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.
