20220117 : swallowing... time table

Many folks have said (blessed me) and predicted that I will be able to swallow / eat soon.

I am actually terrified of the idea. Very very terrified...

Don't get me wrong, I would love it if I started eating. But there is no fairy  godperson who will swoosh their wand and I will start eating after.

I get up at 8:00am. I could wake up sooner, but that is when I am brought up from the sleeping position. It takes about 10 mins to remove the afo braces , the knee brace (need both in the night to stop the leg from doing it's own thing at night and make it uncomfortable), then remove the socks. Pull me up the bed (I will have slid down in the night. Remove the sweater (which is no easy job to do with a limp body).

After that is feed.

Then is wipe the face with warm water, comb the hair, apply lip balm, etc. 

Basically make me presentable. 

All this takes about 20 minutes.

My physiotherapist comes anytime between 8:30 and 8:45am. Sometimes even becomes 9:00am.

The physiotherapy session will go on till 10:00 - 10:15am

But standing with the frame is the last thing we do and I continue to stand till 10:30am.

10:30am is feed and I have to get back to the bed and sitting position. Lying on the bed upright actually.

11:30am is sponge bath.

The time between 10:30 - 11:30am is unpredictable.

Sometime inbetween I get a mouth care (20mins usually)

Every 2-3 days, I also get a shave (typically 20 - 25 mins)

The sponge bath goes on from 11:30 - 12:30pm (and also why I am frustrated with the process and speed). (I am trying to get some time back).

12:30pm is feed.

1:00pm I do the bedside sitting.

1:30pm I do standing again with the stand.

2:00pm I do exercises with the sling ( for the right leg and right hand). About 15 - 20 minutes.

2:30pm is feed.

3:00pm is the bout (afternoon oral feed). I last about 15 - 20mins everyday, battling against about 6-10 spoons.

The after match recovery takes ~ half an hour (coughing, struggling,etc)

3:45pm is nebulization. Takes 10 min.

At 4:00pm I move to the wheelchair.

Typically doing exercises for the left hand, left leg, neck, face etc. It's not a lot but takes 2 hours for me with breaks inbetween.

At 6:00pm I do the breathing exercises routine (respirometer, some whistles, blowing the candle). Usually the drill takes about 20-25 mins)

After that, either I sit watching everyone around or watch some TV with the kids.

I usually move back to bed between 8:00pm - 8:30pm. I could sit out for a little longer, but subsequent activities compel me to shift back by then.

After I shift back, the first thing to do is a change and wipe down fully (I will have definitely wet the diaper by then).

8:30 - 9:15pm typically is the change.

9:30pm is feed.

11:00pm is nebulization again.

11:15pm start the preparation - put on socks, the braces for the legs, sweater (putting it on is harder), pull me up and reposition.

11:30pm is feed

After that is sleep. (After my prayers of course 🙂)

This routine rarely changes anyday.

I have some time from 8:20am till I start physiotherapy. But since the start time is not predictable, I can't do anything focussed.

Between 10:30 - 11:30am, I get some time, but very interrupted.

I get ½ hour uninterrupted time from 12:30 - 1:00pm

I again get ½hour from 2:30-3:00pm

I wouldn't count any minute from 3:00 - 4:00pm😅

After all the exercises in the evening - about 6:30 to 8:30pm, I have the phone with me, but I am on the wheelchair with the phone resting on a pillow on my lap, which is needed to support the right hand.

That position is quite hard for typing with the left hand and also, because the phone is nearer and my short sight, I struggle to see anything on it.

Besides, I am sitting outside to be with my family - don't want to be on the phone if I can avoid it.

Between 9:30 - 11:00pm is solid 1½ hours of uninterrupted me time when I am able to really focus and do anything.

All the pigeon-holes of brief times inbetween, I use to catch up with everyone on WhatsApp. I can't focus on anything else.

Going by how this body is responding to any therapy, it will take a very very long time to start to learn and strengthen anything.

The last time it did something with the swallowing is in sep-oct-nov of 2020 with intense therapy, using vitalstim (electrical stimulation for the throat muscles) and swallowing sessions at least 4-5 times a day in the hospital.

After nearly 3 months of that, I was managing about 500-600ml a day; with 100-150ml in one session.

I gathered I had to do 300-500ml a day for them to decanulate (remove the trachiostomy tube).

Right now I am able to do 6-10 spoons, and that takes 15-20 minutes.

I know it will be hard. Extremely hard. Lots of effort, aspirations, cough, breathing struggle, etc.

It is a very dark tunnel, but I know I have to go through. There is no other way.

That is not my main nightmare.

Where is the time for it? When do I fit it in?

Experience shows in the peak performance, I needed half an hour for 150ml (less than a glass which is 200ml)

Right now, I am managing my existence because the crew is running the engine - shoveling in the coal from time to time to keep it running.

Suddenly we want the engine to help in shovelling. With the end goal of asking the engine to gather its own coal fully?

That will be taking my "existing" to the next level. Just shuttling from exercising-feeding-hygene stuff.

When the bloody heck do I "Live"?