spoonie confessions and adventure preparations.

Okay, first, a spoonie “confession” of sorts: the past three weeks have been, in some ways, the worst CRPS flare I have had to date. They have been rough.

And I have truly downplayed, minimized, understated the severity of the situation in some ways. Why? I think both because I didn’t want to believe it was as bad as it has been – as that could mean worsening CRPS – and because I’ve tried to write less about illness related things as no spoonie wants to be seen as a complainer.

But – This. Has. Been. Bad.

henry and i have done lots of this over the past several weeks.

For a time, every day that I thought it was improving brought another day where it seemed to be MUCH worse. While the primary issue is severe pain in my left foot and burning – where it feels like it has literally been lit on fire – with an inability to hold weight, there are also plenty of systemic symptoms as well such as migraines and balance issues:

they tend to occur without warning and pain medication is of little to no help.

As I write, while it isn’t resolved, the flare is finally much improved from where it was – and I am so incredibly grateful.

my sweet sarabug and i have eaten many a daiya gluten free, dairy free cheesecake while watching movies in my bed through this. i am so thankful for her.

While living with the RA is certainly difficult, this CRPS is just a different beast entirely – and it can be terrifying.

Adding to it, I’ve had some stress with family members and disapproval over my life choices and decisions for my family and honestly having to chose to just live out loud and not worry about that – even when it’s hard. I have said several times in conversation that I think a switch flips when you turn 40 and you decide you really have to LIVE and not worry about what other people think – even when it’s tough – and then I saw this from Brene’ Brown:

So, the CRPS flare and added stress for the past several weeks have not been a great time.

However, the only way to deal with those things is to just keep living – and I do. I write and read and make plans and do my very best to enjoy my life no matter what the beast is up to.

In fact, as I’ve said before, it’s sooo important for my mental health to keep amazing adventures to look forward to on my calendar and just plan to go, whether I’m walking or in need of cane, walker, or smartchair.

As such, my Ginny, my dearest friend of 25 years, godmother to my bunch, and truly my sister really, and I have had a super fabulous adventure planned that we have been trying to take for several years abroad – and it is finally here. I am crazy excited.

Of course, we will be travelling, smartchair in tow, but onward, I say!

I have been getting ready to go over the past few days. Sara and I – and Henry, of course 😉 – went and got ourselves beautified by my friend, Brook, who is just the BEST stylist: