I thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.
Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.
To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page.
Reality update: Shopping (if you can call it that).
Finally, without having to worry about capacity for work, Theo and I were able to head to the city for some much-needed essential shopping. Cushion in hand for a pitt stop breki we then headed to Hill of Content so I could see my book in store.
From there the day was basically us walking slowly, me only holding my phone, Theo gathering the essentials we were buying and slowly looking like Santa whilst I played the butterfly next to him, leaning against every counter I could find.
We stopped for lunch at 1ish (so that’s 3 hours up time) and the pain levels were roaring. They subsided with the calming effects of bread on butter and a glass of wine (and my sitting on my leg to avoid being on my coccyx). By the end of our lunch the timer was ON. I still needed some sneakers. Lucky to find some quickly and do the ‘trying on’ activity at the end of the day, the pain levels headed for the roof.
A short drive home and I collapsed for 2 hours asleep on the couch. Here are the finer details:
- I don’t hold, lift, move, shift, anything other than my phone the whole time,
- I lean on Theo as much as I can, take his arm etc,
- Theo ran ahead often to buy something we needed ‘quickly’ to save my capacity and keep us moving so we could get lunch in,
- Theo ran back to the car to dump our goods and save the capacity,
- We bought two pairs of sneakers as shoes are hellish to work out now and I can’t risk having to go back shopping again, or finding the right pair and them being discontinued,
- Saved time by avoiding heavy kitchen accessories, high shoe section and also the handbag section (there’s no point even considering these items),
- Bought an iron… for Theo,
- Stopped for a champagne on high stools in Myer,
- Pitt stop and rest on the toilet (best seat in the city!) much to the dismay of the few people in the queue who must have wondered what the hell I was doing. For this reason I often want to use the disabled toilet – is that right or wrong?
- Came home, Theo unpacks everything, Theo puts everything away, I managed nothing,
- Toilet function/signals stop working properly (this started from Xmas day and will continue as long as I’m in this activity level). Don’t even ask about sexual function…
After the big sleep an unexpected dinner for a cousin visiting from Cyprus was organised on Lygon St. Theo and I would normally have walked from our place (pre injury), sadly not an option now. I made it through the dinner with the implant’s help and by sitting at the end of the table so I wouldn’t have to turn my head all the time. I chose to attend this dinner and avoid one organised for Sunday at a much further distance, and also consider prep for NYE and a Monday local lunch.
This time of year is rest, repair, prepare, out, rest, repair, prepare, out… and although it’s so lovely to see everyone all I can think of is ‘leave me in my sanctuary space, with the routine I’ve learned so I can avoid the excruciating pain levels and awful malfunctions that come with this hellish issue’.
I have two days to recoup now before Monday lunch and NYE dinner and then thankfully, I can write off as ‘survived’ the Festive Season with PN… if that’s what one can call this. My recoup and successful coping strategies are all thanks to the wonderful man in the picture, Theo my husband, who packed us up and prepped us for a lay down in a local park today. In true Theo form, he aims for nothing but the best and we ended up having his frappe in the park!(Left: insole in my new sneakers Right: Zephyr, Theo and our frappe!)