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. ;)

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!

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*

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!

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!

I'm not normally one for posting about dead celebrities but my respect goes out to Robin Williams making it his life's work to make the world smile whilst battling with depression himself.  

His apparent suicide is a loss to many & the probable cause close to home so I won't say more, I'll just leave this here:

This time last year I'd just received my final wages from my last job.

I'd started as a temp at this government quango & after a year of glowing reports, pay rises & contract extensions I was *promoted* into a permanent role.  Much as I missed teaching I knew my health wasn't up to a full time teaching role so begrudgingly accepted, relieved that my financial situation would at least become stable.

Little did I know it would all be downhill from there, the new role being nothing like the temporary roles I'd done & essentially turning me into a phone monkey.  No offence meant to anyone who works in call centre/contact centre, in fact hats off to you!  As someone with severe anxiety issues & a phone phobia I'd never have accepted the post had I been aware of the change in role!  I approached my line manager who assured me despite being put through phone training I'd soon be back in my administrative post because it would be a busy period for my team & I knew more about the process than anyone on the team (including/especially her!)  Of course just a couple of months later it'd be my word against hers that she'd made these reassurances & she'd convince management that I'd known all along what I was agreeing to when I accepted the job.  (8 hours a day on the phone being told when I'm allowed to leave my desk & watching bimbling idiots around me stuffing up the job I *used* to do really well)

After 5 months off ill followed by being pushed too hard on a phased return & being ill again occupational health & other medical professionals were unanimous in the decision that redeployment was the way forward.  Shortly after this decision was formalised I was brought in for a *redeployment* meeting.  Allegedly there was no position to move me to, despite hiring 3 new staff members to carry out the job I'd managed without illness and with glowing reports for several months.  Since I'd already had my trial period extended by three months it was decided I was incapable of carrying out the role I was hired for (no shit Sherlock!) so therefore I no longer had a job.

Obviously it hadn't been my ideal job but it had been my lifeline for almost 2 years & to suddenly just stop having any income came as a shock as well as causing many sleepless nights & exacerbating my ME .  Having already been turned down for DLA (but in the process of appealing it) I had no idea how I'd pay the bills & no optimism where new employment was concerned with over 100 sick days under my belt.  Already in a very dark place it did nothing for my mental health either, it's very difficult trying to see a silver lining when even somewhere you don't want to work but slog your heart out for doesn't think it's worth giving you a break.

What doesn't kill you makes you stronger apparently ;)

Just lately when I've started talking to new people "oh, you're so lucky" has been a frequent response when I tell them I'm self-employed.

Well, the short response to that is "hell no!"

The longer response?  Lets see, I've battled for years with my health & struggled to hold down jobs my entire adult life because my M.E means I have more sick days than the average person.  As a (terminally) single woman there's never been anyone to support me financially so working part time was never really an option.  The result - working myself to death in temporary roles until I just can't work any more then having to move on & start all over again.  Oh, and don't forget the gruelling doctor/hospital/dietician/psychologist/specialist schedule in my *spare* time!

After 14 years of fighting each & every day to stay afloat I decided enough was enough.  No employer is going to give me a job that fits around my health.  DWP aren't going to support me in any way because, unlike employers, they believe being able to walk from my bed to the loo on a good day means I'm perfectly capable of holding down full time work.

I decided to set up my own business.  I did the research & courses needed to get up & running.  I searched for funding.  I went to trade fairs, put in the hours of hard work making things & perfecting my skills & tracking accounts, networking & finding out what people wanted & would buy.  I bought stock & supplies instead of food & a social life, ME!


So hell no, I'm not giving luck any credit here!  This didn't just happen to me while I sat idly by, I made all of this happen.  I work damn hard at what I do & will continue to do so because I'm passionate & motivated & sooooo stubborn that I refuse to let this fail (despite the fact that even writing this post has taken me 2 hours because my wrists & back ache too much to do it all in one go)  

I love my work & I love that the credit all belongs to me & the fantastic customer base I continue to build along the way ;)  

Just for me, next time your brain tells you that you can't do something because it's too difficult, give it a little go anyway.  You might be surprised what you CAN do!

If you're here for the cool craft goodies & don't want to know about the depressing disability stuff you may want to skip this one.  Everyone else, thanks for reading ;)

When I applied for Disability Living Allowance in March 2013 I had no idea whatsoever I'd be waiting almost an entire year for a straight yes or no.  Yesterday was my tribunal, having asked for explanations & reconsiderations, getting back up information from doctors & health care professionals...and most of all waiting...LOTS of waiting!

