All Change – Part 3

Well hello again, here I am back for another thrilling instalment of my relocation saga (I promise, if anyone is actually following this, it will just be a few more posts)

As a quick recap, when I left you all last time it was the beginning of November and I had just submitted my PIP application form with some help from the DWP (due to shopping trolley induced wrist injury) and was also looking for a new job to get me back into my career and working in Central London.

A few weeks went by after submitting my PIP application, during which I applied for numerous jobs but nothing that really got me excited. I was also trying not to get too stressed about the PIP application (with hindsight I am pretty sure that those closest to me would happily confirm that I wasn’t doing such a great job of that).

I then received a letter from ATOS Healthcare informing me that I was required to attend a PIP Consultation on Thursday 17th December at my local dedicated Consultation centre. This now gave me 3 whole weeks to stress myself into oblivion but thankfully the next week I applied for what sounded like a great job and was offered an interview for the following week so I was able to focus on that and try not to panic about the PIP stuff.

Now without wanting to blow my own trumpet I am pretty good at job interviews mainly as I’m one of those weird people that actually really enjoys them, yes I know I’m a sick and twisted individual, but I find them interesting and whether they go well or not I find the experience very useful.

So, I threw myself into researching for my interview as I had a really good feeling about this job, the location was good and the setup sounded great. The Job Interview was scheduled to take place on Friday 11th December and it went fantastically well, so well that I was invited back to meet the Director of Sales the following Monday. This also went incredibly well and resulted in an afternoon meeting with the team to see if  we all gelled.

After seeing the team a further meeting was arranged for me to meet the general manager. In-between these meetings I had my PIP consultation which was so much more stressful than a multi-stage job interview.

The PIP consultation was arranged for 9am Monday, so, following a sleepless night due to stress and pain. I headed off to the consultation centre. The first thing I realised upon arrival is that everyone appeared to have been given the same appointment time and the place was full of people all waiting patiently to have their fate decided by a stranger. After more than an hour of waiting and watching several people query appointment times at the reception desk it became apparent that they were experiencing  some major delays but as there was no explanation forthcoming there seemed little choice but to just wait patiently (not naturally my strong point).

Eventually at about 11:30am my name was called and I was escorted to the consultation room, the lady who conducted my assessment was not a doctor but instead a paramedic who was quite dismissive and not overly interested in my answers to her many questions. Now for any of you that have been through this process you will be aware of how emotional these things can be, but for those that haven’t the questions they ask are not always based on the physical aspects of your condition (or conditions), they also ask about their emotional impact.

That, combined with the fact that you are having to face your disability in a very clinical and brutal way as well as doing whatever physical tests the assessor deems necessary, means it can be incredibly upsetting. As a result my assessors questions coupled with her seeming indifference and dismissal of my answers proved too much for me and I spent most of the assessment in tears, after all these years I still find it hard to talk about how badly my body has let me down and the day to day limitations this forces me to accept.

The entire process took just over an hour and at the end I was slowly escorted back to the reception area and told that the report would be written up to be sent to the DWP and I should simply await their decision. I then headed back to the car, once I had stopped crying and managed to calm myself down enough to drive I took myself home and collapsed for the rest of the day as I was both emotionally & physically exhausted.

To be continued...

All Change (Part 2)

Firstly please accept my apologies as it’s taken a little longer than planned to get this next post together as to be honest I’ve been struggling, feeling quite isolated and didn’t want that much negativity to show thorough in my writing as let’s be honest that can be hard work to read and the last thing I want to do is bore the pants of anyone that stumbles across this blog.

So now to pick up where I left off in All Change (Part 1) with a quick recap:

In October 2015 I was sent a letter instructing me that I was being transferred from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) but that this would require me to reapply for the new PIP benefit as there was no guarantee that I would get the same award. Now on the old 3 tier DLA system I had been awarded the Higher Rate for Mobility and the lower rate for personal care and with the mobility element I had managed to get myself a car through the Motability Scheme and this had truly allowed me to regain my independence and had meant that I was able to return to my career in the hotel industry which I absolutely adored and after a few hiccups I had now started to look for an opportunity to return to working in Central London and although it was bloody hard work the positive effects on my self esteem and mood made the exhaustion and increased pain well worth the effort and I was starting to feel like a pretty valid member of society again(albeit a very very tired one). 

