blindbendy. wake me up if im sleeping

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.

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.

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

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.

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.