New Toys!!! woooo hoooo! :^D

Thanks to my lovely O.T. i've just had some new toys installed into my flat, but not toys that most 'normal' people would get insanely excited about (like me.....)- as they're mobility aids! 

my favourite of all is this one:

a bannister along my hallway so i can walk along the hall without both crutches and still not hit the floor! wow, rather novel concept! ;^D it still needs to be either varnished or painted as it's just unsealed wood but has already made a huge difference and it's not been in my flat for longer than a few days! i'm very tempted to paint it white and then stick smiley face stickers all over it, with a coat of clear varnish over that. i love stickers, the brighter the better! i've currently only got them plastered on my crutches and braces and none on my new toys.... methinks a sticker buying spree on ebay is gonna be required soon!! 

                                                                                       
also got a perching stool that has been used looooads today (it arrived this morning). i cant believe how much easier it is to make a cup of tea when you dont need to struggle to remain standing up. it's a genuis invention! 

and got these 2 for my bathroom (and the railing on the tiles):

the bath is an odd size (a 3/4 size bath and not a full size one) and so was between sizes for the bath boards so we opted for the sightly narrower one as the wider one would have stuck out and when sat on the whole thing would have tipped. it's fixed underneath so it's safe as i'm only little, would probably be a different story if i was larger. and my midget step! a huuge step for me to be able to sit on the board as my legs were miles too short! lol!

i was suppose to also get railings around the toilet but the fitter was reluctant to drill into the floor as we couldn't see where the soil pipe was running, but he wasn't very nice and tried to coerce me into accepting it as done with the rainings just sat there. had to explain several times that it would tip if i leant on just one side but he just couldnt figure that one out. i tried explaining it several times but it just wasnt going in so i made him sit on the toilet and stand up pressing weight through only the right side (my left hand and shoulder are pretty useless) and then the penny dropped and he understood. i'm glad he finally got it- i was about to bang my head on the wall in frustration. so it went back to the warehouse with a note written on the delivery note thingy. 

my bed raiser rail thingy also had to go back as the wrong one had been ordered. he wasnt too impressed by that either!

and got a rail so i can attach my therabands and do my leg physio. the fitter was adamant that he knew best and the rail could not be there. but i stuck to my guns and he relented. unfortunately he wouldnt install it in the way it would have been the most useful (vertical) as a little horizontal line had been put on the diagram he got. so i now have a place to attach the band to do my knee exercises but not my feet. warned him that if my physio's didnt think it was adequate that he'd be getting a call to fill the holes and re-install.

feel a bit sorry for the poor guy, he obviously thought i'd be a pushover as i'm physically disabled (and so probably thought mentally disabled too as a surprising amount of the population think they always come together....) and look really young. oh how wrong could he be!  lets just say he learned his lesson........

my day was going great until i got my presciption prepayment in through my letterbox. i always forget when it's due so it comes as a shock and not cheap at £104 but FAR preferable to buying every item at £7.20 so i forked out the cash out of my savings. better to pay £104 year rather than over £1500!

was feeling a tad low after paying that as funds are running rather low as it was without forking out more money but my cat, Tiger, amused me tons by getting exceedingly excited by the salmon that i'd taken out of the freezer while re-organising my freezers contents. i wasnt intending on eating it but she went totally nuts! climbing all over me and drooling! so i gave in and roasted it for dinner and gave her a little, and i've never seen food vanish that fast in all my life- i blinked and it had gone! i turned my back for a second and found her removing all the last traces of fish off my plate. methinks i'll be sterilising that plate..... lol! but tum protested less than i expected so flare up is already easing. woohoo! now just for the pain everywhere else to go away.....

fi xx

London transport passengers at their finest. only one word to say to them - karma........

