Chronic Fatigue

It’s mental health awareness week here in Aotearoa, New Zealand.

This year, the Mental Health Foundation of NZ’s theme is reconnect.

So the irony of feeling extremely detached from myself this week is real.

I’m not sure if it’s the waves of chronic fatigue, the turning of the tides in my life with LC, too much on my plate and no let up to get anything cleared off, daylight saving, CHANGE, the impending stress of trips and events and commitments and outfits and the obligation to somehow stay awake for all of it (God help me), or if, perhaps, it is indeed just all of it.

The beautiful but brutal conglomeration of ‘things’ crossing my ether has me feeling a bit worse for wear this week. Learning to live with a chronic condition is not easy, in fact a lot of the time, the reshuffling of an entire existence feels hopeless and lonely. I keep reminding myself that this is not my first rodeo, as if a second time in the saddle is supposed to feel more tolerable. Spoiler - it doesn’t. But it does give me a plethora of resilience to summon.

And in this resilience, is a little notion that says - ‘I didn’t come this far just to come this far’.

If you search that expression in my notes app, it appears in many a diary entry.

It’s an expression that I leaned on just last week and I do so again today.

For me, it acts as a persuasive reminder that yes, now feels punishing, but so it did once before, perhaps many times - and I made it.

So right now, I am choosing to reconnect with the journey that brought me here. It ain’t my first rodeo, and that often feels really scary and frustrating and unfair, actually. But if you’re familiar with my heroine Brené Brown’s work, then you might have heard, that there really is something about living life in the arena - and that the willingness to show up changes us.

We are all souls inside of bodies, just trying to figure this circus out.

We are all just walking each other home.

And we didn’t come this far, just to come this far.

#MentalHealth #ChronicFatigue

This past weekend I've had a great time. I went out to have drinks for the first time since the pandemic. I danced by myself on a dance floor for the first time ever. The next day I ate all the best hangover foods for me, which are also great foods for my chronic illnesses. And today I went shopping and got to pick out a whole new outfit. It's been amazing.

But I also have so much disability/chronic illness guilt. I use a wheelchair most of the time I leave my property, I rely on financial assistance programs, and I also rely physically, emotionally, and financially on the people who love me to supplement what the community fails to provide for disabled folks. I feel like I'm not supposed to go out, I'm not supposed to drink, I'm not supposed to dance or overexert myself. I feel super guilty for doing anything that might worsen my symptoms.

But I'm also allowed to choose what risks are worth it to me. I'm an adult, I'm allowed to drink and have a good time. In fact, the mental health benefits of getting out of the house and having positive social interactions likely supercedes any relapse or flare in physical symptoms I experience. And in my long term experience with my chronic illness, short term overexertion with appropriate rest and care can be beneficial long term.

I think I just need someone to tell me I'm allowed to make my own choices, I'm allowed to have fun, and I'm allowed to be disabled while doing so.

#Disability #ChronicIllness #MentalHealth #Anxiety #Depression #BorderlinePersonalityDisorder #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #IrritableBowelSyndromeIBS

Do you ever feel like your wasting away your purpose. Wondering how all your hopes and ambitions needs to be modified or snuffed out because your body no longer can handle keeping up with you mentally. #struggling #MixedConnectiveTissueDiseaseMCTD #Depression #Anxiety #ChronicFatigue