The bar which I am aiming for 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 someone else 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 sroted
- Get wheelchair research done (as the NHS has said they can not give me one to suit my needs, so I am still bed bound)
- Raise money!
Contact people to get help
- 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 beta blockers to take 1 when I have continuous tachycardia (especially annoying when it prevents me getting to sleep!)
- Got a new wheelchair from wheelchair services, less pain but still not good enough to enable me to get out of the house:(
- 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
- Get a power chair that is actually comfortable & suitable!
- Be able to drink more water (preferably the recommended 2 liters 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 feel like I am achieving something.
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
- 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
- Run an after school club
- Get a job
- Work with children
- Be able to look after others rather than having to rely on others looking after me
- Find a doctor willing to look at me as an individual & not have assumptions due to other patients who are not like me.
- Be self sufficient & regain my independence:)