Another weekend and so another opportunity to wrap two days together and take the blogging life a little easier.
This weekend was characterised by weakness. Don’t be alarmed. It was a cold…and Sean was suffering with me. I find that things like this hit me a little harder than they might have otherwise done prior to the stroke. I think this is in part due to not being able to take some over-the-counter cold and flu meds which are contraindicated with my stroke meds.
We took time today despite our ill-health to revive one of our Sunday traditions. Most Sundays we would go to Mass which would be followed by a morning tea in the same hall where we have Mass. Then our little family would saunter off to the local shopping centre whereupon we would go to our regular café. Neither the food nor the coffee is particularly outstanding but it does feature a small enclosed playground for children under 6 which allows us to eat in peace while Snugglepot plays in safety right beside us. She’s entertained and we can take the parental attention level down a notch or two. After the passable lunch, we’d then drop her off to Småland (IKEA’s supervised playground) which she loves and then we have a wander around IKEA dreaming and chatting as if we had not a care in the world.
Today’s outing was a modified version of that. There was no cuppa after Mass so we went straight to the shops. We aren’t in a position to buy café lunches and it was a little early for that anyway so we went straight to Småland which delighted Snugglepot no end! We took our usual stroll…well, Sean strolled as he pushed me in the wheelchair. We were our own selves again.
Reconnecting with our silly little tradition was actually really meaningful for me. It was a little bit about getting out of the house but so much more about doing something that was part of our family’s routine. It was as if I’d found myself again…somewhere around Department 14 – Home Organisation.
Friends and regular followers will know I’m not a great reader. I used to read voraciously as a child and into my mid-20s but only patchy attempts thereafter. Becoming a librarian actually pretty much shut down my desire to read for pleasure. I had to read articles from medical, nursing and allied health journals. It hardly makes for a relaxing read.
So, I became adept at reading quickly, efficiently digesting the methodology and findings of the research being carried out.
This was coupled with a home life and extra-curricula activities which weren’t conducive to my previous reading patterns. Instead of going to bed at a reasonable hour and curling up with a good book, I’d stay up late watching TV and then I’d head to my computer at about 1am to work on whatever music coordination stuff needed to be done.
I’m now returning to my long-abandoned habits and picking up a book again. I have a little collection of Penguin Classics. This week’s choice is Jane Eyre.
I didn’t blog yesterday. I nearly didn’t today either. I’m a little stuck in my thoughts. I’m trying very hard not to be overcome by my circumstances. Sometimes I lose that battle for a little while. I think that happened to me this week.
I try really hard to be positive and celebrate my successes. There are many things I can be grateful for. Every single day I find at least one thing to thank God for…it’s actually part of our family evening prayer. So I’m not devoid of hope or gratitude. It’s more that the worries and pressures of this new life just get to me.
I didn’t choose this. It was not something that happened to me due to recklessness or a lack of caring for myself. It was not something that happened as part of the ageing process. I say this because these are some of the things that people say to me when I tell them I’ve had a stroke. “Oh, you’re too young!” “You need to take care of yourself.” Or my least favourite and a decidedly unfunny attempt at bringing humour to a dark event, “Some people will do anything for attention!” (followed by half-hearted laughter). I’m not laughing. I do the stroke jokes here.
I’m still angry. I’m still processing. If there’s a joke to be made about this, I’ll be the one to deliver it and it will be when I’m good and ready. That’s not yet. <I almost considered a “check your privilege” thing here.>
To lighten the tone of this post (because I can feel the anger and frustration rising in me), I’ll end this soon. I just wanted to say that I had some good things happen today:
- Got permission from physio to play keyboard again (after having to stop due to torticollis).
- Discussed with my occupational therapist what a possible return to work might look like.
- Got an offer of help from a beautiful friend.
- Had a wonderful conversation with my sister-in-law.
Now I am going to leave you with a #strokejoke that I remember making while I was actually still in hospital…
Sean had taken me out for our evening stroll/wheel around the garden near the rehab unit. It is an immaculate rose garden and the perfume of the flowers in the evening and spending time with him there was the highlight of my day. This one evening we both took a deep sniff and then looked quizzically at each other. The smell of roses was replaced by something a little more pungent. The questioning look on his face was a comfort to me and I asked “So you can smell that too?” He replied, “Yes.” “Good,” I said, “because I’m smelling burnt toast and I just wanted to be sure I’m not having another stroke!”
BTW…it was 10 weeks ago today since it happened.
So I was all good yesterday after the bath…until about 10 minutes after the bath. I was dried and dressed and went to lie down but had wet hair so I put a towel down. I turned my head to the right a little too quickly and -BANG!- the improvement in my torticollis was set back by about a week.
I’ve spent today in pain and discomfort. I’d find a comfortable position and forget that I have a problem only to be reminded with a sharp burst of pain to the back of my skull that I shouldn’t have moved in that direction.
I think it’s going to be another night of painkillers for me. I don’t know what’s worse – pain or paralysis? Having had hefty doses of both recently, I’m almost thinking the latter.
My Facebook friends and Twitter followers will know that I have attempted to take a bath this afternoon. I’m not entirely sure how it will end for me as I’m actually dictating this into my phone from said bath!
There is apparently a knack to getting in and out of the bath when your limbs don’t work properly. I’m still working out how to use this body but I have done some research and think I know what I’m going to do when the time comes for me to get out. I have lots of towels nearby to dry myself and the bath surface before I attempt to get out.
Right now I am just enjoying the relaxation. I have my favourite bath music playing. Yes, I have bath music. I either play Deep Forest or Grace by Jeff Buckley. Today Jeff is my man.
I had a long lie down with my face out of the water. I could hear my heart beating through the water pressure on my ears, steady and rhythmic just like it should be. No racing. No missing a beat and then trying to catch up. I shaved my legs. I washed my hair. I could reach everything without straining. I could take my time.
Now I’m going to return to this bliss.
I decided to take it easy on myself and post just once for the weekend…essentially giving myself a day off blogging. Now the weekend is over in 45 minutes and I still haven’t posted! So, here’s my short wrap-up…
It’s been a week of ups and downs and the weekend was really no different. I have had moments of both joy and sadness, strength and weakness. I had one part where I felt someone had taken advantage of me but that was cancelled out by the generosity and thoughtfulness of a dear friend and kind soul.
Here are some of the highlights:
- Got a wheelchair
- Spent time with a good friend
- Played a game in the backyard with Sean and Snugglepot
- Sang at Mass (and didn’t feel exhausted at the end of it)
- Went for a walk/wheel on the waterfront
Those are some happy moments to give me a light in the darkness and a lift when I’m down.
Here’s hoping for a good week ahead.
I had yet another MRI today. No results yet, of course.
Not really feeling like blogging today. It’s been a pretty high-intensity week.
I’m just going to veg out for the day.
Normal brain – obviously not mine