have you got a purple toe?


oh must be me then ^_^

some people asked me what ehlers danlos syndrome is after yesterdays post (for those of you who havent read yesterdays post i explained that i had for the last three years i had been told i had multiple sclerosis then recently i was told it was not that it was ehlers danlos syndrome)

ok so, and please remember i am not a doctor i can only give you the information i have been told and my experience,- but i have a big problem with my bones, yup they is independent little chappies won’t stay in one place, my knees they pop out, my feet bones popping out , and my back rules me with the fiercest pain imaginable all leading to me not being able to walk my back won’t let me anyway but sometimes at home i will try- i have crutches i use round the house and then  my knee will come out and so it goes on, i have big problems with my skin damn thing just complains at the slightest touch falls off me in layers, constantly leaving me with exposed raw and very sore skin my eyes frequently leave me blind because the skin on the eyelids refuses to open and just sits there sulking causing me pain and not opening not attractive and, not much fun i can tell you, specially when i go blind in middle of town pffft,

so the main thing i have been told is ehlers danlos is a problem with collagen , affecting anywhere you need such stuff so my bones dislocate constantly and my skin is rubbish, which makes a lot of sense to me i hope this helps someone out there, so if you have any of these symptoms and your doctor won’t help then ask them to test you for ehlers its a genetic problem apparently and is hereditary so quite important, also if you find you doctor actually listens to you and helps you please let me know because my doctor ranges from amusement to irritation with me and i usually get sent home with painkillers and brufen.

On the upside you do get to have multi coloured toes ^_^ see yesterday i was trying to walk with my crutches, yes i know i have a wheelchair but see i hate being in it i have to have someone to push me for a start and you would not believe the attitude that is displayed towards a person in a wheel chair, unless you already have to be in one if that’s the case you have my full respect and admiration, i hate being in mine, it ranges from people not seeing you even though you are right there next to them to actual outright rudeness.

There has been times -way too many, when if i am with my hubby or daughter both of which act as my carers then people have full blown conversations with them yet not even see me sat right in front of them, the list is endless and i really don’t feel like moaning right now so instead picture the idea that yup i tried walking, slowly, on my crutches, thats it, just walking slowly, my toe dislocated, just for the fun of it i think , maybe my toe figured it never gets enough attention, maybe it feels being the little one it gets thought of last, i don’t know because all i was doing was taking very small, very light, very careful steps supported by my crutches and then crack, hideous pain and lovely purpley blue colours.

ok lets all sing along now,- in the style of the artist formally known as prince;- purple toe, purple toe purple toe, purple toe i only wanted to feel you cause me pain fades out to guitar riff that actually is just me practising new ways of expressing my pain

ok lets all sing along now,-
in the style of the artist formally known as prince;-
purple toe, purple toe
purple toe, purple toe
i only wanted to feel you cause me pain
fades out to guitar riff that actually is just me practising new ways of expressing my pain

ok thats my toe dealt with now have i told you about my nipple problem? no? ok i will share that…………………….in the next post ^_^

have a great sunday everyone and seriously i think everyone should show sympathy by painting their little toes purple come on now you know you want to ^_^

love to all



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