blindbendy. wake me up if im sleeping

lots of changes

2008-12-17T03:49:24+01:00

again its been a long time since my last post. i guess mainly because i was igrnoing what was happening and not wanting to think about things.

things have deteriated with my health alot.

my sight continues to deteriate.i have been finally registered sight impaired. the photophobia is horrible now. the filter specs and sunglases dont work and even when i close my eyes the light still burns so much through them into my eyes.

my night blindness is continuing to affect lighter and lighter dim light situations. and on top of this im seeing things inth dark that arnt there like the cieling crashing down on me or lights shooting towards me. im getting quite scared of the dark now.

sight level wise im about line 2 on the chart with my good eye. the low vision googles i got dont help me now and i have an appoitmnet to see if theres anything else they can give me.

hypermobility has gone down the pooper to. my SI joint has finally triggered and im in constant pain with that. i walk with a walking stick now but for other reasons that il explain further on im needing more support.

my right shoulder has started to get very clicky and clunky so im quite concerned that is going to sart to dislocate. my wrists and finger joints are getting stiffer and more painful so loosing alot of fine motor skils with them.

last time i blogged i metnioned that i was to see a specialist. well i did and she was brilliant. she is such an amzing caring docotr she even foned me at home at night after seeing her kids tobed to discuss some test resulsts with me.

she has put the pieces together of all the puzzles iv been given the docotrs for the past year, pieces that gps ignored, put down to 'anxiety' or simply told me wasnt possible to have them at my age. along with the sight loss which still hasnt been explaeind she has figured it all to be connected. and it all comes doen to some form of degenrative condition such as MS or motor neruone. my new gp agrees with this too and im waiting for an mri to give some form of confimation.

i ant really walk far now. i have walkgint sticks but can only manage 10 mins of standing max or 20mins walking. after that i need to sit and rest for ages. so ive been loaning wheelchairs on days out. as well as walking frames. im 28 and lining up wtih the old ladies at the post office comparing zimmer frames. its the most degrading thing.

im prety incontinant too now. yep im not afreaid to say it aout loud. im 28 and i have to wear nappies because i pee myself throughout the day. i have a pampers wet sheet on my bed and getting intimate with my boyfriend usually ends up with me wetting myeself in the middle of it.

i was pretty positve about thigns before but now im gettig peeved off. peeved off that i dont knwo what is happening to me. if it was wose case scenario and i was going to end up a lump in a chair with no contorl over anything then so be it. thats what i chose this life for for some reason i havnet discovered yet but i just want to know.

i now have to eat with my head really low down because i cant lift the sppon up to my mouth repeatdly. i have to dilute my cup of tea with cold water like a child because i cant hold the cup long enough to drink it sipping it like i use to.

i gave up photography and digtial art because i couldnt see to do them and it crushed me and so turned to painting and ceramics but last week i left the studio crying because i couldnt hold the hrush to glaze my pot and i broke my pot becuase i couldnt hold my hand up to use the whirler stand and i broke a big chunk out of it lifting it down to the table so i could like my and on the table and slp the paint on like monkey.

im on mega high dose of sleepers now because the spasms and cramps are son intense at night that the jerks my brain is making my body do to get out of them is throwing me out fo the bed.

so i cant walk much, cant eat properly, cant drink properly, can go to the toilet propelry (for added insult to the incontinace wet style , my bowel is now pretty much non existant in terms of fucntion so im on laxatives every day like smarties just to get to the loo once a week), the pain is constnat, cant sleep unless im comotosed, cant see a great deal and im getting worried about my hearing but im not mentioning that to anyone i kno. i know my famile and friends dotn read this so i can be open here.

i just wish i knew why. just one answer. amd i going to get worse or am i going to get back to normal again/? yes or no. whats happening to me, why does my brain hate me so much. why is my body so intent on fighting me,

people are being so kind and genrous to me. i use an email version of ebay for blind people. and i mentioned on there that i had recieved no funding to help me buy some of the essential things to help me adapt to my sight loss, software for my computor, a braille machine, etc etc the amount of moeny people have offered me is so huge. another woman who i dont even know who knows of my situation through my mum has offerd to give me her anual xmas charity donation to help me buy the software. iv been in tears so muc this week at the kindess of total strangers. i cant acept any of the moeny becuase im just so taken about the people who dont know me can be so kind. so i have asked them if they want to help me can they donate to action for blind, an organisatin that has supported me so mcuh these past few months with advice, helping me find work, kicking social services into gear etc.