So having received my letter from the DWP I called them as instructed to begin my new claim and was told they would log my intention to claim and send the forms out for completion. In the week or so that it took for my forms to arrive I managed to reinforce my clumsy klutz status by injuring my right wrist in an unfortunate collision with a shopping trolley while attempting to buy salad, and so by the time the forms arrived I was unable to complete them myself due to the fact that I am right handed and was in a rigid wrist splint, so I called the DWP again to explain and see if there was any other way that I could submit my claim and after about half an hour of being made to feel like a lonely loser for not having anyone local that I could ask to help me they eventually agreed that a local DWP officer would be able to come to the house and complete the form for me. A few days later I received a call from a very helpful man from the local DWP office and we agreed that he would come to my flat the following Tuesday to assist with my form.

When the DWP man, let’s call him Peter because I can’t for the life of me remember his name, arrived the following Tuesday as agreed he was incredible polite & helpful and assisted me in getting my form completed. Now these forms often leave me tearful and feeling quite sorry for myself as they mean I have to confront my disability and be brutally honest about my capabilities and that’s something I spend so much of my life trying to overcome that facing it head on in this way never fails to unravel me. However I tried to hold myself together as I asked Peter what would happen next with my claim and he explained that my form would be sent to the assessment office and they would either make an instant decision on my claim or contact me to arrange a medical consultation to provide further information. He also added that in his personal opinion he hoped they would arrange a consultation as he felt that would be my best opportunity for a successful claim. And so I waved Peter off with a tiny flutter of hope and continued my hunt for the ideal job to get me back into the big city.

To be continued...

All Change! (Part One)

Well I hadn’t planned for my follow up instalment to take quite so long to materialise but unfortunately there has been rather a lot going on that has kept me away from my keyboard. As with everything there’s a long version and a short version of events but this would be a pretty rubbish post if I just went with the short version so I’m going to try not to bore you all with too much waffle and break this epic down into bite size chunks over the next few days.

One of the main things that happened is that I have moved house from my tiny little first floor flat in Essex, just 30 minutes from London, to a larger ground floor place in a sleepy market town in Shropshire, just a five minute hobble from my parents. Oh, I hear you cry, that must be lovely, rural bliss in the bosom of your family! Well you’d think so wouldn’t you? But in truth, while I love my family dearly, my new flat is really lovely and much more suitable for my needs, this move wasn’t really my choice. I’m sure that in time I will adjust, settle and probably be very happy but while I’m waiting for my happy ending I have to get my head round the circumstances that got me here and deal with all the other consequences of that life changing event.

It all started with a letter. 

Back in early October last year I received a letter from the villain of this piece, the DWP, stating that my claim for Disability Living Allowance (DLA) was due to end in February 2016 but as the government were making huge changes to the benefits system I would not be able to renew my claim.

Instead I would need to reapply for the new Personal Independence Payment (PIP) that is replacing DLA. At this point I should mention that I had been claiming DLA for a number of years with the higher rate mobility component and low rate care component. After moving from London to Essex in 2010 I finally plucked up the courage and got my driving licence (mainly out of necessity as accessible transport is not a big thing in Essex and in order to have any semblance of independence I really needed to be able to drive) and with my shiny new license I used the mobility element of my DLA to reclaim my mobility with a car leased through the motability scheme. This car totally changed my life. Suddenly after years of having to rely on others to get me to hospital appointments, supermarkets and everywhere else I could now get to places myself, this newly rediscovered freedom had a huge effect on me. I started to get my confidence back after years of feeling dependant and isolated, I finally started to feel  like myself again, believing that maybe I did still have something to offer the world. 

Now back to the story so far, I had heard plenty of unpleasant murmurings about this new PIP benefit, but I tried to silence the alarm bells and stop the panic as I followed the instructions in the letter to begin my claim for Personal Independence Payments, naively believing that PIP was designed to live up to its name and help me maintain my independence. 

