Status Report
Jul. 28th, 2013 02:11 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jeshyrIt's only 3 months since I did one of these now-very-misnamed yearly-ish status reports but I wanted to get a baseline as it's the day before I start saline infusions. This is the simplest way I can think of to be able to track whether they help ... because everything changes from hour to hour and day to day it's often surprisingly difficult to know how I'm reacting to something. So here's my current status:
Positioning -
Before 2010: 24h/day in hospital bed in living room, mostly with head flat.
End of 2010: Regular bedroom for afternoon naps and overnight, hospital bed in living room for days with head approx 40 degree angle.
End of 2011: Bedroom for afternoon naps/overnight, hospital bed 20 degrees on average.
April 2013: Ditto, but hospital bed perhaps 30 degrees on average? A little better I feel.
July 2013: A bit more orthostatically intolerant again, bed back to averaging 20 degrees.
Toileting -
Before 2010: Needing to use (mostly) female urinal and (sometimes) commode beside bed.
End of 2010: Able to walk to the toilet whenever needed.
End of 2011: Ditto.
April 2013: Ditto.
July 2013: Ditto.
Sitting out of bed in recliner, reclined position -
Before 2010: None at all.
End of 2010: 2-3 hours per day.
End of 2011: 0-1 hour per session, with some sitting amount on most days.
April 2013: 0-30 mins per session, with some sitting amount about half the time. Can sit longer for "special" occasions like craft days but need to rest up before and after.
July 2013: 0-30 mins per session when I sit up, but only sitting up perhaps 1/4 of the time. No longer have the stamina to sit up for a whole craft day even with pre/post-resting.
Walking -
Before 2010: None (not even to bathroom).
End of 2010: Walking freely inside house and outside briefly to own garden/back yard.
End of 2011: Walking freely inside house only.
April 2013: Walking inside house only, and not as freely. Very much "saving up" and planning trips so that when I need to walk to the toilet I also do whatever else I wanted.
July 2013: Ditto.
Washing and personal care -
Before 2010: Needing complete care - bedbaths by carer occasionally only.
End of 2010: Showering and washing hair independently easily, need shower chair with feet up. Able to shower every 1-2 days.
End of 2011: Same although not so easy, approximately every 2 days.
April 2013: Showering and washing hair independently with difficulty every 2-4 days, self-administered 'top and tail' in between. Need carer's help to dry self. Considering crew cutting hair again as it looks very bad between washes.
July 2013: Hair cut short. Showering about once a week, with self-done cloth washes between.
Medical trips out -
Before 2010: Essential medical trips only, usually via stretcher ambulance or being driven and using manual wheelchair.
End of 2010: Able to go by myself (using powerchair and wheelchair taxi) or be driven by somebody willing to push my manual chair around when we get there.
End of 2011: Ditto.
April 2013: Ditto.
July 2013: Ditto. I notice that I am tilting my wheelchair back more and more when I do though.
Fun trips out -
Before 2010: Zero, not even Christmas/birthdays.
End of 2010: Able to go out for coffee and even for a few hours to a party. Can pop down to the local shops in powerchair 1-3 times per week for an hour or two, with occasional longer trips eg into city.
End of 2011: Able to go to local shops in powerchair 1-2 times per week short trips only.
April 2013: Able to go to local shops in powerchair 30 mins-2 hours approx once a week, OR take a longer trip eg movies (with powerchair) or medical trip such as Alfred Hospital with additional resting each side.
July 2013: Almost no non-medical powerchair trips lately, perhaps one every 2 weeks averagely. No more movies.
Exercise/PT ability -
Before 2010: Absolute maximum is isometric physiotherapy exercises lying in bed for less than 5 minutes a day.
End of 2010: 30 minute exercise routine involving sitting and even some standing plus 6-8 mins on recumbent exercise bike, and being able to slowly swim 200m in my local pool several times of week.
End of 2011: 10 minutes of physio (lying or sitting on floor) including 4-5 minutes on exercise bike, no swimming.
April 2013: No organised physio at this time, but I can do 5-10 mins of physio lying/sitting on floor if I try.
July 2013: Nothnig.
Balance -
Before 2010: Having difficulty balancing with both feet together on the floor.
End of 2010: Able to balance on one leg until I start to get dizzy (ie: I lose balance because my blood pressure gets low, not because my balance is crappy).
End of 2011: (did not record)
April 2013: Balance is less good than before, but not as bad as pre-2010 levels.
July 2013: Ditto.
Intellectual functioning -
Before 2010: Very crappy.
End of 2010: Doing some programming again and some OpenUniversity lectures.
End of 2011: Can't manage programming or OU lectures, but not as bad as pre-2010 levels.
April 2013: Brain seems less bad - working on studying physics.
July 2013: Approx the same on a good day, but having more "bad" days where I just watch funny cat videos.
Sleep:
April 2013: No sleep problems unless I have a migraine or mast cell attack, both of which cause insomnia.
July 2013: Insomnia becoming regular even without migraine or mast cell attack. For the past few weeks I keep sleeping through my PCA shifts, or nearly so, which is hard to deal with.
There we go. Wish me luck for tomorrow ...
