Status Report
Apr. 3rd, 2014 11:22 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jeshyrWhere does the year go? Nine months since my last very-misnamed yearly-ish status reports so here’s another one ... mostly because my most awesome myotherapist asked today whether I was tracking functioning and I said "Yes" and then thought "When did I last do that?" So here's one for Elaine :)
TL;DR version: Health sucks a bit more than it sucked before.
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.
April 2014: About the same I think? Bed 20-30 degrees during day, flat on waterbed 3-6pm and overnight.
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.
April 2014: 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.
April 2014: 0-30 minutes per session once or twice a week usually for a meal, plus 1-2 hours for "special" occasions perhaps once a month.
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.
April 2014: 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 crew cut. Showering about once a week, with self-done cloth washes between.
April 2014: Hair still crew cut. Showing less than once a week with cloth washes between. Planning to ask for help with showering from now.
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: Similar but can’t manage manual chair. I notice that I am tilting my wheelchair back more and more when I do go out.
April 2014: Ditto.
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.
April 2014: Barely ever going on non-medical trips, special occasions once every 1-2 months only, no 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: Nothing.
April 2014: Worked really hard for 6 months on sitting/standing exercises but couldn’t increase functioning. See new exercises, graph of disappointing results, and final cardio appointment for details. Doing 10-15 minutes of sitting/standing plus physio per day now, very minimal.
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.
April 2014: Ditto. To quantify a bit, I can balance on either foot for about 5-10 seconds on a flat/level/unmoving surface on a good day.
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.
April 2014: Ditto.
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.
April 2014: CPAP machine is helping a lot with sleep, and migraines and RLS have been successfully treated which helps a lot. Still insomniac frequently but not to a debilitating extent.
r
TL;DR version: Health sucks a bit more than it sucked before.
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.
April 2014: About the same I think? Bed 20-30 degrees during day, flat on waterbed 3-6pm and overnight.
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.
April 2014: 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.
April 2014: 0-30 minutes per session once or twice a week usually for a meal, plus 1-2 hours for "special" occasions perhaps once a month.
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.
April 2014: 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 crew cut. Showering about once a week, with self-done cloth washes between.
April 2014: Hair still crew cut. Showing less than once a week with cloth washes between. Planning to ask for help with showering from now.
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: Similar but can’t manage manual chair. I notice that I am tilting my wheelchair back more and more when I do go out.
April 2014: Ditto.
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.
April 2014: Barely ever going on non-medical trips, special occasions once every 1-2 months only, no 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: Nothing.
April 2014: Worked really hard for 6 months on sitting/standing exercises but couldn’t increase functioning. See new exercises, graph of disappointing results, and final cardio appointment for details. Doing 10-15 minutes of sitting/standing plus physio per day now, very minimal.
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.
April 2014: Ditto. To quantify a bit, I can balance on either foot for about 5-10 seconds on a flat/level/unmoving surface on a good day.
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.
April 2014: Ditto.
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.
April 2014: CPAP machine is helping a lot with sleep, and migraines and RLS have been successfully treated which helps a lot. Still insomniac frequently but not to a debilitating extent.
r
no subject
Date: 2014-04-06 09:42 pm (UTC)Best wishes.