Date:
Thursday (I had to double check that, days are mostly meaningless for me!) 2nd April 2020
Why
have you chosen to write about today?
Because it was mostly the exact same as every day has been for 6+months- and not many people can say that right now!
Good
morning!
What
time did you wake up?
Around
08:15
Why
did you wake up at that time?
My
carers woke me up. Sometimes I wake up when they access my key safe (which is
mad-loud considering it’s on the outside of my house!) but today they had to
actually walk into my living room- where my hospital bed is- to get any
reaction.
Did
you have a dream?
Not
that I can remember! I’m a deep sleeper and I think I leave my dreams buried
deep, too.
Do
you think today will be 'good' or 'bad' day? (use your own definition of these
words to answer the question)
It
will be much the same as any day! A lot of phone calls (I have a lot of
services involved in my care and it can get oddly hectic), and an overwhelmed
and frustrated crying session. Both of those things are very common in a day,
haha.
What
are the first three things you do after waking up?
Personally,
I do very little immediately after because my carers (shout out to Layla and
Emily for today. Not the best carers, but def the most entertaining 😉) get to work on personal care, a bed bath and
dressing me. So, I suppose I choose the clothes they dress me in. Then, after
all that, drink a thickened- still refreshing, before you ask!- drink that they
spoon me and shout my wife to get up, once the carers have gone.
Do
you eat breakfast? If yes, what did you have?
I
did! My diet is limited because I have problems swallowing, so I can't eat many
quick traditional breakfast foods. But I had mashed scrambled eggs with
mushrooms and ketchup and it was diviiiine
What
would be your perfect breakfast?
Anything
bread-y! I can’t eat any bread or bread type products and I miss them so much.
Ooh, thinking about it, specifically I’d have cheese on toast, since I can’t
have melted cheese either. Cheese on toast also happens to be the only thing I
can cook, haha.
Is
there anything that you have to do today but don't particularly want to?
Be
cared for! I miss my independence, my life a year ago. Getting the train to
work, doing a full day and then showering, feeding myself, going to bed later
with my wife, P- I could cry thinking about it, especially that last one.
List
five things that you do between 9am and noon.
1.
Crack on with my skin care routine. It’s the only real thing I can do for my
own body, so its really important to me. I love trying new products and keeping
my routine fresh.
2.
Nap
3.
Sleep
4.
Snooze
5.
Honestly I’m on a lot of muscle relaxers that relax... everything.
Did
you eat lunch? If yes, what did you eat?
Not
today! I did have a bit of cake mashed with custard mid-afternoon though.
What
would be your perfect lunch?
Honestly,
I could murder a Co-op meal deal. All day breakfast sarnie, Co-op own brand
salt and vinegar crisps washed down with whatever the most expensive drink
allowed is (can you tell I spend too much time thinking about foods I can’t
have?!).
List
five things that you have done, said, thought, or that have happened between
noon and 5pm.
1.
Spent a lot of time back and forwards on the phone with my social worker (I cry
to her A LOT. She’s bloody brilliant)
2.
Laughed with my carers. They do the icky caring stuff but are also extremely
skilled in coping with my crap. I let them shave part of my head last week
though and they weren’t so highly skilled there.
3.
Begged my wife for attention (her working from home is going great for me).
4.
Caught up on all my reality tv. I don’t believe in watching anything cerebral
when I can watch reality and judge strangers.
5.
Decided to buy a new laptop. Then remembered what a tortuous task that is.
Do
you eat dinner/tea? If yes, at what time?
Yep!
Tea was at half 7, just after my carers finished for the day.
What
do you eat?
It
was meant to be chili and mash but it was very mild and a bit like bolognese!
The chili was blended and we eat a lot of mash because its about the only kind
of potato I can have (sob).
What
would be your perfect dinner?
At
this point... fish fingers, potato smilies and beans. And I ain’t sorry!
What
do you do with your evening (5-8pm)?
P
and I don’t agree on many shows, but tonight she’s curled up on the bottom of
my bed watching one of her shows and I’m scrolling social media.
Goodnight!
Do you have a 'get-ready-for-bed' routine? If so, what is it?
It’s
a little mixed up in its order, from how it was before I got poorly. My carers
get me cleaned up and changed before I eat my tea, then after my tea I do my
night skin care routine. After that its chill, meds and read. With P going up
to bed- not before we do our secret handshake!- sometime after she sorts my
meds.
What
time do you go to sleep?
Usually
around 11ish.
Is
this when you want to go to bed? Or is it influenced by what you're doing the
following day?
I’m
literally in bed all day, haha. But in terms of sleep, I’m not bothered. I do
wish I could have a lay-in some days though, because even on the weekends the
carers arrive at the same time. And if I did, maybe the night before I’d go to
sleep later.
Do
you share your bed?
I
wish!
Which
position do you tend to sleep in? e.g. foetus, starfish etc.
I’m
in the same position 24/7. My legs are crossed like a kid on a carpet at school,
then I’m laid on my back. I have a V pillow behind my head, a regular pillow
under each knee to support them and I have the ‘knee break' on my bed up as far
as it will go. My muscles in my lower half are so tense and contracted that
they can’t be moved, even by somebody else.
Reflection
What was your favourite part of your day?
Right
now, P curled up on my bed
What
was your least favourite?
Finding
out that I most likely won’t know anything about my respite care placement
until Monday at the earliest.
Did
anything happen today that you'd like to change or re-do?
No.
If I’ve learnt anything in my 9 months in bed, it’s that tomorrow has the
opportunity to give me space to make up for any lackings today.
Did
you 'learn' anything today? (use your own definition of this word to answer the
question)
Various
details about characters on one of P's shows. Tbh I’d have survived without
this knowledge, but it’s only fair after all I’ve made her learn about Teen Mom
OG/2/Y+P
Are
you looking forward to tomorrow?
I’m
ambivalent at best.
What
do you have planned?
Absolutely
nothing any different from any other day of my life.
You can read Bex’s journey & donate on her Go Fund Me page here
& follow her Instagram here