My Lenten Journey

You may have noticed that I have been more prolific with my blog lately. There’s been a lot of updates and a lot on my mind lately.

First, I recently learned that it is FND Awareness Month and I do want to take some time out at some point to talk about my other little understood disease.

Second, there was a symposium that I took part of in Las Angeles that was awesome on levels, both because of the impact I made and also the things that I learned. I received excellent advice on places to find more help, which is just such wonderful news for someone who has been going it alone this entire time.

And then third is also the self-work and the personal journey that I decided to go on as a part of Lent. I have decided to talk about my lenten journey first.

Ever since I returned to work last year, I have been on this merry go round of trying out different routines only to find them all fall apart at some point.

I’m actually not even using my planner app anymore. I’m also still struggling with keeping myself fed.

I’ve tried so many different things and none of them fully work. I just feel like I never have enough time to take care of myself, to be with my friends and family, and to work.

I have puzzled and puzzled and puzzled on this. I’ve tried to come up with solution after solution. Eventually, I came to the conclusion that I needed other people to help me do some of the things in my life that I couldn’t manage because it just won’t all fit into the energy envelope that I have.

So, I began a quest for that help. But, it takes time and in the meantime, you’re just still floundering. And it just feels like the world is impatient and the world does not forgive you for not having enough of you to go around.

And then I started realizing that I need to give over certain parts of my job. That was really hard to accept because I put a lot of energy and work into many of the things that I have accomplished at my job.

So, the 1st thing that I thought is “I failed because I couldn’t do this.”

But I eventually realized that it doesn’t make me a failure if I can’t manage what would be hard for anyone, not just someone with limited time and energy to do. It’s okay to let some things go.

So, I finally reached a moment of acceptance, where I am ready to relinquish some things I was holding on to.

And that’s where my Lenten commitment started. I realized that I was being incredibly hard on myself and still trying to measure my worth and success by a version of myself that is gone.

I told myself that I wanted to find a way to honor myself as I am now. I knew it that it didn’t feel right that I was internalizing such negative thoughts about myself. I knew it didn’t feel right how little self-care I was putting into myself. But, I honestly was not even sure what I meant by “honoring myself.”

I knew something was wrong. But, I couldn’t fully define what it was. Plus, I definitely didn’t know how to make it right.

I mean, how can I carve out time for myself when I still have all the same responsibilities and no additional energy?

So, I spent a good part of my Lent trying to figure this out. I knew that I wanted to stop not taking care of myself. So, I finally went back to the hairdresser after 3 months. I also finally went to the optometrist- something that I had put off for years.

But, those steps honestly felt superficial. Because I was still spending a lot of time crying and calling myself useless because there’s always some client or some volunteer asking why you haven’t gotten back to them yet. There’s always someone there to tell you that you’re not doing good enough.

And I am taking in all of it. Then, one day after yet another crying jag, I started to remember what work was like when I was healthy.

I remembered still treading water trying to keep up. I remembered that is why I went into work early and started arriving at 6:30am. I remembered that many days, it was all that I could do to leave at a decent hour. I remembered that I opened my laptop at home and did another hour of emails at home. I picked at least 3 times a month to do “catch-up” work at times that I otherwise wouldn’t be working. And I was still treading water.

I was always going and going and going then. So, even with doing all of that work, there was still some time and energy left to carve out time for exercise, eating right, hair appointments, etc.

And I realized that the only reason that I am not still doing all of that is because I physically can’t anymore. That’s when I told myself that I wasn’t going to internalize other people’s standards of what is “good enough” and “not good enough” anymore.

But, that’s also easier said than done. Because the world still wants things done at its pace or it’s not good enough. The world will push back at your attempts to convince yourself that you are okay. That you are good enough. That you are worthy.

Instead, the world asks “how dare you try to feel good about yourself?”

Even before Lent, I had told myself that I was going to stop “looking down” at all the things that I didn’t finish in a day and instead start “looking up” at all that I did accomplish in a day.

But, that only lasted so long because the clamoring always seems to be there. The constant refrain of the world seems to be “Not good enough. Not good enough. Not good enough.”

So, now here I am at the end of Lent, wondering if I succeeded at all with what I set out to do.

And actually, I think I did. The world may still be trying to tell me that I am not enough. But, I am learning to scream back at the world “you should try it and see how well you would do.”

The calls aren’t coming from inside the house as much anymore.

I can proudly say that there were several moments this Lent where I stopped and thought about a decision and then I said to myself “I choose me.”

When I thought about not getting my leg checked out for a clot because of how much time it would take, I chose me and I went and got it checked out anyway.

When I thought about forcing myself to go to mass in person but then realized that I did not have the energy and was only trying to go because I felt guilty, I chose me. I laid back down. I watched mass from home and I wrote to my church about getting someone to bring me the Eucharist.

I’m starting to accept that asking for services isn’t shameful. It’s what they are there for. Accepting that I am chronically sick and disabled is the first step to getting the world to accept me as I am.

It’s all still very much a work in progress. But, I do think those 40 days were enough to bring about a change. I had serious doubts and struggles. But, I think after it was all said and done, I did prevail on my lenten journey after all.

#longhauler #voicesofthevirus #longcovid #disability #chronicillness #cfs #chronicfatigue