im still appearing the usual carrie to everyone else. i think because i dont know how im supposed to be. i know people go through a greiving stage, an angry stage, a complete breakdown stage when tehy find their bodys are slowly dying. i want to be able to do that now, i feel at that stage but because no one has said whats wrong, i cant do that yet. my family are very concerned now. they notice the deterations more than i do. we have talked about applying for dogs for the disabled once we gt an anser from the mri. my mum is no longer recoiling at the thought of using a wheelchair and is encouraging me to use the walkers and chairs. he concern is how can i move safely in a wheelchair with a white cane. anser. i cant . unless i use an electric chair. but they arent always on offer to loan for the day at shopping centres or museums.
i cant use a manual when im with my boyfriend because hes blind and despite us trying it just doenst work.

im sorry this has just been one big feel sory for myself blog. its not like me as you know to be so down beat about things. i promise to post again when im a bit cheery.

i aplogise also for the hidisouness tat is now my typing. i posted this and read it back and im so ashamed at the awufle mistakes. the communicaiton beteween my brain and my fingers is getting alot worse too now and bwhile befor i could joike that my fingers were too fast for me, now thers big parst of my writing that are unreadable. im sorry if things dont make sense and i promse i do still have the same iq or 120 that i had las year lol

to end on a positve i have my first proper braille lesson tomro after going for my regual prod and poke at the doctors.

Comments

panic over everyone!

2008-10-03T00:43:10+02:00

call back the search party iv been found in a dodgy pub with my gob around a bottle of cheap alcopop.

Iv been away as its been a bit hectic.

My sight has contined to deteriate and i had a nightmare finding a free screen reader so i could continue to use my computor.

I finally found one but it meant wiping my vista laptop and sticking xp on it. something the manufatures make as hard as possible. took me a week but got there in the end so im up and running and would like to introduce harry my talking computor.

In the land of carries eye its not going well. I had an appointment at sunderland eye infirmary where i have now been refered to (think the other local docs are fed up of me now).
The doc was measuring my eye movemnet ready for me seeing another specialist next week. She said my eyes are dancing around alot now and arent able to fix on a focus spot because my sight is pretty naff now.

She asked me how it was affecting my life and because noones asked me that i burst out crying. i finally was able to talk about how devastating im finding it. she was very understanding and loverly (and very attractive too!)

after i see the specialist next week im probably going to be refered to the low vision clinic where tehy have specialist blindy things like mega magnifiers and mini telescopes and groovy glasses with telescopes on them to try to help me make the most of my sight as it is now.

they still dont know whats causing the sight to go but are confident they will find an answer soon.

My art work has taking the biggest makeover ever. Its very difficult doing my digital art now but iv found a way to still use photoshop but have had to change my style completely.

Im doing pottery now. (yes you can shoot me. i said i would never go for the easy option but i have and i love it).
Im doing my best demi moore impression at the potters wheel tho i still havnet found a patrick swazie to feeel me up at the same time. send cvs to lonlyblindy@tryingnottolookdesperateandpathetic.com

iv also been talking to a blind painter who creates his painting by making up the image on canvas with plastacine then painting over the tactile image. hes going to send me some of the plastacine so i can have a go. His work has really imspired me and hes allowed me to add some of his work to my website as the guest artist. I will hopefully be adding it over the weekend.

hmmm what else has been going on...???

Oh yeah im having varioud meetings with support business to help me get my own business up and running. I am goin it alone as a drama workshop facilitator. Im going to be targeting community and support groups (ie womens groups, young people, mental health etc), prisons and businesses who want to use drama as part of awareness training.

ITs basically what my degree is in and i did the drama workshops for extra cash when i was in uni so i know i can do it i just need to do it properly this time as a self employed thespian.