What the heck is wrong with people these days???! they seem to have lost all the manners that their parents taught them......

had to go into central London for a CT scan of my hips on Friday afternoon at uclh hospital. journey there all ok. scan more than ok- was there early so was seen early and as the machine is the new sort the scan took 5 mins rather than 15. all good so far.

until the journey home.....

made my connection to from warren street to Leicester sq ok but from there it all went a bit wrong. i got on the train ok, positioned myself by the 'priority seating' and ask loudly and politely if anyone could please give up their seat for me (as i really cant stand on a moving vehicle without falling). & generally there's always one person somewhere in the carriage who leaps up and offers their seat to me (and usually not the ones in the priority seating). at the very least there's usually someone who helps me sit on the floor safely. but not on Friday. everyone in the entire carriage did the 'i can see or hear you' act and the train moved off and i fell, nice and hard. i fell heavily against the clear plastic barrier thingy next to the seats before i hit the floor and made a lot of noise so the guy sat in the seat next to it DEFINITELY heard it (and must have felt it too) but he still ignored me. i tried in vain to make eye contact, but they were doing their best to look everywhere but at me. so i stayed sat on the floor for the 11 or 12 stops till south ealing when lots of people got off and seats became available, so i got up with some effort and went to take the priority seat..... and was beaten to it. people were literally running and side-step leaping in front of me to beat me to it, one man was millimeters from knocking me down. the speed and agility they all showed left me with little doubt that they were far more able bodied than me.

 

repeated my polite request and got the same response. so i fell again again. both times i fell on my dodgy hip that was still darned sore after my orthopaedic assessment last week so i cant describe the pain, it was so far above my pain tolerance that i was close to tears (but will never cry in public after the last time i cried on public transport and was spat on). due to the damage to my hip and left leg, when i got to my station (approx 17 stops from Leicester Square) i had to crawl off the train throwing my crutches in front of me (again, NO-ONE checked i was ok) and had to sit on the platform for about an hour till i was able to walk (and then could only walk as i took loads of painkillers). then it took me almost another hour to get up the stairs, out of the station and walk the short walk to the bus (usually takes me only 5 mins).


so a 45 min journey took me almost 5 hours and i was in tears by the time i got home from the pain and frustration. and relief - I've never been so relieved to be home in all my life! I'm visibly disabled- got crutches, lots of braces etc so it was obvious i may have needed a seat even without asking, so i guess the lies the press are spreading about us disabled (that we're ALL benefit scrounging scum even if we're not on any, we're the cause of the credit crisis as we're all workshy, etc, etc.....) are being believed. fantastic. well done to the press and the government. we should give them a round of applause.......

  

AAGGGGGGHHHHHHHRRRRRRR! so hurt like heck today (feel like I've been in a boxing match and

  lost) IBS and gastroparesis are all flared up now, keep vomiting and feel like the living dead. fantastic. i'm soooo glad for my pals at church today who made me feel so much better, was tempted not to go as i really dont feel too well but as usual it was worth it! and i've even got a pal from church wanting to come with me to my next appointment in central london to act as my bodyguard! yay! she's a formidable woman when she wants to be so i'll feel a lot safer having her there.

Lets hope my week improves before i loose the small shreds of sanity i have left! got some stuff from the O.T. arriving tomorrow so *should* be a good day. But then, i'm also gonna be starting on a course of nasty antibobos..... ah well!

two small pictures i couldnt resist taking as i looked so ridiculous. NHS chic at it's finest, although the quality of the fabric was better at this hospital compared to my local one. and it had both ties so my bum wasnt on view. always a bonus! and why are they always 'one size fits all'?? it went round me loads of times and if it was any longer i'd have fallen over the end! lol!

fi xx

Oh insomnia, how i love thee.....

I’m frustratingly wide awake at silly o’clock in the morning (3.55am). I’m far too awake, I’m never this awake during the day…. Maybe I’m over-tired?

My pain level certainly isn’t helping me get to sleep- I had my orthopaedic appointment on Friday lunchtime at UCLH in central london & the consultant was brutal during the examination, particularly when he did the hip impingement tests. So I now feel like I’ve been run over by a speeding double decker bus, I hurt soooooo much, far more than I expected to. The journey to this hospital used to take me 45 mins but took me 3 hours now that i'm so broken, so I’m soooooo not looking forwards to travelling for my CT scan on Friday at UCLH. It’s at 4pm so it'll be rush hour on my journey home- I’m fragile and get injured & dislocated from only a small nudge, so crowds of people are my idea of hell. Methinks I’ll be camping out in the UCLH café for a few hours with my book….. At least they have decent coffee (Costa coffee outlet) so waiting for the tube chaos to ease won’t exactly be a hardship! Lol! ;^D

And I’m so unbelievably excited that I’m finally getting my assessment with the lightweight wheelchair man at the end of March! Wooo hooo! So I’ll soon have my freedom back! Yippeeeeee!

