Wednesday, 8 April 2020

24HRS WITH... BEX HUGHES, FND SUFFERER


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