The bar which I am proud to reach is getting constantly lower the more ill & disabled I get. But here goes...

This quote from one of the main characters of Bones (a TV series I really enjoy) resonates with me: "At the end of the day I want to be someone who's given more than they've taken- Booth." (Bones S11 Ep18 ) That is what I desperately want too.

What I am aiming to achive at the moment:

  • Do physiotherapy exercises once a week
  • Force myself to drink enough
  • Eat enough to prevent weight loss
  • See another doctor to get my knee problem fixed
  • See if I can get my misshapen right leg corrected back to normal
  • Find someone willing to give me a back brace so I can sit up & prevent my spine from getting more curved & reduce stomach problems.
  • Get my new bathroom sorted
  • Get my new bedroom sorted
  • Raise money!
  • Update this website more often!

What I have recently achived:

  • Been able to do simple physiotherapy (due to pyridostigmine)
  • Been able to shower, with help, more often (due to pyridostigmine)
  • Tried new anti nausea medication which actually helps!
  • Eating smaller more frequent meals
  • Got Diltiazem to take 1 when I have continuous tachycardia (especially annoying when it prevents me getting to sleep!)
  • I have updated this website :)

What I want to achive in the not-so-distant future:

  • Manage to be sitting up all day (without my vision going fuzzy or passing out)
  • Have a trip out of the house (not on a stretcher in an ambulance) but in my wheelchair
  • Take less than 3 hours to wake up & be able to move
  • Be able to drink more water (preferably the recommended 2 litres for POTS)
  • Be able to eat a small meal without fainting & being ill for 3-4 hours after
  • Not get completely wiped out so quickly
  • Be able to do more for myself again
  • Be able to play Watchmen on the PS3 with my sister without my hands giving up! 
  • Gain strength, and musclemass
  • Be able to do more EDS specialist physiotherapy
  • Not need to sleep for any more than 10 hours a day
  • Manage to get to sleep more easily/quickly
  • See friends more often
  • Move into my grandmas old bedroom (with en-suite bathroom)
  • To be able to create art again.

What I want to achive in the more-distant-future:

  • Regularly get out of the house in my wheelchair
  • Take my sister to Alton Towers for the day (it used to be a joint birthday tradition)
  • Go the the Metro Center with my God-daughter
  • Regularly get washed & dressed
  • To move about during the day without being exhausted, hot & sweaty, breathless etc. and needing to rest for hours/ days after
  • Get my brain functioning better (damn you brain fog!)
  • Read an entire book
  • Play PlayStation games
  • Generally have more energy & be able to do more for myself

What seems like a distant dream:

  • Be able to walk further
  • Find a doctor willing to look at me as an individual & not have assumptions due to other patients who are not like me.
  • Manage going on holiday
  • Encourage everywhere to be more wheelchair friendly (I regularly leave feedback, but it is often not enough to create change)
  • Go back to university
  • Complete my Teaching Degree
  • Start driving again
  • Pass my driving test(s)
  • Move into my own house
  • Get a job
  • Work with children
  • Run an after school club
  • Be able to look after others rather than having to rely on others looking after me
  • Not need to ask for any more financial help from anyone.
  • Be self sufficient & regain my independence:)