my big sick.

I know that I’m sick.

So does my family.

So do my friends.

So do all of you.

I write about it. I take steps to deal with it. I’ve had to give up my work because of it. I’m having to regrow my hair due to it.

However, in the past two years  it has really progressed to the point that I am a much more “chronically ill patient” than I’ve been willing to accept in my day to day life at times – though I’ve been getting better about it – and I realized that this weekend.

Here’s what I mean:

When we were at our parents on Saturday visiting, as we were watching the end of the football game, I started to get REALLY hot. My internal thermostat doesn’t work very well, it was about 90 degrees out and humid, and my prednisone makes me melt, so flashes are not that unusual – but this one was BAD. I started to feel faint even.

However, rather than express that, I didn’t want to worry anyone with an “episode” – they look more scary than they are dangerous and I know my family already worries about me – so I stood under a vent and tried to cool off – unsuccessfully.

And, of course, I ended up having to go get sick before we left.

Once I was in the car, with the AC blasting on my neck for awhile, I checked my blood sugar and it was 90 – not very long after a full Mom meal – so I had been overheating while my blood sugar was dropping.

Ahhhhhhh! Mystery solved.

And what should I have done?

Checked my blood sugar when I started feeling bad, eaten a snack, put a bag of frozen peas on my neck, and laid down until I felt better – scary looking or not (and I will next time, Mom, I promise).

This episode got me thinking that it is time to just really do things I need to do to be prepared for the problems I encounter – to accept them, to address them – and to just learn to live with the fact that I will – publicly – be a sick person. That’s just my reality.

So:

  • I am now leaving my medical alert bracelet on at all times. It’s waterproof and there is no reason for me to decide if I “need” to wear it today. I always need to wear it.
  • I already carry my glucometer and check my blood sugar on a schedule but I am going to teach my daughter to use it as well in case I get into trouble when we are together.
  • I asked for a folding mini-cane to keep in my bag for Christmas. I’ve known I needed one for awhile – because some short outings don’t call for a smart chair but sometimes balance and hip issues flare up suddenly. I’ve realized it’s time.
  • I’m going to put myself on an eating schedule – where I have a protein snack every three hours or so when I’m awake and as soon as I wake up (after blood sugar check) – and keep one in my bag as well.
  • I’m going to make sure I have my “sick day kit” at home ready to go and all of my medical supplies I need for outings at all times. More on that in a bit.

I am also adding these guys to my keys and my bag for the rare occasion I’m out alone (though that doesn’t happen often – understandably, my husband REALLY prefers me to travel with company):

And, as I take SO many medications and supplements that some of my afternoon and evening supplements were getting lost in the shuffle, I finally broke down and ordered this guy:

Honestly, at 39, getting my pill organizer from “Stuff Seniors Need” was not my favorite thing. hrmm.

Also, honestly, I am going to stop describing my current symptoms as a “flare” – because they aren’t. They are my baseline. My rheumatologist acknowledged that at my last visit as well. They aren’t going anywhere and I need to just work with that reality.

So, I’ve been thinking – and reading – and realized that we spoonies really do need to have a “Sick Day Kit” of sorts for days when we are just too sick to function. Unfortunately, they can come without warning.

Here’s what I’m including close to my bed as a starting point:

  • my giant med case when it arrives
  • my prn meds for pain, nausea, etc.
  • essential oils – Valor for anxiety and Copiaba for pain
  • compression socks – I have blood flow issues in my legs and it’s time to get with the program
  • my glucometer – my blood sugar drops without warning, as I mentioned before (yuck, I say).
  • protein snacks – I keep them in my bedroom now.
  • fizzy water and kombucha – I am fortunate to have mini-fridge in our bedroom for puny days as my broken feet and hip don’t travel well.
  • fuzzy blankets because duh. =D
  • two fans – I overheat pretty often too.
  • baby wipes – The overheating comes with lots of sweats. More yuck I say.
  • lip balm and eye drops – All of the meds and the autoimmune issues bring dry eyes and lips.

That’s all that has come to mind so far. I am definitely open to suggestions!

And for my “on the go” kit in my bag:

  • a pill case with my meds I need when I’m out (prns, metformin, etc)
  • antibacterial hand gel – RA meds = suppressed immune system
  • a full water bottle. I am always thirsty. Yay, meds!
  • the travel cane will live there soon
  • my glucometer – always
  • protein snacks
  • lip balm and eye drops – I think I may be part lizard. =D
  • Valor EO for anxiety

And, of course, no matter where I am, Henry the Wonderpup is with me. =D

Another thing I recently realized I need to be more aware of is carrying my handicapped parking hanger with me when I am travelling with friends. It is still very much needed, even when i am not in my own vehicle.

I hope this is helpful to my fellow spoonies, to also be prepared. Though it is not fun, we really have to be.

Since I became “more disabled” for lack of a better way of saying it, I have realized how much of the world is still not terribly accessible. There are many challenges when I use my smartchair and we also face such difficulty dealing with invisible illnesses and symptoms that manifest abruptly that many people are uncomfortable with and don’t know how to handle. It’s best to be ready.

This spoonie life can be really tough sometimes – but we can all do this. #fightlikeagirl

On a brighter note, I am still working really hard on my AIP and weight loss program and lost two more pounds last week! I am excited to do more cooking and share more Paleo goodness this week.

In the meantime, be well, everybody!

Grace and Blessings.

 

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