To be continued...

Well hello there, pull up a chair, now are we sitting comfortably? yes? then I'll begin...

Well hello there and welcome to my little corner of the universe. I suppose as this is my first blog post I should start by telling you a little bit about myself and how the idea for this blog came about. 

Hi! I’m K a 40 year old, fiercely independent, woman who much to my annoyance has been severely let down by my own body over the past 10 years following on from, what on paper at least should have been a fairly minor accident. My aim with this blog is most definitely not to continually bleat on about how terrible my life is or how horrible it is to be disabled, because quite frankly I’m fairly sure you can work out for yourselves that being disabled sucks! However regardless of that my life isn’t terrible and I don’t spend huge swathes of time feeling sorry for myself or trying to elicit sympathy as that’s really not my style, I do however face prejudice and injustice on a pretty much daily basis and while some of that is amusing and can be laughed off some of it is totally life changing and has massive knock on effects and if putting those experiences out there into the world makes people think about, talk about or even just acknowledge these then I guess I’ve done a good thing.

Now for the technical bit, I’m most definitely not going to go all ‘Medical Textbook’ on you but the main reasons for my disability stems from a combination of different, but in my case, interlinked conditions, the main two of which are Ehlers Danlos Syndrome (EDS) and Chronic Regional Pain Syndrome* (CRPS) although just because my body appears to think that’s not enough to deal with there is also a borderline Multiple Sclerosis (MS) diagnosis and a, thankfully, mild case of Postural Orthostatic Tachycardia Syndrome (POTS). Now as I have absolutely no medical training whatsoever, I didn’t even manage the First Aider Badge at brownies, I’m not going to attempt to explain any of the complicated medical stuff but will put links at the end of this post to websites that I found helpful when I was researching my diagnosis and trying to get my head round it all.

In the interests of clarity and because let’s face it I like a good waffle, I shall bore you all with a little bit of background info about my life. Growing up life was pretty unremarkable, Dad was a farmer so I had what many would call a fairly idyllic childhood on a farm in the middle of nowhere. We were your average family, consisting of Mum, Dad and 2 daughters with me being the eldest. Looking back now there were a few signs of future health concerns but that’s only with the benefit of hindsight which as we all know is a wondrous thing. I was a very clumsy, accident prone child and it was pretty much a running joke in our house that I practically had my own dedicated cubicle in the local A&E department but as I was quite an adventurous ‘Outdoorsy’ kind of girl this didn’t seem particularly unusual and so largely went unnoticed. I remember spending quite a large amount of time either in plaster casts or with various bits of me bandaged up but on the whole it didn’t really slow me down and life carried on in the usual fashion.

I moved away from the farm and my family in 1994 just before my 18^th birthday and buggered off to London to pursue a career in hospitality. I have always been pretty career minded and so really threw myself into work and into London life in general, my basic principle has always been to work hard & play hard so the big city suited me down to the ground and over the years my career progressed really well. Then in October 2005, in fact to be precise it was Monday 10^th of October, not a date I’m ever likely to forget, I was on my out of work heading towards the pub with my colleague when I tripped while crossing the road. Now a simple trip doesn’t sound like a big deal and honestly it certainly isn’t anything out of the ordinary for me, I mentioned clumsy earlier didn’t I, this fall however turned out to be not so simple and set off a chain reaction of events that saw me having to retire from work due to my health and after some truly horrendous experiences with the NHS lead to my diagnosis and my eventual acceptance of the fact that I will never have another pain free day and no matter how much I like to deny it I have also had to come to terms with certain limitations that my body has imposed on me.

For now I think that’s enough of an introduction, as while I have many more stories to tell about my adventures I’ll save them for future posts.

*just to complicate matters father this was formally known as Reflex Sympathetic Dystrophy (RSD)

Useful Links for more information about the medical stuff

Ehlos Danlos UK 
NHS - Complex Regional Pain Syndrome 
MS Society 
POTS UK