2016

well its been a difficult end to 2015 . lots of changes and personal stuff

but I have 3 wips ( work in progress)

first is a corner to corner baby blanket

2nd is a care bear

and 3rd is some curtain tie backs

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my  disability  and  how  other people  see me.

i have  lots  of   disabilities  ,  but its  the  ones   that  are  not visual  which   means  i  get  comments.

my voice   (dysphonia)    seems  ok  to everyone   but   it  not    my  vocal  cords  are  too  tight.  which  makes my  voice   ( when it works)  to  high  and  i say everything in a rush.

ive had problems  with  my  communication  device   which  went  for repair .

so ive been talking  alot   but  because   the new neigbours  etc  dont  no  my  voice  problem

and dont  relise  i shouldnt be  over  talking.  now  i  have  a  device back im  getting   comments  about 

me not  needing  it.
this  upsets  me  as   they  dont no what its  like  for  me  with a voice  that  faulty.

the  other   problem  is  that   some people    try  to   make  fun  out of  my  devices  voice   ( robot  voice  impesstion and   robot arms)  

this  really hurts    and  yes   i got  an  apologie but  that not  why im  writing.   

not every communication aid  user   is  mute or  deaf and  mute  .  and  it really annoys  me that   people  think its funny.  i also  have  dysthraia   which  means  i   sometimes cant  say  the  word i want.
my other  hidden   disability  is  my  swollowing    my  muscles  dont  work  in the  correct order  and  i have a pocket  in  my throat   which  is  big  and  it  lets food get  stuck 

i have  rsd/crps  which  means  my  neavs  are  on fire  and it  means it  painfull to touch.

i sometimes  cant  move   and  this    is  seen  by people  as im  just  sitting  there.

arthritus  is  mostly  visual  if  u no what look for.
i also  have   full body  restless leg  syndrom  which  means  i   cant  control  what  my arms  and legs are  doing.

i just  wish  that   people  would  relise  that my disability   is  more then  sitting  in  my power chair.
and  just because you  see me moving around  doesnt  mean  it  dosent  happen

   
    
 
thank u  for  listening  

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current project

so far  im  making a coner 2 corner  baby blanket

mittens

cardigan  

socks

booties

hat
but  now   my crps  / rsd  just  started  a  flar   so that means  no more  crochet   for  a while  .  

im  sure  i  get to finnish  my   donation  eventually 

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a letter   to  u

you have no idea  how much  it hurts   when  u stand  there and say  i  don’t need a coommunication aid.

so let me  explain  why i have one

1  i have  very tight  vocal  cords  which   give me a high pitch  and  strained voice.

2 i have cp which  means  my mussles  are tight

3.  my  throat musscles work out of  syn  and  get tired  very  easy   . they lock  up  like cramp.

4. i was supose  to  be resting  my voice but due to my  communication aid  being faulty i  have had 

no choice  but to over  do the  talking.
it has  teken  a long time  to get this   far, where  felt i could  talk to you  with out  feeling embarressed

about my  condition  you  have  just set  me back  years. 
do u think  i  enjoyed  having  to  swollow  a flexible  tube   twice    so  the  hospital could  check  my vocal cords  . 

or the  barrum  meal  for  the  xray to  see why  i cant  swollow food
most people  assume   if  you use  a communication   aid  you cant talk.  but can only  make sound.

this isnt true
there are  many other reasons  a person  has a  communication  device

so  dont   you   say  i  dont  need it  i  have   the  paperwork  to  prove it

and you have  seen  me  in  a non moving  state  and  unable  speak 

yet u still think im  making it up

you  have  hurt  me  and    it will  take  time  for  me  to  trust  u again   if ever i can

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