My brain is trying to convince me that we were run over by a tractor last night. It does certainly feel that way so maybe Mr Brain is onto something.
I am realising now that my baking adventures were a luxury; a one off. THIS is the norm.
I keep meaning to do ‘A day in the life’ post but when you’re poorly with a condition like ours, the mere task of keeping a diary is exhausting and can lead to a crash.
This has taken me months to compile.
A friend asked me, back in October, what I do everyday and I struggled to answer. What do I do everyday?
People are always surprised to hear that I don’t watch a lot of television. I can’t usually read a book or listen to music and when I do it exacerbates my symptoms. I can use my laptop/iPad nearly everyday in intervals though and for this I am so thankful. It means I get to ‘see’ my friends everyday because they now live in my computer. I explained to this friend that I do a lot of ‘sitting’. I do an awful lot of sitting and by this I mean just sitting and looking out of the window, or looking around the room. Exciting stuff.
When reading this please try to think how you would feel if you were spending the day with the worst hangover you’ve ever had, plus you’ve got the flu and you ran a long distance race yesterday and you’re sore after that. (No, I am not exaggerating! It may not always look or seem like it but we really do feel like that and much, much worse!) We do not lead lives of luxury or leisure. Everyday is a battle. When I go about my day I am feeling poorly at every second of every minute of every hour.
WARNING: continuing to read this post may cause extreme boredom. The author accepts no responsibility for readers losing the will the live after reading what is written below.
‘An average GOOD day in the life of Anna Jones’
10:00 Awake (no alarm because it can send me into ‘shock’)
10:30 Out of bed. Carry my ‘day bag’ downstairs with everything I need for the day. Make myself a drink and then sit on sofa, with legs up, and rest. Take my tablets.
10:50 iPad. Check emails, messages, social media
11:00 iPad off. Sit and rest
11:10 Make myself a cup of coffee
11.25 iPad off. Purple time.
11.30 Have something to eat. (On ‘good’ days like this I can make my own toast.) TV on. Watch Friends (because it’ll never get old despite re-watching every episode hundreds times)
12.00 TV off. Sit and rest (my legs are always up to help improve circulation.) Look out window.
12.15 iPad. Social media, online support groups
12.30 Mum home from work. iPad off. Chat with Mum
12.35 Sit and rest
12.45 Shower and brush my teeth
12.55 Upstairs to bedroom (I used to have all my clothes downstairs but have improved enough to be able to change in my bedroom.) Rest on bed after shower
13.00 Get changed into clothes not pyjamas. Brush hair (and blow-dry it if I’m feeling particularly energetic.)
13.05 Rest after getting changed or have purple time
13.10 Downstairs. Purple time after exertion of showering
13.20 iPad. Social media. Chat with Mum. Reply to text messages
14.00 Go for my drive. Usually up to the next village or through town
14:15 Sit and rest/purple time after drive
14:25 Make myself a drink. Have something to eat (usually not able to make something for myself.) Spend afternoon alternating between being on iPad or just sitting or watching television.
16:30 Dad home from work. iPad off. Chat. Alternate between iPad, TV and sitting
17:45 Brother home form work. TV on
18:00 Meal (usually on a tray as I struggle with sitting at a table, never made by me!)
20:00 Go upstairs equipped with ‘day bag’ and drinks (that someone might have to carry for me.)
Rest on my sofa or on bed. Might put some clothes away (I am now usually able to do this myself.) Might listen to music while I potter around my room if I’m well enough to
20:30 Take evening tablets. Pyjamas on. Lights on dim (sleep hygiene.) DVD with warm drink (usually from my flask so I don’t spill it on the way upstairs!)
22:30 Brush teeth. Depending on how ‘sleep tired’ I am, either try to sleep, try to read a little bit or watch another DVD (usually something aimed at children or the simple-minded!)
If all goes to plan I will be asleep by midnight.
So there you have it. Exciting stuff huh? And that was me describing a ‘good’ day. Things used to be, and still sometimes are, much worse.