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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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New DMC Kits - January 2016

30/1/2016

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Brand new DMC counted cross stitch kits for January. (Rubbish health = delays) 

Gorgeous full sized Me To You & Tatty Teddy kits, with improved charts.

I want to stitch them all myself but keep reminding myself they aren't for me!

Find them here!

Miss Red x

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Corset Win - Part One

17/7/2015

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This last week or so I've been working on a commissioned corset for a friend, a black corset with silver flames, to match her New Rocks. 






 With a deadline of the 17th she'd asked me to make this corset with over a fortnight to go until it would be collected.  This is plenty of time to make a corset usually - I've made a few in a day & most in two sewing days, the time consuming part being ordering pre-cut bones once I know what size they need to be then waiting up to a week for them to be delivered.  These days I have bulk rolls of boning & just cut off what I need then add end caps.  It's a little extra work but saves a whole heap of time & money, slim-lining the whole corset making process & putting the schedule back in my own hands.

Of course, as soon as my M.E heard I was going to be busy it decided it was having none of it!  The first week was spent entirely in bed apart from my birthday* when I managed to get out of the house for a few hours.**  Week two started off catching up on all the Ebay & Etsy orders, making sure everyone who'd ordered got their goodies in a reasonable time.  Of course, once I'd made, printed, cut, packed & posted I was yet again no good to anyone & stuck in bed.  As ill as I was I knew I had that deadline looming so forced myself to the sewing machine with the help of a few extra drugs & Adam supplying me with tea & maybe a few cheeky beers.

For a limited time only, I'd managed to fight back against the M.E & get things done.  Done in smaller chunks of time than would have been optimal & whilst feeling lousy, but in my eyes I won.  I was just completing the last bit of hand stitching when my customer arrived to pick it up.

Take that M.E!

I know there'll be payback but you know what, that's fine, because for once it's on my terms.



* 21 again!  :p

**We had a lovely meal at Wong Ting, thanks for asking ;)

Miss Red x

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Day 5

12/5/2015

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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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Walk For ME

3/2/2015

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Ok. so most of you know I have ME, heck it's even in the title of this blog. I have ok days & bad days, awful years & (relatively) great years. I do try not to go on about it or complain too much but it's a huge part of my life & something I've fought against, battled with, given up hope because of, lost people due to, become defiantly determined because of, realised who my true friends are thanks to, redesigned my life around & worked to accept for the last 16 years.

This year I want to give something to help give back & to do that I'm asking for the help of my friends. *flutters eyelashes*

Walk for ME asks friends & family of ME sufferers to do a sponsored walk on their behalf. Obviously I'd do a sponsored walk myself it I could but I don't think anyone's gonna pay for me to walk the dozen steps I can manage before needing a lay down :p Basically the idea is that by doing Walk for ME you're doing something that I would love to be able to do but can't in order to raise awareness of this debilitating chronic illness.

You can see where this is going can't you? ;) Yup, I'm asking you fabulous bunch to consider joining my team to do the walk for ME. The details are down to you - despite the name you could do a sponsored walk, swim, run, hop...whatever you want & as far as you want, & whilst the suggested time to do it is ME awareness week (11th - 17th May) you could instead choose to make it a cumulative total number of miles, doing little bits you can whenever you can between now & then.

Pleeeeeeeeaaaaaase consider joining in, however much or little you can do it all helps & would mean the world to me.



I've set up a Facebook event page you can join & there's helpful info & links below the pic.

Oh, you can also get a free t-shirt for joining in! 
(Just email info@investinme.org & tell them you're doing Walk For ME once you've set up your Just Giving page)

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Walk for ME 2015 is again supporting Invest in ME and ME Research UK. For more information please visit the website www.walkforme.co.uk

If you would like to join the Walk for ME team (and we really hope you will!) you need to do the following steps:

1. Go to www.justgiving.com and click on "make your page"

2. Either log in to your justgiving account or click "No - I'm new" to set one up

3. Search for the ME charity you wish to support. Walk for ME 2015 is supporting Invest in ME and ME Reseach UK

4. Click on personal challenge and follow the online steps

5. Choose your justgiving web address

6. Click on "create your page"

7. Personalise your page. You can say who you are walking for and why you are walking

8. Then go to www.justgiving.com/teams/walkforme2015 scroll down and click on "Join the team"

9. Select your fundraising page to add it to our team!

10. You can then send your own justgiving address to friends to raise sponsorship. Any target you set on your own page will automatically add to the team target.

