whether it's a comment here or private message, I really do value the opinions of the people who actually read this blog.

Thanks in advance & *huge hugs*

Donna x

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    Miss Red

    Seamstress and craft addict with too many ideas, too little time and not enough spoons!

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