Anxiety is a huge trigger for me at the best of times, I feel dizzy & sick & I faint & can't breathe at the most trivial-seeming things so as you can imagine I was a bit of a mess going into this whole thing & only decided to ask for an appeal because so many decisions get overturned when showing up in person.  Because of all of this I elected my best friend as representative, thinking they'd then allow him to do all the talking & I could just chip in for anything he couldn't answer...so you can imagine my reaction when they decided to tell me this wouldn't be the case!  My representative becomes another observer, another person to look broken & ridiculous in front of, an added pressure rather than a relief.  Thanks!

I'd requested a disabled access room (though why they don't automatically use those for DLA tribunals I have no idea), so was quite frustrated when the clerk asked me if I could get out of my scooter & walk into the room because of the narrow doorways & tight turn to get into the room.  Thankfully my scooter is fairly narrow with a really good turning circle so I managed to get in & out of the room with only a few little door frame bumps.

In the room along with the clerk I was introduced to the judge, doctor & care specialist, the latter being a trainee so came with an additional observer.  Not a pleasant number of complete strangers getting to decide my fate, aargh!  As much as they say it's informal & they're all nice you can't help but feel they're just trying to trip you up & make you say the wrong thing.  The trainee care specialist in particular was very leading with her questions & extremely accusatory, at one point even earning herself what looked like a *you overstepped the mark there* glare from the judge which shut her up briefly before she went on to tell me how I should buy incontinence pads & a bed protector & a different sized chair for causing myself more kitchen injuries & adapted utensils...the list went on & needless to say none of it was affordable without the DLA money.  Despite asking if my condition was about the same now as it was in April & deciding to ask me lots of questions about now as a result, they managed to come to the conclusion that my condition is worse now than a year ago.  A year ago when I had failed to manage to get back to work even on phased return & was back on long term sick, when I was bed ridden most days, when I was completely cut off from my social life & when it was deemed necessary to redeploy me at work because I couldn't physically or mentally manage to do my job.  *As an aside, I also worked alongside 4 people diagnosed with various chronic conditions who did fine skipping around the office working full time unsupervised yet somehow all qualified for DLA. 

To cut a long story short the whole thing was awful & the final decision was to refuse me again.  In their opinion my condition has worsened since I applied, so whilst they agree I should get it now, presumably they believe it wasn't bad enough for me to need DLA at the time of the initial application.  The result of this being I get nothing whatsoever for the last year, regardless of them thinking at some point during that time my condition has become sufficiently bad enough to qualify.  There will be no back pay to the time they think my condition worsened & going forward all I can do is apply for PIPs from now.  There is the option to appeal to upper tribunal but right now I feel wrecked & broken & couldn't go through something like that (I'd genuinely rather throw myself off a cliff than endure anything like that again.)  Do I want to go through another year of this crap & attempt to get PIPs?  Not really, but with a start up business to run & a mortgage & bills to pay I can't afford not to at least try.

So, to anyone in the process of applying for similar benefits I reckon the cynic in me has to suggest you embellish, exaggerate & whine to the maximum, hell, even lie if you need to...because being ill, cut off from the world & prisoner in your own bed just isn't enough to get a few measly quid to help you function!

Those of you going through this (& I know several are), I genuinely hope you have a better experience than I have & that you're treated more fairly & are given what you deserve.  I'm sending good luck vibes your way.

*huge hugs from me*

It's that time again.  Time to get all reflective and look back over the year that's just ended, take stock, learn lessons, plan for the next chapter.

If I'm honest 2013 started on a low and set the tone for the year. I was ill and cornered into a job I hated that was only making health matters worse and worse.  Fast forward to July and I was finally driven out, abandoned under the guise of there being no suitable job for me despite hiring 3 people to do exactly what I was commended for doing so well less than a year earlier.

Health-wise it's all taken it's toll, my symptoms have been as bad as they ever have been, for longer periods than ever before...my biggest regret being the resulting neglect of the people I love most. 

Financially it's been a huge struggle, battling at every turn to get what I'm entitled to - and of course some of those battles continue into 2014.

BUT...

Somehow looking back on a hideous year find clarity and maybe even a little positivity.  I'm not completely out of the shadows of course but going into 2014 I'm armed with some really useful tools.  I'm learning how my body works, how to be gentle on myself so it doesn't rebel quite so much.  I'm accepting what my new limits are (though of course I wouldn't be me if I didn't try to push those!) and I'm realising once again how amazing some of the people around me are.  I'm trying to stop punishing myself for not being able to have the career, or indeed the life, I'd set out for myself and I'm realising that what I'm doing now is every bit as worthy of self-pride as my teaching career ever was.

In 2014 I am my own boss, I'm taking back control of my life and boy does that feel good!

Every one of you guys reading this from the start of my little venture has helped me get where I am (though you could help even more by heading off after this by buying my stuff and signing up to the newsletter ;p ) I am truly grateful to you all and wish you a

  Happy New Year!