M.E and my #ATOS test…

Today I had my dreaded medical examination with ATOS in Luton.  I arrived on time, thanks to The Mothership chauffering me. She couldn’t get parked anywhere near the centre (which has NO designated parking – what a massive fail that is) so she drove to a side street and I went in alone. 

I was in a great deal of pain today, mostly due to my neck flaring up and so the receptionist let me sit down and she came out of her office to “book me in”.  After a 15 minute wait, I was asked to walk down a long corridor to meet Dr D.K.Mallick.   Dr Mallick was lovely, which really surprised me as the last “Dr” I saw there was extremely cold and defensive with me. 

He began by asking me about my recent foot operation, moving on to cover my last employment, medication, Chronic Fatigue Syndrome, Home life, neck problems and Mental Health.   This took over 3/4s of an hour. It should have taken half of that time.. The reason?  The computer system for Luton and several other towns (names escape me but they were local), has had “issues” since December.  Where they used to handle 10 claimants per day, now they are lucky to see 6.  At one point he was so frustrated and embarrassed he threatened to walk out in protest.  I am pretty sure it is a “sharing” issue as the form he fills in is online.  Possibly the broadband speed needs increasing. Anyway, I’m not a computer expert but it’s pretty much fucked up borked.

Dr Mallick skipped through a few points (including the physical exam) as he was so stressed and could see I was in a lot of pain. He did have a look at both of my feet though and told me that I would probably be called back in 6 – 12 months.  Luckily for me, I won’t have to go back as I have been offered a job working from home.  My Fabulous New Bossman (FNB) knows all about my health issues and is happy for me to do what I can, when I can.  I have, for once fallen *on*  my feet instead of falling because of them! 

Something struck me though during the process, he kept referring to CFS in a “mental” disorder, rather than a neurological condition. I called him out on this at the end of the session and he explained that the computer test is set that way.. However, this link from @latentexistence   clearly shows that CFS is regarded as a physical condition for DLA claimants. I hope that when the current ATOS test is reformed, this is corrected.

Although my examination went well today and the good Dr told me that I should have passed with no problems, the ATOS test is badly managed.  Claimants who should be exempt are still being called in, the current test is a “tick box” one which is simply not working. 

Please sign the petition below if you care about this important issue.

http://www.gopetition.com/petitions/sack-atos-healthcare/sign.html

Want to make an FOI request about ATOS? Click this link: http://foiwiki.com/foiwiki/index.php/Main_Page

****UPDATE***

Whilst I gained enough points to qualify for ESA, I was added to the “Help back to work” group and an interview was arranged for me at the Job Centre.  I never made it to the interview however as I was lucky enough to be offered a job by my neighbour.  I have been working for him ever since and am SO grateful to him I can’t tell you, nobody else would have given me such a chance with my recent sickness record (and another operation pending).   I now have my dignity, a decent standard of living (despite what some say, life on benefits is REALLY hard) and I met a lovely man who fell in love despite my very attractive boot ; )   I know I am one of the lucky ones but I promise to keep fighting for the rest of you who are being so very badly treated by this government. Much love, HC x

Plates of Meat – Part Four – Changes…

 

Humph's little piggies 2 weeks ago...

 

Last week I had a Lapidus 1st metatarsal / cuneiform joint fusion with Kessel Bonney osteotomy of hallux and a Cartiva synthetic cartilage implant or in other words, my big toe was broken, a piece of bone taken out from it which resulted in it being shorter, bone overgrowth was sawn from the top of the joint, a metal plate and screws were affixed to force my foot to perform properly and a piece of fake cartilage was implanted to protect the joint from further wear and tear.

Check out the sexy footwear, these are sure to be a big hit on all the European beaches this year ; )

*awaits wolf-whistles*

But whose foot is this?  I knew it would look different but was unprepared as to how alien the toe would look. It is short and stubby and points upwards now, like a little ski-jump nose.  It isn’t mine, I think they have made a mistake and sent me home with the wrong one, or does that just happen with babies in bad might-be-reality-but-might-be-made-up shows? I suppose I could give it a chance, wash and dress it and see if we bond.. maybe I will even grow to care for it and paint it pretty colours.  Or maybe I will just turn my back and hide it from myself and everyone in the hope that if I ignore it, it will go away.  Either way, I’m stuck with it and it is stuck with me and I have to accept that my “toe-sucking” days may be over. ( Honestly, you should try it but do your best not to think of Fergie or it will all go horribly wrong)

Ouch..

 

This little piggy went "weeee.."

