A Day In The Life of a Newly Ill Person

* 6am: Wake up  Realise you hurt but you can’t take your pain meds yet or they’ll wear off too soon. Put on Radio 4 Today programme. Browse Twitter. Go back to sleep around 7.00am

* Between 8/9am: Wake up again, . Vision is fuzzy, whole being is fuzzy. Realise that your pain receptors are waking up and lie in bed awaiting inevitable.

* Between 9/10am: Get out of bed  Realise getting up this late makes you dirty scrounger, decide to open living room curtains to show neighbours that you are up, even if you and husband still can’t get out of PJs or bed.

* Make breakfast. Make coffee. Take meds. Do all of this before pain truly kicks in because you have to eat and if you don’t do it now you never will.

* Switch on computer at desk, as sitting at desk makes you feel productive and like you’re achieving something. Plus you can only sit at desk during your most awake/pain-free hours of the day, which is now. Browse Twitter, read blog posts, work on bits of work you’re doing. Feel accomplished. Feel intellectual. Feel like you’re fighting against benefit scrounger rhetoric!

* Feel slightly less accomplished when you realise that, in a Before Illness (BI) world this was your least productive time of day as you are not a morning person. Reflect on how your perception of “productivity” has shifted. Realise you haven’t showered since last week and haven’t changed your pyjamas in three days. Reflect on how your perception of “cleanliness” has shifted. Drink more coffee.

* Noon: Realise fatigue is kicking in. Realise it just took you five attempts to type “realise”. Realise your legs/arms/back are starting to hurt. Realise that you’re now sitting at your desk in a slightly sideways slumpy way. Moan about the fact you can only take your medication twice a day and you’re not allowed any until dinner time. Grumble.

* 1pm: move laptop to sofa/bed as you can now no longer sit up in chair due to pain. Have maybe another half an hour on computer before your brain goes “nope, not happening”. Realise your fatigue is too much for reading/watching tv/doing anything except lying down in a darkened room. Put on audiobook to entertain brain. Think about how upset some people would be that you are on benefits yet have iPad to play audiobook on, despite iPad being gift and obtained BI (before illness). Decide you must actually be dirty scrounger after all.

* Approx 3 mins later: turn off highbrow political audiobook you were listening to under guise of being intellectual, put on audiobook of The Fault In Our Stars instead as it requires less concentration.

* 4pm: Open eyes. Realise you’ve been asleep. Blink for a while as you work out what day it is/what room you’re in/own name. Realise it’s the afternoon. Head feels full of cotton wool. Get annoyed at having slept as it now means you won’t sleep later.

* Attempt to use computer. Brain fog too high. Have moment of wonderment as you remember this used to be one of your most productive times of day and wonder how you used to be able to work. Struggle remembering what your job was. Wonder if this is what government means by “work-shy”. Decide to continue marathon of The West Wing on aforementioned iPad. Realise how this piece of equipment is essential to your continuing sanity. Realise how many people would prefer you sell it for money as not allowed nice things because benefit scrounger.

* 5pm: Remember that you should probably eat and that you forgot/slept through lunch. Consider food choices. Realise energy levels mean any food that involves getting out of bed is too much effort. Consider fact Social Services do not feel you qualify for Adult Social Care, despite not being able to make own dinner.

* 6pm: After repeated poking from husband, concede that you should probably eat something. Walk into kitchen. Admire cleanliness of kitchen, give thanks for awesome people prepared to come over and do things like clean kitchen. Prepare microwave meal, feel very accomplished. Wonder if it’s going to be time for bed soon. Realise pain levels are going up again. Take painkillers. Laugh at futility of taking painkillers as you know they won’t do anything.

* 7pm: Rationalise that it’s perfectly acceptable to call 7pm “bedtime”. Sudden realisation that you’ve been in bed since 1pm anyway so point is moot. Have moment of reflection that in BI times you’d be running youth work sessions for groups of young people about now. Compare to self not being able to make own dinner PI (post-illness). Go back to watching The West Wing.

* 9pm: Switch off West Wing, turn on audiobook. Set sleep timer for 1 hour.

* 10pm: Audiobook switches off. Switch back on and set sleep timer for 1 hour.

* 11pm: Audiobook switches off. Switch back on and set sleep timer for 1 hour.

* Midnight: Audiobook switches…oh you get the idea. Think on irony of being exhausted all day yet unable to sleep

* Some unknown point: Fall asleep in a dribbly way, audiobook still playing. Wait for cat to wake you up in a few hours.

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5 Comments on “A Day In The Life of a Newly Ill Person”

  1. kdub155 says:

    Though I do not know the specifics of your situation, I would not call you a “benefit scrounger,” despite your Ipad bought BI. People who view social assistance and its candidates in such a way do not understand the immobalizing reality of illness. Best of luck and take care.

  2. AdamTilted says:

    It’s like you’ve been reading my diary

  3. hahaha I know this soooo well. I sit upright staring at the TV but im asleep behind my eyes! I also watch the news three times a day to stay up to date with the outside world. I then forget what I heard and make up the news.. its more interesting that way anyway! As for insomnia, brain crazy… hahahaha… most nights!

  4. I identify with so much of what you write here. If I stay in bed past nine o’clock or switch on the TV during the day I feel like I’m proving right all the people who assume I’m choosing not to work and enjoying a long holiday at the expense of the tax payer. Its ridiculous to feel this way – I know my illness is real even if they don’t and they have no idea how I spend my day whatever I do – but when you hear phrases like ‘scrounger’ or ‘skiver’ every time you switch on the TV it’s kinda hard not to let some of it sink in.


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