As the quarantine began in my state some days ago now, I’ve noticed an increase each day in the “I’m bored” posts. The “what do I do” posts. The “I need to see people” posts.

Just the general stir-crazy posts.

It didn’t take very many days – and I’m not without sympathy.

Some of these friends are total extroverts and very active people and they were caught completely off guard by this – as were we all – and they really are just kind of lost – again, as are we all.

Still, I want to take a minute to echo what many of my spoonie sisters are saying. . .

This – and many of the other unpleasant things people are experiencing right now – are part of our reality MUCH of the time.

When it comes to specifics, there are several things I’ve noticed.

Involuntary Downtime

Looking back over the past eight months – since my first surgery for osteomyelitis on my left foot – it would be reasonable to say that I have spent at least seven of them more or less in my “spot” due to surgical recovery, RA issues, or the nasty CRPS flare and spread I experienced last Fall.

I am blessed in that I can – sometimes – get out and about despite my health issues – but, even when I am doing pretty well, I usually pay for one day of going with several of resting and recovering. This is just my reality.

This is life for many spoonies. We are well-versed in spending not just days, but weeks – and sometimes much longer, at home, sick.

We can do these days standing on our heads.

We’ve just had lots of practice.

Supply Panic

We’ve all seen the panic in grocery stores over certain items – toilet paper, for the love! – and probably searched for particular items for our families.

As a spoonie, this is not new territory for me, keeping up with and tracking down necessary medications and medical supplies when they are in short supply or my pharmacy has run out or any number of other things have gone awry.

One thing that is concerning me is the developing hydroxychoroquine – also known as Plaquenil – shortage – that I knew would be an issue as soon as I read that it was being used to treat COVID-19.

If you aren’t familiar, Plaquinil is an older malaria drug that is also used to treat many autoimmune conditions like Lupus and RA. I have been on it for six years – and we have experienced shortages of this drug under everyday ordinary circumstances.

Of course, I want people to have what they need for COVID-19 treatment. OF. COURSE.

It’s just that I also very much need this drug. So I pray that these shortages are addressed and there is enough to go around.

It’s a frightening situation – and yet another case of scrambling to get what is needed for our health.

Facing Fear And Uncertainty 

Many healthy people are, for the first time perhaps, facing a sense of uncertainty when it comes to their health. This virus is terrifying- and there is no way to know who is a carrier and the news just keeps getting more scary.

This is how each day can feel as a spoonie: there is no way to know from one day to the next what our bodies are going to do or how they are going to react to things.

I literally woke up from a nap at 11pm one night and my CRPS had developed in my left foot.

It happened that fast, out of nowhere.

So health uncertainty is nothing new at all – a daily reality – though this virus has certainly made things more complicated for us all.

Choosing To See Light And Hold On

In looking at this horrific virus situation, there are so many terrible things we cannot control. It’s so easy to be overwhelmed by negative feelings: anger, despair, grief, fear.

The same is true of living with autoimmune disease.

In my case, I had to give my work as a nurse, I live with tremendous pain and loss of mobility, and I am constantly facing new symptoms and diagnosis.

It is a tough path to walk some days.

However, I can choose to focus on the negative things I cannot control or I can choose to see that. . .

• Since I spend most of my time at home now, my amazing husband has turned our house into the most cozy hippie hut and I so love time spent comfy at home with my family. ❤
• Because I’ve been home, our sweet Sara has been able to participate in home-schooling through a public school program in our state – which she loves  and would not have been able to do if I still worked.
• While I do miss nursing, I love writing and am blessed to spend my days reading and writing now.
• Our precious weenie dog, Henry, has gotten terribly ill a few times and has needed constant care and I have been able to be with him. A true blessing.

There are so many other things as well.

As many people have been home during this, I have seen so many pictures of family time and games and cooking and all sorts of things that people normally just don’t have time for. Though it doesn’t change the awful circumstances we are facing, it is a silver lining.

Not A Pollyanna Response

Still, as I said, the silver linings DON”T change the circumstances we are facing.

I’ve been praying, reading my bible, using all the valor, diffusing all the oils, reading all the books, taking all the deep breaths, educating myself, sheltering in place with my family. . .

And I’m still scared as hell.

And it’s okay to say that.

It’s okay to feel however you feel about this insane crisis we find ourselves in.

Grieved, scared, angry, lonely, trapped, panicked, exhausted. . . whatever you feel is okay to express – and you don’t have jump on the Insta “we’re using this time for crafts n’ cookies so it’s all okay” bandwagon.

Vent.

Say how you feel.

You are not alone.

Your spoonie friends will totally understand.

Be well, everybody. Take care of yourselves and each other.

Grace and Blessings.