 

Tee hee, check out the pen marks from me scratching under my bandages, the Mothership thought it was my veins sticking out, gross.. !

Plates of Meat.. Part 3 (warning, contains grossness)

After frantically cleaning everything in the house, whether it moved or not, I went to bed early and fell straight to sleep. Aided by sleeping meds I managed to sleep all night without nightmares of the surgeon taking my whole foot off or operating on the dog instead. I woke up and went on auto-pilot waiting for my sister to collect me.  Kissing the kids goodbye whilst they were still tucked up in bed was unusual, they are normally up and about, shouting and destroying the kitchen while I stay hiding in bed waiting for the house to sigh with relief as they depart for school with a final bang of the front door.

It was still Dark O’Clock when we arrived at the *private Spire hospital, Harpenden and “checked in”.  We felt like we were going on holiday as a porter took us to our room and arranged for tea and a newspaper to be brought to us.  Private hospital’s have carpet rather than smooth, shiny floors and so smell of carpet cleaner instead of toilets.  They also have free tea and coffee, soft loo roll, garden views from the windows and an air of relaxation.  It was hard to feel anxious in such a lovely place : )

My "room"

Hospital wouldn’t be hospital without a bustling Irish woman though, ours was Mary.  She clucked around me taking my blood pressure and measuring me for a massive pressure stocking, might keep that for next Christmas 😉  I mentioned my sore neck to her and before I knew it she had arranged for me to be taken down for anesthesia first as she didn’t want me sitting around being uncomfortable all day 🙂

I’ll be honest, this is the part that I had managed to completely blank from my consciousness during the ten month’s while I waited for the operation.  I had been worried and frightened by what comes after but had never dared imagine the actual operation itself. Just as well really, horrific is the word that springs to mind.

I nearly jumped for joy when my anethestist came for me, it was Sarah, the nurse I had seen twice before at Dr Bramall’s clinic.  Relief swept over me at the sight of her familiar, friendly face and any anxiety that had built up since arriving disappeared in a heart-beat. She took me down the corridor,  with me wearing not much more than a smile and my new “grumpy but gorgeous” robe and set about numbing my foot.

Sexy Stocking...

OMFG.

I don’t know what I had expected, as I said, I hadn’t given it much thought at all but AGHHHHHHHHHHH blimey the pain!  I think in all I had 15 injections in my ankle before it finally went numb enough for surgery.  I am good with pain though and tolerate it well so concentrated on my breathing like a good girl and imagined the tweets I would be sending had I been allowed my phone with me.  The woman in the next bed to me wasn’t nearly as brave as Humph though, screaming and flailing about like a man big sissy.  I heard that she didn’t cope at all well with the surgery either, surely a sedative of some sort would help patients in these circumstances?

Once properly numb I was wheeled into what looked like the “TV Room” on Willy Wonker, all white with massive lights on arms like the ones dentist’s have.  To my immense relief a screen was put up so that I could not see what was happening to my foot. I know it was washed with iodine though and put through layers of cloth, leaving just my foot sticking out, propped up with a pillow underneath.  It was then tourniqueted to within an inch of it’s life and several green-clad people arrived.  Were I of a nervous disposition I would have been blubbing by now, there was no distraction other than a magazine which was pushed into my hand.  Sorry but while having my foot sliced open I found the private lives of the disaster who goes by the name of Kerry Kantona only slightly less nauseating than the thoughts I was trying so desperately to blot out.

The nurses were milling about and one even took orders for lunch whilst discussing how straight and perfect my toes were, the deep , plummy voice of Dr Bramall said “straight but stiff”.  Then I could hear bone breaking and realised it was mine. The sound of a drill vibrating on bone, mine.  The only way I could cope was by mentally picturing the faces of my loved ones and trying to remember the lyrics of a beautiful song I saw tweeted a couple of weeks ago. Over and over I repeated them until after an hour I know the song by heart and the surgery was finally over.

"Phew"

Dr Bramall pulled down the drapes and showed me how to exercise my toe, I was fixated by it’s waxy, corpse-like yellowness. There is a long incision from the first toe joint right down to my heel, I think it will look lovely with flowers tattooed along it : )  A load of notes were plonked on my tummy and I was wheeled back to my room to re-join my sister (sleeping like Goldilocks in my bed, cheeky mare)  Sandwiches and tea promptly arrived via the clucking Mary who took my blood pressure again and called me her Pet : )

Then rest… two hours later, after the physiotherapist has shown me how Dr Bramall wants me to walk with the crutches we set off home, being wheeled expertly to the entrance by another lovely porter. Home at last but can I get in?  I have two steps up to my front door and then a raised plastic door frame to negotiate, Mum and sister end up half-carrying me in!