If you have any difficulties you can contact the justgiving support team on 0845 078 2063 or email the Walk for ME team at theteam@walkforme.co.uk

Remember: Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never share them with anyone or send you unwanted emails. Once you donate, they'll send your money directly to the charity. They'll make sure Gift Aid (an additional 25%) is reclaimed on every eligible donation by a UK taxpayer, too. That means more money goes to the charity, faster, with JustGiving. You'll see our team fundraising target on the right. Your donation can really help us smash this goal!
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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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Zombies & freebies!

11/9/2014

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Coo, getting back into the swing of things after a couple of days stuck in bed is always difficult & that was a really horrible few days.  Changing pain meds is not the ideal thing to be doing whilst trying to run a business!  I shall mostly be working in zombie mode today so forgive me if I seem a bit out of it.

Anyway, more importantly, free stuff!  If you've been reading my newsletters you'll know that I'm about to stop making them automatically post to Facebook & Twitter so that subscribers get that little bit extra.  This month I'll be doing my first newsletter prize draw, anyone who subscribes to the newsletter AND opens the email will be automatically entered into the draw each month with various different prizes on offer, from cross stitch kits to supplies, embroidered items, clothing and, well, whatever I can think of really!  The newsletters will also include subscriber only discounts and pre-sales, so if you've not signed up already, what are you waiting for? Sign up now!
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Just because I'm feeling extra generous today, I'll let you in on the secret, the prize for the September draw will be this cross stitch kit, a fab Christmassy kit featuring the artwork of Heidi.  I really enjoyed stitching it & I'm sure you will too :)

So, join my mailing list!

Miss Red x

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WIP Wednesday - Gosh it's September!

3/9/2014

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It's been a while since I've done one of these, and being poorly again this one is going to be short & sweet.

Firstly, for anyone who might have missed it, the first collaborative cross stitch piece has been completed.  You can now buy Happy Holidays Hedgehogs from myself or from Heidi Made This! in PDF pattern or kit form.
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What else have I been up to?  Well, it's Avon week for me so this:
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And in between sleeping & fainting (stupid body) I've been packing up aida, cross stitch kits, DMC threads, embroidery hoops & bobbins.  Tomorrow I'm hoping I'll be up to a post office trip before the pile of goodies gets too big to carry.
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Last but not least I've made a good start on the next Heidi Made This! piece :)

Miss Red x

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Beware of the squirrels!

29/7/2014

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...head squirrels that is.  You know them?  They're all distracting with their fluffy cuteness but if you get up close they can be quite scratchy & bitey & everything they leave behind is nuts!

I've had a right old problem with the head squirrels this last few weeks or so.  For me they come out a lot in the sunny weather, my body can't regulate my temperature so I'm feeling exhausted & in pain, which in time invites depression & anxiety to take hold, meanwhile positivity is off having a nap in a dark room somewhere.  Perfect squirrel conditions!

As most of you know my business is still just a new one, around 7 months in I'm still really building the foundation & finding you gorgeous ideal audience members...yeah, you there, I saw you drooling over that corset earlier, did you know you can have it in any size, shape or fabric you want? ;) 

I digress.

My point is, nobody expects me to have earned my first million within 7 months of business do they?  (Do they?!?)  So why, when the squirrels invade, do I think I'm useless at this whole self employed lark because all I've managed is not to go into overdraft? NUTS!!!  

In reality, my last wage was over a year ago & I've supported myself since then.  How many people could truthfully say that if their wages stopped tomorrow without warning they could survive a year without outside financial assistance?  My guess is not many!

Yes, it would be fantastic to be living comfortably & never to be thinking "jeez, I really need to get a proper job" but I'm hanging on in there & I have A PLAN & I'm not going to let the squirrels win!

I do have a teeny tiny favour to ask to help me out a little, & I suspect those of you who haven't stopped reading already are just the kind of lovely people who will help me out.

What's the favour?

If you see something from Miss Red you like or know someone else would like, share it. 

You can tell just one other person about it, shout it from the rooftops, plaster it over the whole of the internet but pretty please with cherries on top, don't keep it to yourself. 

You could start my sharing my Facebook page, Twitter, the website, the newsletter or even just a particular product.  It'll probably take about 30 seconds, you could do it right now ;)

Thank youuuuuuuuuuuuu!!!

Miss Red 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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