As my sight is really pap now im hoping i can get fundign to emply a personal assistnat to act as my eyes during the workshops. to tell me if people arnet getting on with the work, to describe movements, facial expressions etc and to read and of the written work that will be done as part of the workshops. If i can get this then i wont have any trouble doing the workshops.

bendy wise im doing good. iv not had any injuries or got myself tied up. im clunking alot more but thats about it. my energy seems to be working much better. im very busy now, out most days all day. and i manage to get through the day. i do flake out by the weekend tho so i have to be careful and start pacing myself better during the week.

think thats about it for now.

hope everyone is ok.

Comments

unfortunate and anoying spazzy loo incident

2008-08-23T17:26:22+02:00

iv just got home from a nice walk with my mum to the local pub where we had a gorgous meal and a few too many pimms.
on getting home i straight away took off my jeans and knickers and threw them in the washing machine then hobbled upstairs at full hobbling speed, and stuck my butt into bath and dowsed it in high power shower spray.

why?

not becuase id had an unfortunate accident nor becuase i tripped over my cane and went butt over boob into a puddle but because of a very annoying but frequent disabled loo incident.

now i know i talk about disabled loos alot, im not obsessed (well maybe a little) but because these accessible independance driven designed peeing stations often cause me more distress than luxary.

today was no different.

at the pub theres a beautiful fully equiped disabled loo that even has the alarm chord stretching all the way to the floor!

i wandered over to the loo with samson my trusted white cane when an old lady beat me too it hobbling in with her zimmer frame. so i sat back down and waited her to finish.

when she came out her daughter/friend/carer straightened her skirt that was tucked up into her stockkings and they went and sat down so i hurried to the loo before someone else jumped in.

i propped samson up in the corner and sat on the loo...woah!!!!!!

i jumped back up nearly dislocating my hypermobile hip in the process. the loverly old dear had managed to pee over the entire seat.

how she managed this i dont know. i would suggest she was practicing for the olympic hula hoop finals mid flow or had some 360degrees spraying incident.

the entire seat was soaked and now so was my bum. i grabbed aload of tissue and manically dried my butt and the seat but the damage was done.

i quickly peed and pulled my pants and jeans back up but my butt was stil damp so now had slightly damp skinny fit jeans reminding me of the grossness of bathing in someone elses urinary flow.

i washed my hands a billions times and headed back to my mum where i had a seriously loud moan in the hope that the woman and her daughter/friend/carer could hear.

anyway i feel slightly more comfortable with my washed backside but still have visions of the old womans pee molecules seeping through my layers of flesh.

from now on il be carrying a bundle of tenna pads around with me to stick all round the loo seat. its either that or ask the nearest poor normie to come in and see if theres any mess on the loo.

moral of the story...

blind people use disabled loos for hygiene reasons amongst other things. we cant see if youve peed or worse on the seat so be curteous and clean up your mess.

Comments

past few weeks catchup

2008-08-17T16:27:43+02:00

iv not posted for a while so thought id catch you up on whats been going on.

had eye hospital appointment. tests i had a while ago to see why my sight had gone down were fine so it was just a follow up to say 'no need to come back' or so i thought. even tho i thought my sight had stabelised since the tests it hasnt its continueing to deteriate and the docs have no idea why cos my eye and optic nerve are fine. so they are baffled and getting quite concenred. without knowing whts goin gon they cant stop it.

so im been refered to a specialist further up north to look at neurological causes. have to have more tests to see what my field of vision is doing. i think thats gone down too but waitin for test to say if it has before stressing.

so that was all bit of a shock. not prepared myself for any of that when i went to the hospital. just sitting and waiting now and hope this specialst can shed some light

also my aunty is sick with cancer in same year my mum , her sister, had exact same.

and to top it off been hounded by council tax people cos ex housemates havent paid their share of the bill. again very stressful.

keeping myself busy. got a big art project on the go creating a piece about hypermobiltiy syndrome. got lots of sufferes helping me by sending me pics of their aids, splints, injurys, etc which im going to use to create a female body. basicaly a collage of pics that show the true nature of the conditino and the severity of it that will be formed into a woman.
people have talked about developing it into posters for rheumatolagy depatments, leaflets, awareness etc for the hypermobility association so its took a big step up from what it was originally.
trying to get all the other projects out of the way as quick as possible so i can focus on this as its gonna take months to shift through all the pics and prepare them for the actual peice.

bendy wise pretty much the same as i was last time we spoke. shoulder is still not happy after it fell out when i was swmming (doctor recommended swimming i may add). its pulling quite hard now and the pain is constant. left leg is still pretty much spazzified. using a walking stick now when i need ot to help me when the chronic fatigue kicks in but cos its really hard using a walking stick and a white cane at the same time its only for emergancies. people keep suggestin a white walking stick cos they symbolise blindness but a walking stick isnt going to proide me with the informatio about my surroundings that a white cane does. dying to hear form other blindies who use walking sticks and a cane for tips.