Hugs,
r
Positioning -
Before 2010: 24h/day in hospital bed in living room, mostly with head flat.
End of 2010: Regular bedroom for afternoon naps and overnight, hospital bed in living room for days with head approx 40 degree angle.
End of 2011: Bedroom for afternoon naps/overnight, hospital bed 20 degrees on average.
April 2013: Ditto, but hospital bed perhaps 30 degrees on average? A little better I feel.
July 2013: A bit more orthostatically intolerant again, bed back to averaging 20 degrees.
Toileting -
Before 2010: Needing to use (mostly) female urinal and (sometimes) commode beside bed.
End of 2010: Able to walk to the toilet whenever needed.
End of 2011: Ditto.
April 2013: Ditto.
July 2013: Ditto.
Sitting out of bed in recliner, reclined position -
Before 2010: None at all.
End of 2010: 2-3 hours per day.
End of 2011: 0-1 hour per session, with some sitting amount on most days.
April 2013: 0-30 mins per session, with some sitting amount about half the time. Can sit longer for "special" occasions like craft days but need to rest up before and after.
July 2013: 0-30 mins per session when I sit up, but only sitting up perhaps 1/4 of the time. No longer have the stamina to sit up for a whole craft day even with pre/post-resting.
Walking -
Before 2010: None (not even to bathroom).
End of 2010: Walking freely inside house and outside briefly to own garden/back yard.
End of 2011: Walking freely inside house only.
April 2013: Walking inside house only, and not as freely. Very much "saving up" and planning trips so that when I need to walk to the toilet I also do whatever else I wanted.
July 2013: Ditto.
Washing and personal care -
Before 2010: Needing complete care - bedbaths by carer occasionally only.
End of 2010: Showering and washing hair independently easily, need shower chair with feet up. Able to shower every 1-2 days.
End of 2011: Same although not so easy, approximately every 2 days.
April 2013: Showering and washing hair independently with difficulty every 2-4 days, self-administered 'top and tail' in between. Need carer's help to dry self. Considering crew cutting hair again as it looks very bad between washes.
July 2013: Hair cut short. Showering about once a week, with self-done cloth washes between.
Medical trips out -
Before 2010: Essential medical trips only, usually via stretcher ambulance or being driven and using manual wheelchair.
End of 2010: Able to go by myself (using powerchair and wheelchair taxi) or be driven by somebody willing to push my manual chair around when we get there.
End of 2011: Ditto.
April 2013: Ditto.
July 2013: Ditto. I notice that I am tilting my wheelchair back more and more when I do though.
Fun trips out -
Before 2010: Zero, not even Christmas/birthdays.
End of 2010: Able to go out for coffee and even for a few hours to a party. Can pop down to the local shops in powerchair 1-3 times per week for an hour or two, with occasional longer trips eg into city.
End of 2011: Able to go to local shops in powerchair 1-2 times per week short trips only.
April 2013: Able to go to local shops in powerchair 30 mins-2 hours approx once a week, OR take a longer trip eg movies (with powerchair) or medical trip such as Alfred Hospital with additional resting each side.
July 2013: Almost no non-medical powerchair trips lately, perhaps one every 2 weeks averagely. No more movies.
Exercise/PT ability -
Before 2010: Absolute maximum is isometric physiotherapy exercises lying in bed for less than 5 minutes a day.
End of 2010: 30 minute exercise routine involving sitting and even some standing plus 6-8 mins on recumbent exercise bike, and being able to slowly swim 200m in my local pool several times of week.
End of 2011: 10 minutes of physio (lying or sitting on floor) including 4-5 minutes on exercise bike, no swimming.
April 2013: No organised physio at this time, but I can do 5-10 mins of physio lying/sitting on floor if I try.
July 2013: Nothnig.
Balance -
Before 2010: Having difficulty balancing with both feet together on the floor.
End of 2010: Able to balance on one leg until I start to get dizzy (ie: I lose balance because my blood pressure gets low, not because my balance is crappy).
End of 2011: (did not record)
April 2013: Balance is less good than before, but not as bad as pre-2010 levels.
July 2013: Ditto.
Intellectual functioning -
Before 2010: Very crappy.
End of 2010: Doing some programming again and some OpenUniversity lectures.
End of 2011: Can't manage programming or OU lectures, but not as bad as pre-2010 levels.
April 2013: Brain seems less bad - working on studying physics.
July 2013: Approx the same on a good day, but having more "bad" days where I just watch funny cat videos.
Sleep:
April 2013: No sleep problems unless I have a migraine or mast cell attack, both of which cause insomnia.
July 2013: Insomnia becoming regular even without migraine or mast cell attack. For the past few weeks I keep sleeping through my PCA shifts, or nearly so, which is hard to deal with.
There we go. Wish me luck for tomorrow ...
Hugs,
r
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Date: 2013-07-28 04:27 am (UTC)Good luck tomorrow!
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Date: 2013-07-28 06:55 am (UTC)no subject
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Date: 2013-07-29 12:14 am (UTC)♥♥♥♥♥♥♥♥
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Date: 2013-07-29 09:33 am (UTC)