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A Letter to Myself

Dear me,

I know you are tired, and scared, exhausted and overwhelmed. I see you fighting every day for small wins; for coaxing 5 more minutes of chores out of your body, for smiling when you want to collapse from the pain of it all, for one more deep cleansing breath when your mind is screaming and your chest is so tight you don’t think it can still expand.

And I know that this is all new, and strange, and scary. That none of what you are dealing with is what you were promised life was going to be. That you are doing your very best in the only way you know how.

I see you trying shove down all of those feelings, all of those worries, that daily pain. I see you pushing your body for things that it can’t do any more, and being angry with yourself for losing control of your body, your brain, your emotions. Those are such hard, cruel habits. They are what’s gotten you through 35 years, gotten you praised and stroked and admired.

But we know those tools don’t really serve us anymore. Those are for a time and a place that we no longer live in. We don’t have to do that anymore. Now, we can remember that kindness and boundaries and needs are not weakness, or selfishness. It is ok to be sad. It is ok to ask for help. It is ok to tell people when we are not doing well. It is ok not to hide our feelings from our loved ones, our diagnosis from our family, our disability from the public. We are allowed to prioritize one chore over another, to have to write a note on the refrigerator because we will forget otherwise. It is ok to turn down invitations, rather than force ourselves to attend things we don’t actually want to do, to the detriment of our physical and mental health. It is even ok turn down things we DO want to do.

We have new tools that we are allowed to use. I know how hard it is to break those old habits, how scary it is to allow ourselves things that have always been forbidden. How hard it is to unlearn all of those things.

We will not beat ourselves up when we realize we’re back in old habits.

We’ll take a deep breath, and keep trying new things, until they are as comfortable as the old ones. As many times at it takes.

I love you.

#ChronicIllness #ChronicPain #MentalHealth #selfcare #functionalneuropathicdisorder #PNES #Migraine #Anxiety #Depression #BipolarDisorder #SchizoaffectiveDisorder

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Fall Risk

Well, this is a terrible introductory post, but hey, what can we do?

After a hard fall today highlighted issues with my ability to call for help, I need options. I fell in my kitchen, with my functional side of my body pinned under my non-functional side. My phone was on the charger, and the Alexa had too poor of an internet connection to call anyone.

Does anyone have ideas or suggestions for a fall detection system or device? I would prefer one that activated itself, and that called a selected contact instead of 911. I have relatively reliable internet, access to very reliable unlimited date, and a Samsung Android system.

If we can't figure out a good way to do this, I'm going to lose my ability to ever be alone, and I have already lost enough of my independence, I'd much rather not lose this, too.#functionalneuropathicdisorder #FND #PNES #BipolarDisorder #ChronicPain #Independence #fallrisk