Comments

please help me

2008-08-05T01:17:19+02:00

as most of you know ie been diagnosed with hypermobility syndrome. the hypermobility syndrome association (hmsa)are an organisation that help support people with this condition by providing information and emotinoal support. they also work so hard to tackle the ignorance to the condition in the medical profession that leaves many people like myself suffering for years being told its in their head or they are attention seeking.
to finally recieve a diagnosis is such a relief to know its real and you werent imagnig the symptoms but when reality hits its another emotinal snowball filled with the what ifs (what if id not exercised as much and pushed my body, what if id been stronger with the doctors, what if i hadnt done all those things that have made my mody much worse than it should be.), the reality that this is real and for you for life etc.

hypermbility syndrome is a gentic condition. its something your born with but often doesnt get diagnosed till adult hood due to gps and consultants not knowing about the condtion. its cuased by a dfect in collagen. collagen gives the body its toughness while allowing the body to move. in hypermobiltiy syndrome the toughness isnt there so the joints, muscles, tendons, ligaments and even the skin and organ tissue in some people are affected and so move more than they should. you can have hypermobility in any joint. i have it in all my joints including all my my spinal joints. this means each of the affected joints is prone to injury and later on osteoarthritus.
symptoms include

Pain

Arthralgia (neuralgic pain in a joint or joints), particularly in knees, hips, elbows and fingers
Pain that start or increases after strenuous activity or exercise
Pain that improves as the day progress and after rest
Low back pain due to hypermobility of the lumbar spine
Neck and shoulder pain due to hypermobility of the cervical spine
Foot ache and fatigue when standing for longer periods of time

Other Symptoms

Chronic Fatigue
Bruise easily and bruising is more pronounced with even minor incidents
Tense, stiff joints that improves as the day progress
Frequent injuries, particularly sprains and dislocated joints
Poor proprioception due to overstretching as a lack of awareness due to joint laxity
Complications with surgical wounds - stitches may tear out or healing may be incomplete
Slow wound healing followed
Easy, prominent scarring even from small cuts
Stretch marks due to skin fragility
Greater risk and incidence of dislocations and sprains
Neurally mediated hypotention
Postural orthostatic tachycardia

Hypermobility can also lead to:

Hernias, particularly hiatus hernia
Varicose veins
Gastroesophageal Reflux Disease (GERD)
Irritable Bowel Syndrome (IBS)
Functional gastritis
Scoliosis (curvature of the spine)
Tendonitis and bursitis
Early onset osteoarthritis
Rectal or uterine prolapse
Mitral valve prolapse
Premature artherosclerosis
Raynaud's phenomenon
Increased risk to develop asthma

the hmsa are run by people with the condition with the help from dr graham and dr bird. the 2 most specialist in the condition (and 2 of only a handful who really know enough about the condition to help patients)

the hmsa is run purely on donations and as such cant do half the thigs they wish they could. im a member of the hmsa now and like many others we constantly look for new ways to raise money.

a new scheme we are doig is to raise moeny collecting the plastic tops from the plastic milk cartons. when given to an organsiation that recyles them we in turn recieve money for each top donated.

so please from now on instead of throwing your milk bottle tops away, give thm a quick rinse and pop them in a plastic bag. when you have collected a few either post them to me or if you live near e i will come to collect them. if you can help me with this i will pm you my address.it wont cost much to post a jiffy bag full of tops.

please forward this to your work collegus, freinds, family and help me raise much needed money to support an organisation that have helped me fight hard enough for a diagosis and continue to help me learn more and more about how to protect my body, cope with the pain and exhaustion and how to live with this potentially crippling condition.

thank you so much.

carrie x

Comments

doctors advice. yousure this will cure me?

