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 Five #Hardware

Ouch.. no flipping wonder my foot still hurts!  Had X-Rays and have been told off a bit today, I’m not allowed to walk without the crutches for another 6 weeks : *(   and I still have to wear the stupid boot.  On the bright side though, I can bathe again tomorrow *sniffs armpits*, think I got away with it though : )

 

 

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*

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