20230206 : IV years

6th February back again! 

4 years today. 1,460 days (1,461 actually - leap year inbetween 🙂)

Why does it seem to me like 4y is a long time but 1,461 days feels less? Seemed like it last year too. I don't know if others feel the same thing.

It's my 4th Strokeversary as referred to in our the Stroke Support Group that I am part of ...

It's actually the 4th death anniversary of mine. 

It is also the 4th birthday of mine... 

"The king is dead, long live the king" types... Worried about the 2nd part of that slogan becoming real though....

I am a strange being with the mind of a 47y+ old and the body of a 4y old... 

So how was last year for me?

Physically speaking, going in the right direction. Extremely extremely slow, painfully slow, frustratingly slow - but the needle is moving and moving in the right direction.

The only gauge where the needle has not moved (moved in the wrong direction actually) is with swallowing. Big one that! Unfortunately there has been no encouraging movement.

I can't exactly say I am disappointed - as I have reduced my expectations very very low with everything. However, I am guessing there is still some residual hope and that makes me feel sad! The thought that I might never again eat in my life saddens me no end! I used to love food a lot! 

 I wonder what I would have eaten if I knew the dinner on 5th feb 2019 would be my last meal. (I probably would have died by overeating anyway if I knew 😂)

It was not so bad for maybe 3½ years or so. I had become quite immune to the feelings triggered by seeing foods. However, over the last 6-8 months, my sense of smell has slowly improved. Earlier I could smell almost nothing, but this year it has been improving. I am pretty sure my mind was not prepared for such a sensory assault after 3½ long years. The smells drive me mad everyday. Whether it is garnishing different things, fresh coffee brewing, different masalas, spices, subzis, mixed rice, etc., the smells drive me crazy.. I almost always know what is cooking everyday and what I will not be eating that day. I guess the thought that the writing is on the wall is very hard to digest! 

Mentally speaking it has been probably the hardest of the 4 years.

The first 2-2½ years was relatively easy for the mind. After the initial couple of months coming to terms with what had happened, it was easy. I couldn't do anything - so it was easy to not get affected by situations. Every situation had a straightforward response from my mind - "what can I do? Nothing!" So it was easy to - sort of - be detached from everything. 

3rd year I guess was spent in the novelty of being able to communicate (even if it was just WhatsApp and email). I guess I was just enjoying that ride and getting used to it and more comfortable with it.

However, the last year has been a year of exploring boundaries of what to get done with my ability to communicate with others. I am still bedridden and don't do anything myself, but with the help of many friends, family and well-wishers, being able to get things done.

And that is haunting!

When I was ok - I would do what I could. It was reasonably clear in the mind what I can do and what I cannot. However, with this approach, it is never clear what can be done.

And that weighs heavily on the mind! On each thing, I am unable to let go and lay back. There is a constant nagging thought of "am I trying enough?", "Am I thinking this through correctly?", "Am I approaching it the right way? .

 If I can't get something done, I can't let go. "Have I tried enough?", "have I tried everything?", "am I giving up easily?", etc. 

People whom I drive mad regularly will certainly know what I mean..

That is very draining... 

It is also pressurising - In a very different way. I know most folks I am close to - will do stuff for me if I ask. They definitely will. Before the stroke, they probably would have said no or thought twice. In any case, there would be very little reason to ask. Now I know for sure they will. So I have the added pressure to be judicious and consider the need and not take undue advantage of the kindness and goodness of folks. That plays on the mind constantly as well...

Anyway, an evaluation of the body every year is customary - so here goes... (I guess I will go toe to head!)

* Left Foot - Ankle seems ok, but less mobility and strength in the toes.

Left leg - I am guessing getting stronger slowly. No change flexibility or range of mobility though 

* Right foot - nothing. I have to be in a splint most of the time . The ankle just buckles without it. Nothing with the toes either. 

* Left leg - little more movement in the thigh. Nothing below the knee. Thigh very slowly picking up. Can drag the leg better than earlier. Can't lift it though - different set of muscles needs to wake up for that. 

* Hip - I am unable to make out changes on the left side. I am guessing there is some improvement.

* Right hip - I know it is a bit stronger than earlier as it gives better support when I stand. It would completely buckle earlier. 

* Back - I can't make out any changes - I am guessing nothing has changed.

* Abdomen/ chest - nothing as well. 

* Left hand (fingers, wrist, arm, shoulder) - definitely getting stronger. Gross movements only though. Struggle with fine motor skills. 

* Right hand - no change in the wrist/ arm. Shoulder slight movements

* Neck - still weak and head is always tilted font and left side

* Face muscles a little better but most of it still feels like a cardboard.

* A little more movement in the tongue and lips/ jaw - very far from good.

Above sounds like getting the technical specifications of a machine without understanding its functional use 🙂

So, a general overview goes like this:

* Can't get up. Still bedridden and have 2 attenders 24x7

* Can't swallow and still fed by PEG tube.

* Can't talk 

* Still severe incontinence - both 1 & 2

But;

* Can type a lot faster and easier on the phone - can communicate better.

* Can't speak, but can bring out voice a little more than earlier.

* Can't use my right hand but left hand is stronger and can do more.

* Can't move my right leg much but can stand for sometime without support (need folks to make me stand though)

* Can walk few times up and down the hallway in our house (maybe 15ft each way) , using a walking contraption with nurses supporting.

* With the physiotherapist support (him and only him! 🙂 ), I manage to walk that distance with a walking stick or a regular walker - with the right hand strapped to it (as the wrist and fingers don't move). 

* Can't sit up on my own but once put in the wheelchair, can sit for a much longer time. 

* Can use the laptop for sometime and that's a huge huge relief - can open, understand and work on spreadsheets 🙂.(I was going mad on the phone with spreadsheets)

* With the help of a marvelous contraption gifted to me, can play cards with folks - great distraction once in a while.

* An achievement for me - I can stand for 30 seconds - with the eyes closed! 

* And the cherry on top - I think the mind survived the year and still works. I think I Can still think straight 

While the "Can't"s haven't changed much, there are many more "Can"s that are very slowly getting added.

So overall, nothing has changed but almost everything has changed... (Except swallowing of course!).

So what am I expecting in the 5th year? Nothing - just take every day as it comes with no expectations and we'll see next 6th February... 

 

I am very thankful and grateful for many people for doing so much for me and getting me across so far.

It is not an award acceptance speech - so I am not calling out names, but you know if you are one of them. Please also know I am extremely extremely grateful for your presence by my side always.

If you have given me remote support by interactions on mail/ chat etc. Thank you very much for your support. I started my messages/ posts in the first place to have those interactions and I crave for it still.

If you have silently read my messages/ posts, thank you very much as well for listening to the written voice of my mind (with a stroked brain...

 https://mindofmystrokedbrain.blogspot.com