2008-08-02T04:20:45+02:00

adult content warning--- this blog contains moaning, feeling sorry for onself and the use of words reclaimed by the disabled community to express pride of disabiltiy not insult.

if you are easily offended by the words spazzzy, blindy and doctor, please skip to the bottom of the page

bling bling bling....adult content about to start.

so iv been followirn my conulstants advice (i say 'my' becuase i saw him once, diagnosed me hypermobility sydrome and sent me home never to be seen again) he siad that this condition is good if your a ballerina (im not one and he clearly doenst know anything about it cos he said it just means your more 'wobbly')

anyay he said if i go swimming that will toughing up my muslces, theyl support my joints better and il be all better

so iv forked out £40 a month to join private gym cos local pool is not blindy friendly. im not allouwed to use the gym equipement or do any strenous classes so im down to swimming, pilates and abusing the spa pool.

iv been swimmng twice and my god did i get a shock.

6 months ago i went swimming and did 20 lenghts of the local pool (my sight was better then).

this week i went swimming, got in the water and realised my left knee no longer moves in that way to do anything other than have me floating round in cirlce. my right knee is a bit better but only way i could stop myself drowning in th 4ft deep pool was to use one of those big worm float things. wrapped it around me and floated up and down using my right foot as a propela and flapping me spazzy hands to make me feel i was doing somthing.

i cant explain how devastated i was.at school i was called the fish cos i was first person to ever swim te entire lenght underwater and i won every swimming race i was in. i lived in the water and nothing makes me fel more at home tha being in the pool. i knew my body was getting in a state but to not even be able to tread water in just 6months.

im not happy at all. i didnt realise my body was that buggered up. i knew by my walking that my left knee wasnt happy but somethig simple like moving in water showed how bad each of my joints are.

in end i floated and spazzypaddled one ful lentght which wasnt far, and kinda drifted up and down few more times with the current my friend was making, clingin for dear life to fred the worm.

i was in the pool about half hour and was so exhausted when i got out. not unfit exhausted but chronic fatige exhuasted. i went home and slept form 2pm to 9pm woke up took my meds and went back to bed for the night.

went again today hoping it was just shock of squeezing into a two peice. but today was even worse. it was so much effort just to hold my body in the water.. again fred the worm clug on for dear life and i just bobbed up and down with my leg twitching. my arms were a bit better this time thos so i maaged another leght. but being extremely stubbown i dropped the float ad pelted into a hard core gentle granny breast stoke.with my left leg floating behid me. was just my arms that were keepig me goig and the fact i could touch the botom of the pool with my 'good' leg to push me along. how is this helping me? its making me want to chop off my bloddy limbs nad have done with it. i feel worse today in the water than the other day. im aching so much all over, more than usual and my joints are killing me. and to top it all off the the doctor didt mention anything about my shoulder dislocating while i was in the pool.

got out after 20mins. sat in spa pool with everything floating around for a good massage.

was suposed to go to taichi class few hours later but just went home cos so exhausted again. luckly after a lie down i was alive eough to play on dads new wiifit (on the gentle games-yes mam)

this week or rather this year has more tha shocked me. all my life ive had problems yes but the speed at which my body is fallin apart this last 6months...i just cant believe its real. im stil thinking maybe docs were right all time, maybe its i my head and il wake up one day and il be back i my 27 yr old body. i cant believe this is what it is now.

my shoulder 'fell' out of socket in the pool when i was bobbing up and down in the water, not using any joints just having a gossip in the middle of the pool trying to work out with my other fellow blindy if the writing on the bottom of pool said 'springs' or 'kellogs' (as it was springs gym we reasoed it must have been kellogs.)

i warned people i would ocassionaly have a feel sorry for myself moan and im afraid im having it.

my body is officially on the sucky list today. trying to work out how i can go see my mate tomoro and leave my body at home. iv had eough of it this week, need a break its doing myhead in.

im getting nervous about going again. what will happen next time. i cant jsut jack it in cos next time i see a doc about the condition hes gonna ask what im dong to help myself. swimming is the safest recommended excise for hypermobility.

im going to see if it helps if i put my joint splints on. iv got cheapy ones from pound shop that will prob just dry out. will try the knee one and the wrist ones and mybe my anckle ones.

if anyones willing to come with me we can tie a rope around me and you can just pull me up and down the pool on a spinal bouard with full coller and body straps. that should be safe enough.

bing...bing...bing....

rant over it is safe to turn off parental control and re-enter the blog.

so to sum up...

went swimming. it hurt a little bit but its ok cos its consultant recomeneded.

goodnight.