Tune in next time to find out just how much of a numpty Ms Cushion really is…..

* Just in case a certain MP leaps on the fact this was a private hospital, whilst the hospital is private, the operation itself was via the NHS

Plates of Meat – Part Two

Got my head together now, the shopping is done, house clean and tidy, lists written.. the only thing I havent done is the ironing which can go f**k itself frankly 😀

I am now back at the stage where the operation itself doesn’t faze me in the slightest, it will be like a long dentist visit, I am still wrestling a little with the recovery though. This is for two reasons.. one is just good old-fashioned vanity, I have always had lovely feet, they are one of my best features. The Mothership made us wear Clark’s “Mary Jane’s” and so my toes are all in a perfect diagonal line.  By this time tomorrow my big toe will be the same height as it’s neighbour 😦   I know it’s silly but I really hate that although I will have to buy new, smaller shoes.. *perks up a bit*

The other reason is worry about my neck. I am to use crutches for 8 weeks. Although my feet hurt 24/7, most of the pain I suffer is in my neck, it cripples me. Any use of my arms or head sets off the pain.  Quite how I will cope with crutches is beyond me.  I spoke to my GP about it last week who is chasing up the physiotherapy I ve been waiting for since August.  He suggested I speak to the hospital tomorrow, which I will do. 

My lovely neighbour has offered to source a wheelchair so that she can take me out,  she is TINY, quite how she will cope with pushing me I don’t know! I have visions of her puffing and panting, beetroot red with effort and me ending up stranded until a big strapping man can be found to save me.. ooh, now there’s a thought ; )

I’ve taken some pics of my feet as they are now, I’ll probably blog from the hospital tomorrow and definitely take more photos as the weeks go on.  It will be a big help I think for others having the same operation.

Right, I’d better go sort that ironing out!  *searches for a big hole to drop it in*

Plates of meat… part one.

Blugh, I SO do not want to write this post..  Why?  Because I don’t want to think about my feet and in particular, my forthcoming – longed for, way-overdue operation.  However, I think it is important to document my feelings/pain/recovery/experience in this way as it may help others in the future.

My name is Humphrey, I am brave and strong! I am not afraid of ANYTHING!  (with the exception of nasty stuff happening to my family) Always the first to enter into dangerous situations, memories of derelict Spanish houses come immediately to mind! I’ve had three children “the old-fashioned way” with just gas, air and ridiculous panting to get me through. So why, oh why am I so nervous about my operation?  It’s ridiculous, I can’t even read the literature the Surgeon gave me. I have made very vague plans for transport, after-care etc, I have pretty much blocked the whole event from my terrified mind.

OK, focus.. the operation itself is to correct deformity in my right foot.  My foot first started troubling me when I lived in Kent in 2009, it was just a sore toe, didn’t think much of it.  I had to have a full body scan for suspected arthritis that year, it showed up in the big toe on my right foot.  It has been a long, hard slog getting a date for this operation, originally a much less invasive on which was scheduled for May 2010.  Following the removal of accountability to the 18 week waiting lists, my operation was abandoned and I was left hanging on the list..  My foot has deteriorated a lot since then through usage (although I’ve been very careful not to walk/stand much since last June) and it now requires different, more serious surgery.

*breathes*… the surgeon is taking a piece of bone out of my big toe, just before the big joint which has bone over-growth on it, preventing it from moving.  He will also remove the overgrowth and possibly the joint, depending on how eroded it is.  There will be a metal plate put in to stabilise the foot and maybe some fake cartilage.  This is all designed to force the foot to perform properly and prevent it “rolling” to the right.  In time my left foot will need the same treatment. 

It is really odd, nobody else in my family has had problems with their mobility, save for my little niece who has a form of cerebal palsy.  I am certain that my condition has been brought on by Rheumatiod Arthritis, this has yet to be confirmed although my hands have been diagnosed with mild arthritis and my neck has “wear and tear”.  I am due back with the Rheumatoligist in March, hopefully he will test me for RA and take new X-Rays of my neck, I have been in severe pain with it for almost a year!