 

Apparently it’s time to try and sleep again…..The cat is sat halfway down the hall and whinging at me. It’s obvious she wants her human hot water bottle in the bed with her & I expect she’s also doing her impatient foot stompy thing too- she’s so cute when she’s mad at me! ;^D it’s amazing that a creature who can’t speak English can still clearly get her point across! Lol!

Night! (or more accurately- morning!)

a little (well ok, I lie... a LONG) intro to me.....

Hiya,

Apologies in advance for any rubbish spelling and grammar and general waffly-ness, having a bad day today and feel like I’ve been hit by a speeding double decker bus thanks to my appointment with the hip orthopaedic specialists yesterday. More about that at a later date. :^)                                                                                                                                                        

My name is Fiona-Jane Kelly and I have Ehlers-Danlos Syndrome, a connective tissue disorder and a load of associated health issues. I was only diagnosed on 13^th Feb 2008 when I was 27 years old- up until that point I was a hypochondriac making everything up, apparently. I was told it so often that by my late childhood I totally believed that all my pains etc were in my head and that I was crazy. So when any new symptoms cropped up I just ignored them…. Including the intermittent tachycardia that started in early secondary school and the bilateral sciatica that started when I was 14. I feel sorry for every dentist that has treated me since I was 12 (and started having injections rather than the gas) - due to my EDS the injection has never worked and I feel the drill as if no anaesthetic is in my system. I assumed that this was normal, and that it was like this for everyone (after all, I’d been told that my pain and dislocations were ‘normal and everyone has them to a certain degree’). My face would go numb but the tooth wouldn’t, and I think they could see the pain in my eyes as I never, ever saw the same dentist twice. Every single dentist left the medical practice after treating me. I called it the ‘Kelly curse’. Unsurprisingly I now can’t get a dentist for love or money. whenever I need treatment I have to go to University College Hospital for it and have a general anaesthetic, even though the pain of drilling is not actually that bad, the injection hurts more, so I’m quite happy to have dental treatment without the anaesthetic (as I’ve had enough fillings and extractions without it working and coped completely fine). But dentists are less happy. LOL! How on earth did the poor things cope before anaesthetic was discovered??!  I’m so lucky that my teeth are not too bad, even though I have EDS.

 Being misdiagnosed for so long does have some advantages though, it’s made me ultra self sufficient and independent, I’ve developed a pain threshold that’s really high, I’m usually able to fix all my dislocations without needing any help, and I can read and understand big medical words as I’ve been reading medical textbooks since early childhood (to learn how my joints are supposed to be aligned so I could fix them).  See, every bad thing in life has a good side ;^)

But that all changed on the 13^th Feb 2008 when I was finally diagnosed and told by a proper qualified medical consultant that was not crazy, ALL my symptoms are real and although the condition is incurable and relatively untreatable, many of the symptoms could be treated with a fair degree of success.  They’d never go away but it was possible to make them easier to live with. HOORAY!!!!  :^D  And was told my gastro symptoms are severe (I thought I had a normal gut) and was sent to a neurogastroenterologist at St Barts hospital who has literally changed my life. I never realised how painful and dysfunctional my whole gut was until they started me on treatment and made it work better!  Several other consultants in various areas of speciality were gradually added and they all made a huge improvement to my quality of life. I’ve gone from hating tablets and refusing to even take vitamins and paracetamol to taking so many pills I rattle. Each one added with the proviso that if they didn’t work and improve things I could stop them….. once I’d felt the massive improvement each made I made the wise decision to keep taking them.  ;^) 

