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jeshyr: Blessed are the broken. Harry Potter. (Default)
TL;DR version: About the same.

This is incredibly boring, but being able to look back is useful.

Full status report here... )

r
jeshyr: Blessed are the broken. Harry Potter. (Default)
Where 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.

Full status report here... )

r
jeshyr: Blessed are the broken. Harry Potter. (Broken)
It'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:

Full status report here... )

There we go. Wish me luck for tomorrow ...

Hugs,
r
jeshyr: Standrd glyphs representing disability, blindness, interpreters and information. (Disability)
I've done a few yearly status reports before but I somehow missed the end of 2012, so here's a somewhat belated version ... it's even a bit more organised and formatted so perhaps it'll be more useful to show doctors how things have changed ...


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.

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.

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 day, with some sitting amount on most days.
April 2013: 0-30 mins per day, 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.

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.

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.

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.

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.

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.

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.

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.


Overall, my health isn't as good as it was at the end of 2011 or the heady heights of the end of 2010, but it's still far far better than the awful pre-2010 days too.

My confidence in 'pushing' to do things such as trips to Alfred Hospital or to the movies or sitting up for craft days is higher, although they make me feel bad afterwards it's fairly predictable and I can deal with that OK.

I think my intellectual functioning is better on most days, although it's still spotty. I switched from teaching myself programming to learning physics as I got sick of re-learning the same programming stuff!!



That's all I can think of for now, anyway. It gives me a good record to come back to later.

Cheers,
r
jeshyr: Blessed are the broken. Harry Potter. (Default)
This is an update to go with my End Of 2010 Thoughts post.

I had to make notes for an upcoming doctor's visit so it's not as much expanded as it could be, but I think it makes sense...

My energy and general abilities are down significantly compared to 12 months ago. For example:

a) Was able to sit out of bed 2-3 hours/day. Now 0-1 hour/day.

b) Was able to walk outside briefly. Now inside only.

c) Was using hospital bed with the head raised to around 40 degrees from horizontal during the day. Now more like 20 degrees on average.

d) Exercise routine was 30 minutes physio including 6-8 minutes on recumbent exercise bike, or ~200m at pool. Now able to do 10 minutes of physio including 4-5 minutes on exercise bike, no swimming.

e) Was able to go out 1-3 times per week including some longer trips. Now 0-2 times per week short trips only.

f) Brain was functioning well enough that I was doing some programming again and some OpenUniversity lectures early this year. Can't do this at all now and have had to stop programming.

g) My allergy symptoms have been getting steadily worse all year despite allergy meds. This is being seen to but it's yet another problem I have to deal with.


I'm not nearly as bad as I was before 2010, but I'm definitely on a downhill patch. It's depressing and a bit scary and a lot frustrating, as it's been gradual but apparently inexorable. I don't know what's causing the decline and so I don't know how to stop it. I hate being helpless!!

(Note: Please don't point out how much better I am than the worst, or anything about gratefulness. I know I'm better than then and I am grateful - hugely grateful - that I'm this healthy. Being grateful doesn't stop me from also being frustrated, sad, or scared that I'm in this position now though. I just find it quite upsetting when I say "i'm scared/sad/frustrated" and people say "be grateful!" because it feels like they're missing the whole point)

Love you all,
r
jeshyr: Blessed are the broken. Harry Potter. (Default)
I've been meaning to write some end of year stuff because this year has been such an unbelievable one for me... The one-sentence description of this year is "I am healthier now than I thought I would ever be in my life!"

How's that for a year!

This year I have advanced from...

... from no daily sitting out of bed to 2-3 hours daily out of bed. I can sit up longer if I push but then the next day I pay for it.

... from not able to walk around the house at all (not even to the bathroom) to being able to walk around the house at will and even walk outside very briefly.

... from needing to use (mostly) female urinal and (sometimes) commode beside bed, to being able to always use commode beside bed, and now to being able to walk to the toilet whenever needed.

... from needing to be washed by a carer while lying in bed to being able to shower and wash my hair by myself, needing just a shower chair to sit down in.

... from spending all my time in a hospital bed in the lounge to having a regular bedroom and using my hospital bed as a "day bed". See blog entry 'Bedrooms!'

... from being predominantly horizontal while lying in bed to mostly sitting at around a 40 degree angle when in bed during the day.

... from having to be taken via stretcher ambulance to vital hospital appointments to being able to go by myself (using my powerchair and wheelchair taxi) or being driven by somebody willing to push my manual chair around when we get there.

... from doing physiotherapy lying in bed for less than 5 minutes a day to being able to do a 30 minute exercise routine involving sitting and even some standing, and being able to slowly swim 200m in my local pool. Actually I am doing a bit less physio now I am able to walk around the house as I am using up some amount of energy with the walking around, but I'm still increasing the amount of energy I have.

... from having difficulty balancing with both feet together on the floor to being 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).

... from having no social outings to being able to go out for coffee and even for a few hours to a party. I was able to attend Quiric's baby shower, attend Renee's Midsummer party for the first time in either 8 or 9 years (we lost count!) and will be attending Thorfy and Seedy's new year BBQ tomorrow. And I spent Christmas at my parents' place with my family - it wiped me out tremendously, but I stayed as long as all the other guests!

There are, of course, a whole bunch of other things that lead from these basic abilities. For one example, I can get myself a very simple meal now by grabbing something from the freezer and sitting on the kitchen floor while it microwaves. I can answer the door in person instead of using the remote control unlocking device if I so choose, which often has a gratifyingly startling effect on anybody who knows me and has come to visit!

I can also use my powerchair to visit the local shops and I go out to see my massage therapist and physio now instead of needing home visits. I've been to the library a bunch of times too which is brilliant, and am planning to go see a movie with my Mum soon.

So yes, basically 2010 has been so utterly unbelievably wonderful that it's beyond my WILDEST expectations and almost beyond belief even for me - and it's happening to me! If 2011 is even 10% as wonderful as this year has been, I will still feel blessed.

Here's to a healthy and happy 2011 for all of us.

Love,
r

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jeshyr: Blessed are the broken. Harry Potter. (Default)
Ricky Buchanan

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