Back to the feet…  Today I collected my post-surgery painkillers and received my hospital “check-in” letter.  Sunday I will go shopping, topping up all the essential items and buying lots of pro-biotic yogurts.. I will be on anti-biotics for a week or so and they always seem to wipe me out completely, due I am sure to lack of good bacteria.  That’s my theory anyway : )

I’ll write more about feet in general and post some pics of pre and post surgery as the week goes by but enough for now.. *puts operation thoughts back on a floaty cloud and blows it skywards*

2010 in a coconut-shell…

2010 was weird and wonderful in equal measure.  As I lost my mobility and personal freedom, I gained Twitter and blogging.  Twitter gave me company and self-esteem through a horrible year, I have even made real-life friends through it, “tweeting up” locally and in Derby. Blogging kept me sane and allowed me to explore writing styles and share my sense of humour in bigger doses than I could do on Twitter (sorry about that 🙂 ).

The Eurovision and World Cup gave me the best laughs of the year as I was inspired to make avatar pictures to represent each country. Eurovison night itself was a massive challenge as I had to change profile picture 25 times! 

Eurovision Avatars!

 

World Cup Avatars

 

Throughout the year I raised awareness for many different causes.  I got myself into a LOT of trouble with my local MP who “outed” my real name, much to my dismay. I really like being Humphrey!  Then, in November I won two Twitter awards, which I am incredibly proud of.

I also cried a lot, more than I have done since I lost my father to cancer.  I cried through sheer self-pity, pain, frustration, anger and loss. Coming to terms with a disability is one of the hardest battles I have ever had to face. I am still dealing with it, every time I look at my feet in the bath I imagine how they will look with their scars and shorter big toes ( first operation is 25th January *shudder*) .  I love my feet!  Always so proud of them, with their elegantly sloping toes and dainty nails.  I think I will have them tattooed with flowers when the surgeon has worked his magic, to cover the scars and make them pretty again : )

Not much else happened through the year, I had a couple of dates, annoyed some people, lost two cats, gained another who is my darling : ) 

Jasmine & Pickles

So, yup!  That’s just about it..

Here’s to 2011, may it be filled with knowledge, wonder, laughter, moustaches, love, excitement and joy!

On the first day of Cripmas… #disability

.. the Coalition gave to me…

The Broken of Britain proudly present Imana (11 years old) singing “The Twelve Days Of Cripmas”

Twelve Days Of Cripmas Lyrics by @Hossylass :

On the first day of Christmas the Government took from me the right to peace and harmony.

On the second day of Christmas the Government took from me,
social standing,
and the right to peace and harmony

On the third day of Christmas the Government took from me,
my I B,
social standing, and the right to peace and harmony.

On the fourth day of Christmas the Government took from me,
my contributions,
my I B, social standing, and the right to peace and harmony.

On the fifth day of Christmas the Government took from me,
my bu-us pass,
my contributions, my I B, social standing, and the right to peace and harmony.

On the sixth day of Christmas the Government took from me,
rights to housing,
my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony.

On the seventh day of Christmas the Government took from me,
mobility in care homes,
rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the eighth day of Christmas the Government took from me,
5 years of pension,
mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the ninth day of Christmas the Government took from me,
council funded care,
5 years of pension, mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the tenth day of Christmas the Government took from me,
All my DLA,
council funded care, 5 years of pension, mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the eleventh day of Christmas the Government took from me,
Independent Living Fund,
All my DLA, council funded care, 5 years of pension, mobility in care homes, rights to housing, my bu-us pass, my contributions, my I B, social standing, and the right to peace and harmony

On the Twelfth day of Christmas the Government gave to me,
a ticket to Dignitas.

What’s the difference between a wheelchair and a stick..?

Last Thursday 9th of December the crucial vote on Tuition Fees was held, as we now know, the Lib Dem MPs allowed the vote to pass, despite their personal pledges to the contrary ( read @Gaijinsan21 s far superior explanation about why I am calling them “personal”.. )

This post is not about that however but a story which needs telling, Jody McIntyre’s story.  On Friday last week I read Jody’s account of his day and in particular his brushes with the police.  I was horrified to hear how he was twice pulled from his wheelchair and forcibly moved.  In time however, I began to think that perhaps he had exaggerated or that by putting himself in the front line as he does, maybe he antagonized the situation? 

This footage was uploaded to Youtube today by Jody, taken by a by-stander.  It has been lightened and sharpened by @Harbonaut < #ff please!

In it you can clearly see, as Jody had described last week, a police officer striding over to him in order to remove him from the area.  I believe it is the same officer who is, himself, dragged away from the scene shortly afterwards by his colleagues. 