Being finally diagnosed was absolutely fantastic but came with its own problems. I now couldn’t carry on living my life ignoring it all as I now knew the damage I could possibly cause myself. I was a circus performer and had worked for years and years and years to make myself strong enough (and skilled enough) to do handbalance acts, contortion, partner balance etc. being in the circus was my secret childhood dream (the one you don’t tell anyone about as you think it’s just so farfetched it won’t happen) that I finally made possible in 2005. Even when I was newly diagnosed, the acts were mostly still doable as you can tailor them to cope with the fact I lost the ability to take weight through my left hand due to a bad injury etc…. But the manual labour and non-stop life of the circus was just not something I could physically do anymore. Now I know that the tiredness is proper chronic fatigue and not ‘laziness that needs to be worked through’.  I got so exhausted by the end of 2007 that my gut slowed down to an almost stop and I couldn’t eat for nearly 2 months and ended up pretty sick because of it. I’d kill myself if I continued living that life. Problem was, it was the ONLY thing I wanted to do with my life, I thought that this was what I wanted to do with the rest of my life, that I’d finally found my niche in this world. Circus was my entire life. When I realised I could no longer live that life I was devastated, completely devastated. Felt like a great ragged hole had been ripped into my soul and I had a dirty great wound that threatened to engulf my entire existence. I know it sounds like I’m over-dramatising it, but that’s just what it felt like. And it HURT. Real bad.  My entire life was gone, that was just what it felt like and I was a total loss what to do. Anything that reminded me of the circus triggered this agony in my heart- the smell of popcorn, similar music, the sight of canvas, circus or acrobatic acts on TV…..  

It’s taken me a very long time to grieve for my old life and gradually begin to carve myself a new one.  I can now enjoy circus again, but this time only from the audience. But that’s ok. The wound in my soul is still there, and I think it always will be, but it’s now covered over with a thick skin so I don’t feel the pain so bad. Some days there’s no pain from it all, but I can still feel it there. I’m now realising in some ways it was a blessing to have to change my life- I now have the chance to do all the other things I’d not been able to properly do since childhood. I now can give my geriatric kitty cat, tiger, all the fuss she wants, I’ve re-discovered my love of knitting,  taught myself how to crochet and make little woollen animals that my nephew just adores, I can bake, sew, read, get more involved with the church and I’m gonna be starting to learn to play the clarinet in the summer. I finally feel like I have a life again, and I’m actually far more content in this life than I was in the circus, I never thought I would be so it’s taken me completely by surprise. I always knew something was wrong and it was niggling in the back of my mind. But now that niggly feeling has vanished, hopefully for good. I never realised how much it was bothering me until it went and it felt like a mighty weight had been lifted from my shoulders and I could finally breathe.

I’m about 3 years post diagnosis now and I’m finally starting to feel more like my old, cheeky self. Moving out into my own ground floor flat helped loads, I kinda liked living with my parents as I had support there all the time and if I fell I knew there’d be someone to help me…. but stuff was getting bad and I just had to get out as it wasn’t safe for me to be in that house anymore. I was immensely lucky that I got a housing association flat as soon as I did- I’d been the successful bidder, signed all the contracts and paperwork and moved in 3 years earlier that I was predicted. I still can’t quite believe I was the successful bidder on this flat as it’s absolutely perfect, has everything I wanted even the teeny garden so I can grow stuff once I’m well enough, a garden not too big that I can’t manage it too. Perfect size for little me!  And the best thing…. no stairs! YAY- no more falling down them on a nightly basis!   After a brief argument with the housing association (about people parking in the disabled spaces when they weren’t supposed to) and I now have a disabled space right outside my front door. Result!

I’m also getting the home help I’ve needed for a while now- get seen by 2 wonderful community physiotherapists who make each session fun (rather than just painful and boring), a lovely Occupational Therapist who’s been super helpful and getting me lots of railings and aids for my flat and even helps me tailor my cooking skills to cope with my disability so I can gradually learn how to cook again. And she’s contacted Social Services for me so I can start the process to get a carer. Hooray! And being assessed for a lightweight wheelchair so I can still get around on days when I can’t stand or walk so I don’t have to crawl! That’s a rather novel concept. LOL! ;^D                                                                     

My year’s resolution was to let people help me (as I naturally don’t like it and want to ferociously fight against any help) and I have to admit that life is much more enjoyable already so it should be a great year! :^D

Fi xx