Comments

goodbye phylis

2008-08-01T05:52:31+02:00

my dearest friend phylis has finally retired due to ill health.

phylis is my white cane. shes developed arthritus in her joints and no longer folds up cos shes so stiff. this also makes it hader to feel the feedback from the pavement so she filled in her incapacity form and is now taking a comfy seat in the corner of my room.

phylis has been tough to work with. shes got that typical teenage angst. likes to cause trouble by tripping people up andcausing commotions in shops by knocking things over. we've had our tese moments when shes tripped me up and sent me flyin and a few scary moments when shes got stuck in drains.

she will be truely missed not only by me but my mam has taking quite a shining to her and often has a little chat to her when she walks past phylis in the porch. one day me and phylis went shopping and it was pouring down and we got soaked. we got home and mam came rushig over with a big towel. grabbed phylis and rushed her into the kitchen to dry her off while im stood drenched and shivering in the porch wondering where my towel and hug are!

phylisis best friend is my mates guide dog. when we meet for coffee sandie the dog and phylis disapear under the table and gossip. they like to play 'who can cause the most damage' in shops. sandie usually wins by knocking shelves over when she gets too excited.

i contacted teh cane orphange and my new adoptee arrived yesterday. he's a boy and called samson. hes not as strong as phylis so il have to be more careful when i use him to lea on (not that your supposed to do that with white canes). hes a long cane which is the type most people associate with blind people. he has a big black grip handle which is much easier to hold with my old lady hands. he also folds up beuatifully so i wont have to go through the enjoyable game of trying to balance him agaisnt a wall or table.

he seems much more profeesional than phylis. hes longer than her so i didnt trip over him or kick him once yesterday. but time will tell what his persoanlity truely is.

so phylis. you will be missed and you will always be my favourite.

phylis stands tall in the pic at the top of my blog.

Comments

disabled loo inspection

2008-07-31T03:26:20+02:00

i have develped quite an intrest in in disabled loos.

not cos i enjoy spending half an hour in their while i search for the loo roll but because of how inaccessible they actaully are.

i have a radar key so i can use any of the loos that have the radar lock without having to put my hand up and ask permission fomr the coffee shop manager to go to the toilet.

heres a list of the tings that really get me ticked off in the wonderful world of accessible peeing.

1)biggest one--why do they feel the need to tie the emrgancy chord up to the cieling.?
if my bendy hip has falling down the loo and im laid on my back on the floor... i know im more stretchy than most but come on...how on earth is it an emeracgy 'im laid on the floor with me pants round me anckles and could do with some help please' alarm wen its 4inches from the cieling?
they more bothered about people thinking its a light switch and pulling it.!

2)baby changing grrrr. another one that really anoys me. yes have baby changing facilities in the loo for disabled parents but dont stick the main baby table in the disabled loo. im not being akward but disabled loos arent just for wheel chair users. alot of people with incontincen problems, people with illieostomy or colostomy bags, people with conditions that make them throw up , they all need quick access to a loo hence the disbaled loo that rarerly has a queue so they can get straight in and not end up with some bodyily feature all over themselves. theres nothign mroe demoralising than wetting yourself in public.
so while mrs normie smith is cooeing at her baby on the changing mat, using the loo while shes in there and then having her mate whe went in wtih them users the loo us lot are siting crossed legged outside for 20mins. some people can nip to the normal loo if they really have to in these circumstance but not everyone can.
if your a wheelie then you have no choice but weight. if your a blindy with a guide dog prety much same thing cos its very difficult getting a dog in a normal loo cubicle. for me i could use the normal loo but i woudldnt be able to get back up off the loo. i need grab rails. so leave the disabled loos for the disabled people

3)loos as storage. the amont of disabled loos iv found at the back of the pub after manovering around the beer kegs is amazing. you get in there and once i even had to shift some boxes to get to the loo!
wonder how the manager would feel if we filled his bathrrom at home with wheelchairs that takes him 20mins to untangle and shift so he can get to his loo.