So far all I have seen reported on the news is violence by the students.  I understand that at this moment there is a young man, Alfie Meadows, who is in hospital, recovering from a truncheon-inflicted brain injury which required a 3 hour operation.  We have also heard much about Camilla being “poked with a stick” by a student, very frightening I am sure but perhaps a little perspective newsteams? 

So what’s the difference between a wheelchair and a stick?

*UPDATED 14th Dec* : BBC News report of this evening on the incident involving Jody…  Watch the end, the interviewer tries to twist the story to make Jody the villain.. Jody stands up for himself, Alfie Meadows and the other students admirably and gets the message about unfair tuition fees across really well, kudos mate.

Here is the footage:

It’s all David Jason’s fault…

Strange title I admit..  Had a “delightful” conversation on Twitter this morning with @Obotheclown who certainly lives up to his name : )  We were “discussing” tax-evasion and the “undeserving poor”..  That phrase, “the undeserving poor” rang a bell with me but I couldn’t place it at the time, I ll come back to it in a bit.

Wayne & Waynetta Slob

My argument was that tax-evasion costs our country £15 BILLION  per year, whilst “benefit thieves” cost  just over £1 BILLION per year (source) .  George Osborne has announced measures to clamp down on these “thieves” , including a £50 fine if they are found to be claiming illegally.  I very much doubt that will have much impact, although if caught three times they will  cut the “thieves” benefits for 3 years as well.  Fantastic! *applause*, that’ll teach the blighter’s.. erm, to burgle, mug, rob.. ? And what will become of their children?  Send them into foster care as their parents can’t afford to feed and clothe them?  Not especially well thought out Mr Osborne.. no change there then.

In order to wheedle out these “no-good, thieving, low-lives”, they are firstly putting incapacity claimants through new tests in a project being piloted in Burnley and Aberdeen, due to be rolled out to the rest of the UK next April.  The aim is to get people who can work off the benefits and onto another benefit.. Job Seekers Allowance, which pays less.  The Work Capability Test which they will face is costly and has a history of mis-diagnosing the ability to work,  70% of appeals against negative decisions are upheld.

Which brings me to the point of this post (yes, there is one) .. who are worse? The “undeserving poor” or the “tax-evaders”?   According to my chum Obo, the “undeserving poor” are.. but I wonder, how did this myth originate?  I have a theory and I lay the blame squarely at the door of one Mr David Jason.. tax evasion is “cool”, to be admired, clap that man on the back…  “Del Boy” is a national hero!

Whilst Vicky Pollard and Wayne and Waynetta Slob are despised, ridiculed and much maligned on our TV’s, David Jason’s Pop Larkin is a cheeky, charming tax dodger with four TV’s and a Roll’s Royce.  Little Britain even showed their wheelchair user Andy as a benefit thief!   The only “undeserving poor” person portrayed on television that I could think of to refute this myth is the fantastic Stanley Holloway… what do you think?

But, you look so well…

Yesterday was World Arthritis Day and @RosieCosy sent me this link to a really good demonstration on how it is to live with arthritis for a day

However, arthritis doesn’t happen overnight, you don’t just go to sleep and wake up in the “body suit”.  It  is a slow, debilitating illness which can take months or years to develop enough for a diagnosis to be made, as so many people find out.

Mine started in my right hand, around 6 years ago when I was living in Spain. I put it down firstly to the stress of moving, then to too much driving and cleaning, our house had 23 rooms!  My right hand aches, I can feel it right down to my bones, sometimes the ache travels up my arm. I have even felt the same dull ache in my eyes.  It has never deteriorated though, I have bad days with it when I can’t use it and have it wrapped up to try to ease the pain but in general, I cope well with it.

A year ago next week I first saw a Rheumatologist about it, having been referred by my GP.  She ordered full bone scans which did not show any arthritis in my hand but did pick it up in my right toe, which had been painful but I assumed it was just one of those things, as you do…  The toe took until February to stiffen, finally locking itself completely around June.

A year on, I am now walking with a stick, yes, I took “the Secret” out this week after so much Twitter support..  I was amazed at the difference it made, not just to my mobility but to the way I was treated by others. Suddenly, I was disabled in their eyes. I was offered help, doors opened for me, people started unnecessary conversations, maybe to prove they’re not disablist?  Who knows.. It was eye-opening though.

Once I have my operations, I probably wont need the Secret but I will still be suffering from an invisible condition. Just because you cannot see illness, does not mean it doesn’t exist..

Please raise awareness for invisible illness when you can.  If you have a story you would like me to add to this page, please give me a nudge : )

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