End of 2011 Thoughts
Jan. 6th, 2012 10:04 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jeshyrThis 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
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
no subject
Date: 2012-01-06 12:31 pm (UTC)no subject
Date: 2012-01-06 03:43 pm (UTC)no subject
Date: 2012-01-06 05:58 pm (UTC)no subject
Date: 2012-01-06 06:26 pm (UTC)no subject
Date: 2012-01-06 07:45 pm (UTC)no subject
Date: 2012-01-06 08:46 pm (UTC)no subject
Date: 2012-01-06 11:28 pm (UTC)And then I start worrying that if my hands are this bad, what is the rest of me REALLY like (because I don't routinely get x-rays done of various joints) and how bad am I going to be in another few years, particularly if I lose insurance and have to stop the systemic medications again? O.O
I think I need to go see a legitimate pain management specialist but with my mom's stuff there just hasn't been any time to fit in an appointment and then I go off on tangents worrying about starting on stronger painkillers anyway and talk myself out of going to see someone.
In short: Brains and bodies are both really VERY ANNOYING at times and should behave better.
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Date: 2012-01-06 11:48 pm (UTC)Amen.
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Date: 2012-01-06 11:56 pm (UTC)*hugs*
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Date: 2012-01-07 11:59 pm (UTC)no subject
Date: 2012-01-08 12:00 am (UTC)no subject
Date: 2012-01-08 12:01 am (UTC)I have a *ton* of notes for $specialist-1 when I go there tomorrow but with different complex diseases that interact I don't have anybody who understands the whole mess which SUCKS.
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Date: 2012-01-08 12:01 am (UTC)no subject
Date: 2012-01-08 12:01 am (UTC)no subject
Date: 2012-01-08 12:02 am (UTC)no subject
Date: 2012-01-08 12:03 am (UTC)I keep assuming that my body will follow some basic rules (like, y'know, behave how medical science says it should) and it doesn't and it makes me crazy frustrated! And the doctors are all "if you do A, then B will happen" and it sadly often degenerates into "since B hasn't happened, you must have not done A" and I have done A and it's scary and I feel blamed :(
BLAH! STUPID BODY!
*lines up with you for an upload to the matrix*
no subject
Date: 2012-01-08 01:31 am (UTC)wishing you better days
Date: 2012-01-11 04:34 am (UTC)so sorry to hear of the decline in hours out of bed each day. I hope this will improve for you and I totally understand the frustration.
best wishes
Anne