4)hide the loo roll game. yep you know who you are. you nip in to use the disabled loo and stick the toilet roll on top of the tank bhind your head. while this is a safe place as noones gonna trip over it and it stays dry. if your blind and you reach out to the side and feel about, it takes a very long time to get to feeling behind your head. also if you have back problems of mobility problmes, joint problems in the upper body etc your prob not able to move in a way where you could reach the loo roll.
the obvsious thing is to say 'well look for the loo roll before you sit down' something i now do as often as i remember but sometimes its not till your sat on the thing do you realise you dont know where the paper is.

5)normies. yep again you know who you are. iv no issues with normies using the disabled loos but please make sure they are clean when you leave. dont mess them up, dont pee on the seat etc. this is especially impartant for visually impaired people. we cant see if theres pee or worse on the seat or on the floor. it too late once you sat down of your dropped your coat on the puddle on the floor. visually impaired peoplae have to be more on top of hygeine becuase we cant see if theres stuff on our clotes or much on our hands etc if we cant feel it or smell it then it can get other places and this is obviously not very nice. so if you play jump the queue and use the spazzy loo, make sure you clean up any mess please thanks.

i better stop now before i start to look obsesive

Comments

im not 'brave' i just dont care.

2008-07-31T02:56:45+02:00

i thought my first ever attempt at blogging would be best off done as a genral explanation of myself to prepare the world for any future venting, use of disabled slang and typos.

im carrie im 27 im stuck in the north east enlgand having had to move back home for support.

im an artist by trade. i create digital art, photomanipulation, mixed media and the occaisonal attempt at doodling. you can see some of my work at www.freewebs.com/carriebeckwith

whe god made me it was at the end of the current design season so i was shot together with all the left over parts and the damaged returns.

i was born with congential ideopathic nystagmus and photophobia. basically this means i was born with it (congential) the doctors havnet figured out why (ideopathic) basically 'wobbly eyes' (nystagmus). im blind in my right eye although dont be fooled into thinkin this means i only see black. i can see you waving your hand 3inches from my face only your hand looks like picasso sculpted it. im partially sighted in my left (6/18 if you want to get technical). photophobia means my eyes are extremely senstivie to light so i usually have my sexy sunnies on when im outside even in the rain. i have to introduce you to phylis at this point.
phyilis is my white cane. iv had many before her but she has truely been the most...how can i put it...attitude problematic of them all. she loves nothing more than tripping me up, hitting people and occasionally feels the need to fly through the air and create a commotion.
she was really tough to work with in the begining last year and it took quite a few attempts at finding the right tip for her that worked best. in the end she decided she would only stop getting stuck in ddrains if she wore teh biggest ball tip rnib sold. not the most lady like tips but it keeps her happy.
the sad news is that phylis will be retiring this week. she hasnt been able to fold up for about 6months after getting stiffer after every use so she spends most her spare time perched in the corner of the porch.
also because of another conditiion i have im no longer able to grip her enough to have control over how she moves. so i have ordered a new cane with a fatter handle and a few inches longer so i can feel further in front of me. phylis doesnt kno this yet. i just havent found the right time to tell her.

