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What It’s Like to Move Through Life as a Spoonie in a Time Capsule

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The only Christmas gift I asked for was to attend Christmas Eve Candlelight Service at our home church.

This was something I would not be able to do alone. Although I have had offers for transportation, the other preparations to be able to attend start early in the day. Starting with help in the shower, making sure I eat, take medication, get a nap, etc.

While I am sure some friends or family would be willing to help with “some” of these things, as many of us living with chronic conditions know, what works today may not work tomorrow.

These may sound like minimal things for someone that is healthy, but for someone with chronic illness, one thing can be the difference in symptoms. I can go an entire day and forget to eat or drink anything. If I don’t eat, I can’t take my medication, and then it starts a cycle.

When I get to see my friends and family, it doesn’t seem like a year has gone by, and nothing has changed. I have been trapped in my home for a year, like many before, with minimal human contact and leaving only for appointments, the store and a handful of events.

For instance, this week my husband took the week off. This allowed him to be home so he could play a more active role as my caretaker.

When we pulled into the church parking lot like we did so many times before, it just seemed like we had left for a week vacation and were returning.

Not much changed for me.

Yes, I have had some life changes, but this is still home. The people are still my family, I still love them and to me nothing changed. My heart still feels the same as it did the last time I was there.

For them though, life has changed.

At church they have new members. New relationships with people who do not know you. In friendship circles you find your friends still go do things together and have memories that don’t involve you. Old coworkers have water cooler conversations you have no idea the punchline to. In the family tree, family members have grown closer to each other where you once were a link to the chain.

Your children have moved forward in their lives, and you seemed to have lost time. Even your spouse or significant other has had relationships bloom that you are not apart of.

It feels like time stood still for you, as if you were in a time capsule and the world moved on.

Chronic illness can steal more than just your body.

There are a few things I believe we can all do.

As a spoonie, say “yes” to help. I have a hard time here because often I feel “help” ends up being more work. Please tell me I am not alone. I had to start telling myself that people offer because they love me. For a long time, I didn’t have anyone to offer this help so why would I not accept it?

The other part is if you’re reading this and you do offer to help someone, know what you’re offering. It’s so amazing to have friends offer to help, but it really does put me in a weird situation.

There usually isn’t a face to face conversation to discuss what the help entails. It is normally a text or a social media conversation, and that doesn’t leave much room for personal detailed information. For example, when offering a ride, ask them what is a ideal time that you could give them a ride.

If you say “call me anytime,” do you really mean anytime? Many spoonies may be up all night for one reason or another.

The point is, when offering help, be specific in what kind of help you can give. As a spoonie, we sometimes don’t know what we need. Saying “let me know if I can do anything” is hard for both parties. If the offer is, “I can run to the store for you,” then say that.

I want to thank each person who ever has helped me in some way, but also any spoonie. We understand the nature of our chronic illness can be frustrating with restrictions and rules. We live it every day with no choice. You helping out by making us dinner or giving us a ride says we mean enough to you to look past them.

With us saying “yes” to your offer, we both are depositing into our relationship, and isn’t that the most important thing?

How can you as a spoonie say yes to help? How as a friend or family member can you help a spoonie?

Getty image via MangoStar_Studio.

Originally published: January 16, 2020
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