If you’ve been hanging out here for a while, you may remember that last year I made a post about what it’s really like to be in full-time rehabilitation. I wanted to make a follow up to this, as a few things in my life have changed, and I’m not sure if I would consider myself to be in ‘full-time’ rehabilitation anymore. However, my recovery does still take up a significant amount of my time, and I really struggle to keep up with my treatments whilst balancing the other things in my life that are important to me.
Unfortunately, there is still a stereotype that when we are not working (or only working limited hours) due to chronic illness or disability, that we are simply sitting around the house watching Netflix. In my opinion, we we are bloody well entitled to the occasional Netflix binge given everything we go through, BUT, this is simply not an accurate representation of most of our lives.
This post is based on a week in my life in early January, which I thought was a good example of what an ‘average’ week looks like for me these days. I think it shows the difficulty that I still have balancing medical admin, medical appointments, home recovery exercises, my desire to still connect with loved ones, and to make gentle progress towards a future career in writing. I have not included as much information in this follow up post about the things that are a part of my daily routine (such as my commutes), or how I ration my energy out with short rests. If you’re interested in this, please look at the original post. I also have another article on the horizon which is going to be dedicated to energy management strategies, so keep your eyes open for that too!
Wake up with viciously inflamed sinuses and a full body rash for no apparent reason.
Follow up on a missed call from ophthalmology clinic, only to find out the doctor has COVID. Re-schedule with the only other available practitioner for two weeks time.
Put the finishing touches on the Wishbone Words January newsletter.
Double physiotherapy appointment to work on pelvic floor and bladder. Ask the therapist about registering the sessions under my new status as a chronic disease patient in 2022.
Help a Francophone friend with their homework to analyse an English language article about research into play-based learning strategies for children – very interesting but tiring!
Wake up early for the technician who is coming to check the boiler; make no apologies for being in pyjamas!
Complete jaw exercises.
Clean ring splints – a long overdue task!
Receive email stating that my public health insurance coverage has been paused – have a minor episode of existential panic but then resolve to call them later in the week.
Titres-Services worker arrives to help with the deep cleaning tasks that I can no longer do.
Start work on first blogpost for 2022 about The Hidden Costs of Chronic Illness and Disability.
Pilates class for hypermobile humans via zoom with Joyful Fitness Pilates.
Complete (other) jaw exercises with cork.
Take photos for upcoming Instagram content and write captions.
Do a skype call with a friend in Australia so we can commiserate about our poor reactions to the third COVID booster!
GP appointment to discuss my transition onto a new migraine preventative and raise concerns about my elevated pain levels after the third COVID booster – which still haven’t improved after 5 weeks! Discuss which natural supplements I can add to regime for pain and fatigue without destroying my liver.
Gentle cycling session – my first one back after a recent flare up!
Plan meals and order groceries for the following week, doing my best to follow my new diet plan for possible MCAS.
Complete physiotherapy joint stabilisation exercises.
Call public health insurance fund multiple times but be unable to get through due to the volume of calls, decide to send an email instead.
Double physiotherapy appointment to work on jaw hypermobility and tendonitis in knee.
Wake up damn exhausted and have a short cry 🙁
Try calling health insurance again. Still not able to get through, but eventually able to make a virtual appointment for the following week via email.
Finish the main blogpost for January and reflect on how best to promote it.
Do a progress check-in for the January Patreon benefits.
Pain psychology appointment. Starting a new course of pain hypnotherapy in the hopes that it will help with migraines and general neuropathic pain levels.
Practise exercises from the pelvic floor therapist.
Put the laundry on and change the sheets and towels.
Complete jaw exercises.
Re-fill pillboxes for the following week and make note of what needs to be re-purchased from the pharmacy on Monday. Realise that with the addition of the new supplements, I need to upgrade to a bigger pill organising kit!
Wrestle the cat with Haydn’s help so that we can trim her claws.
Cycling session – still taking it slow to protect the knee!
Wash hair but quickly give up on the prospect of blow-drying it, decide to give myself a nice manicure instead 🙂
Some light brainstorming and administration for the blog.
Watch a movie at home with Haydn.
Planning session for next week (appointments, admin, exercises etc.), decide what my top priorities should be for the days that I have limited energy.
Physiotherapy joint stabilisation exercises.
Practise pelvic floor therapy exercises.
Woo! I don’t know about you but I’m pretty tired just reading this back, maybe I AM still in full-time rehabilitation…
Did you see some of your own life with chronic illness reflected in this post? Why not send it to any friends or family members who are struggling to understand all of the physical and emotional labour that we go through? You can use it as a jumping off point to tell them about the things that you have to balance in your own life!
Before you go…
If you would like to help support my continued efforts in running Delicate Little Petal, as well as volunteering for Wishbone Words and Healp.co during my recovery, please consider supporting me on Patreon. Pledges start at just 3€ and perks include fun merch, custom poetry and behind-the-scenes content! I am also working towards adding a monthly meetup/Q&A feature for my supporters.Become a Patron!