so onto my next damaged stock...my genes and more importantly my collagen.
because my mum loves me so much shes shared with me alot of her faulty genes. the one that causes the most problems is one that causes a defect in my collagen (the stuff that makes your joints, tissues, muscles, ligaments, skin, organs, etc etc) move the way they do. your collagen is made up of vertical lines andhorizontal lines which gives you the ability to move your body the way you do ie to walk, bend a finger, wink, etc etc. but most inportanlty you have a X like part that stops your collagen from moving or tretching too far. this is what holds you together, stops your joints from bending the wrong way and snapping, gives your skin its toughness, stops your organs flying around inside you, gives your muslces the tension to support your body, the ligaments and tendons the knowledge to know when to stop streching. all of these things keeps your body together, keeps it mobile and able to do all the things our bodies do and most importantly stops you from injuring yourself.
i dont have the X link, or if i do its pretty feeble. this is what causes hypermobility syndrome. it basically means im too flexible and stretchy. while this is a huge advantage in extreme twister and hide and seek (its amazing the tiny places you can squeeze into when your body folds up so well) it causes alot of problems which range from mild anoyance to quite physically disableing.
because of hypermobility syndrome (i may refer to it as hms or hypermobility tho hypermobilty is not the same as hypermobility sydrome)my body is falling apart literally. because i dont have the abliity to stop from over stretching, moving in the wrong direction etc i dislocate joints really easily ie i have dilocated my hip getting out of bed, rolling oer in bed, my knee sitting up, and my anckle walking dowanstairs. these are just as painful as when anyone would dislcate themselves but one bonuse of the insane loose joints is that usually i can manage to get them to go back into place without having to go to casuality.
as well as dislactations you get sublaxations. these are like partial dislocations in that the joint doesnt come out of the socet but it moves out of alinement. it doesnt sound much to complain about but if you imagine your knee twisting to the outside of your leg and not being able to move it is still a painful thing. i get these alot more than the dislocations (the lesser of the 2 evils). the main time is in my left kne when im walking sometimes on every step. so it feels like my knee has buckled really bad and i drop till i can move the leg back in place and the knee cap. sometimes i have to stop ad push the kneecap back. this coupled with my loose hip means i walk with quite a hobble which at times looks more like a drunk swagger.
other things that hms causes is chronic pain. for me this in constant 24 ours a day aching everywhere like whe you have bad flu. then i have more intense pain in my joints and usually a few times a day my lower back gets extremely painful and locks up.
becauses of how instable my joints are i cant stand unless i have something to lean on. wlaking is a bit easier but it is painful and exhausting and i tend to use phylis my white cane like a walking stick every 10mins or so to keep me held up.

one of the symptoms that i find hardest to cope with emotinally is the exhuation. its pretty much the same type you get with ME. it comes from nowhere and hits you like a 10tonne truck. i usally get about 10mins warning that its coming so have to find quickest way to get home while overdosing on lucazde to keep me going enough to get home.

when it hits, it hits. i cant exlains what its likel. its not feeling tired, not even extremely tired,. its a completely different feeling to tiredness. it feels like you body has turned to lead and all your energy has completely gone. to try to get your body to do anything is so hard. if i sit in a chair when i get like this i cant even lift my head up becuase its just too heavy and even breathing becomes more of a concisous task. if i try to push through it i usually end up crying because its just such a horrible experince. usually i crawl upstairs and flop on bd and im usually asleep for 5ish hours. this usually happens every day in the afternoon regardles of whethere iv had a really chilled day at home or if ive been out all day round the shops.
i try to stay awake and just lie on my bed with all my body supported so its fully resting and watch a dvd. sometimes i fall asleep but if ive caught it in time and got to bed i can sometimes stay awake and just doze off and on.

becuase of what hypermobility syndrome does to your body you are at high risk of develping early onset osteoarthritus. i have it starting in my spine, elbows and hands but its not too bad yet.
other conditions you are more liely to develp include fibromyalgia, CFS/ME flat feet, ibs, bad scarring due to skin not beein tough enough to heal properly and lots of other stuff.
most people with the syndrome have various aids they use whether is joint splints, tools aroudnt the house to help with opening things etc, walking sticks, wheelchairs, special beds, rails ot grab on to around the house, shower chairs, scooters etc etc.

i was born with this condition but its took 27years for doctors to finally take me seriously and look into it. i was diagnosed finally a few weeks ago. ive been repeatedly told all my life that my problems are growing pains as a kid, anxiety, in my head, attention seeking etc etc.

it really angers me to think there are so many people suffering with this horrible condition and doctors are just not paying attentino. becuase doctors are trained to look for simplest explaination they often miss the rare conditions (like hms) and so sufferes spend years and years being told theres nothing wrong.

i hae another dodgy print tshirt from the reject bin that god used to make me but il go into that another time.

iv never kept a blog but i decided that i cant keep putting on this 'brave' face that people see. i cant be positive all the time, that its ok to have a moan when life is tough. just do your moan and get on with your life. ive not been doing this iv been ignroing all the thigs that are getting at me and its built up and myhead is close to exploding so i thought if i keep a blog. its like having a good moan or vent but im not getting on peoples nerves complaining when i have such a good life.

so read if you want to dont if you dont. comment if you want to. this is mainly for me to just let some stuff out before i go pop.

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