Struggling with my demons


I've started this blogpost a number of times and then deleted it.  I hate feeling this way.  I don't mind talking about difficulties but prefer to do so after the clouds have passed.  There is something that feels almost defeating about admitting what I'm struggling with, especially when it feels so miniscule when compared to the greater problems in this world.

But my world is small.  I have windows where I can peer at the rest of the planet, and you'd think I'd be fairly well protected.  And I am, until I'm not.  Despite mine and my family's efforts to create a secure fortress for me to live safely and to the best of my abilities, things seem to sometimes seep in through those carefully crafted walls.

And that's been a recurring theme the past several months.

On a brighter note, my most recent echocardiogram showed no further deterioration in my heart. There's been no further enlargement since the last one, and my mitral valve regurgitation is no worse. My last pulmonary test results were within normal ranges so I'm holding my own with this LAM disease so far.  

You'd think I'd be over the moon.

I short while back, I got a letter from Service Canada.  Anyone on Canada Pension Disability got it.  It was the topic of the week in several online support groups and I'm not the only one who was more than a little freaked out by the questions concerning any volunteer work I might be doing.  I ended up crafting a letter updating them on my condition and sending it off.  Every day, I wait for the mail to be checked to see if I've had any response.  It has made me very anxious.  

I've been trying to sell the property I had originally purchased in 2016 with the plan of turning it into a studio/shop.  I got an offer within a week of listing, but there have been complications and delays.  And I'm finding every one of them very stressful. By now (mid June), I had expected to have been spending some of that money on needed household repairs, but that hasn't happened yet.

I ended up resigning from a volunteer organization I helped found due to complications it introduced into this real estate transaction and my financial security (long story, won't bore you with the details) and that was upsetting and unexpected.

A short while back I had the worst night time anxiety attack since late 2018. It was horrible.  I was so hypervigilant.  It was like I was waiting to be startled and on the verge of screaming.  I sat up, in my living room, all night long playing solitaire, trying to keep myself distracted.  I didn't try to go to bed until after I heard the birds starting to sing around 4 a.m. Sleep issues are a sure sign of increasing stress.

As a family, we've been reviewing our expenses, trying to figure out what we can do without and what is non-negotiable. I know there are a lot of families facing similar tough decisions these days.  But it all adds to the load.  In decades past, I'd just get another job, or find a second source of income.  But those options aren't open to me anymore. 

Feeling vulnerable isn't new.  After a brush with death, any SCAD survivor will tell you that it takes time and ongoing effort to deal with the feelings left by the experience itself as well as any lasting physical effects. But it leaves you with a wound that never really heals.  

As a result, it really doesn't take much to upset the balance for me.  And I stumble into a dark place every time.  That heaviness and darkness saps what energy I have and makes things I can do seem out of reach. Which is why I closed my little online shop. I didn't feel I could do that justice.  I've not even uploaded a video in over a month.

I've been overly emotional and cry at the drop of a hat. I've taken refuge in my video game of choice (Pokémon Go) and struggle to not be the face of doom and gloom at home.

If I manage to spend a little time in my garden, get out for a walk, do a few household chores, that's all I'm doing.  I don't want to leave the house to go anywhere or do anything beyond a quick trip to the local hardware store. I have family within 1.5 hours of my home that I rarely see because of my growing paranoia around COVID19.  Omicron is still out there and "long COVID" has become a real threat to some of my fellow survivors/LAM sisters, leaving some with heart and pulmonary problems on top of what they already had.  With mask mandates gone, any plans I might have had to go further afield evaporated.

Right now it's a struggle to stand on the edge of the abyss and not fall in. The darkness rises and swirls around me, but if I don't move around too much, I can keep my footing, such as it is. It has been a crappy few weeks for sure.

Thankfully, I've been around long enough to know that nothing stays the same, not even crap. So while inevitable change can be a horrible let down, and a source of pain and stress, it can also be a small ray of hope when you're living in a dark place.

Just like starlight is sometimes best seen with our peripheral vision, so too, at times, is hope.



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