Crashes and/or depression?

[Stretched]

Today is a lost day for me due to crashing - one of my worst. I feel so systemically bad and brain fogged, with depression, all so bad that I’d have to have a twin to feel worse! Apparently this is due to a 3 hour, 50 mile driving round trip for a doctor’s appointment, along with about a mile of walking.

I know some of it includes an increase in otherwise ‘as usual’ depression due to having CFS. I’m curious if maybe the whole dynamic actually transposed more to depression, since the feelings are so downbeat and dreadful? It was a long, multi person interaction. I’m not otherwise prone to depressive episodes.

Do other PWCs get hit with depression like this or is the nature of your crashes different?

 

[ljimbo423]

I know some of it includes an increase in otherwise ‘as usual’ depression due to having CFS. I’m curious if maybe the whole dynamic actually transposed more to depression, since the feelings are so downbeat and dreadful? It was a long, multi person interaction. I’m not otherwise prone to depression episodes.

Do other PWCs get hit with depression like this or is the nature of your crashes of a different nature?

The best word I have found to describe how I feel during significant PEM or a crash is demoralized. I loose most of my hope and most of my objectivity to how I really think and feel without the PEM.

It doesn't feel like depression, it somehow feels different and it's hard to put into words. That's why I say I feel demoralized. It feels like my brain has turned to mush and I can't think or feel how I really think and feel, when I'm not in a flare, if that makes sense.

That state of mind makes me loose most hope I have and hope is what keeps me motivated and continuing to look for solutions. When PEM takes that, it's a really bad and scary feeling!

EDIT- The other thing that happens is that I'm often aware that PEM is messing with my thinking and that's why I feel like I've lost so much hope. Even though I'm aware of this, I still can't change how I feel until the PEM passes.

 

[Stretched]

@ljimbo423 ‘Demoralized,’ what an apropos description. I can well relate to your narrative.

 

[Sidney]

Today is a lost day for me due to crashing - one of my worst. I feel so systemically bad and brain fogged, with depression, all so bad that I’d have to have a twin to feel worse! Apparently this is due to a 3 hour, 50 mile driving round trip for a doctor’s appointment, along with about a mile of walking.

I know some of it includes an increase in otherwise ‘as usual’ depression due to having CFS. I’m curious if maybe the whole dynamic actually transposed more to depression, since the feelings are so downbeat and dreadful? It was a long, multi person interaction. I’m not otherwise prone to depressive episodes.

Do other PWCs get hit with depression like this or is the nature of your crashes different?

I sympathise deeply.
Strangely, after 5 years of this illness, suffering but never depressed - it suddenly hit me a week ago. I never knew what real depression meant before: sadness, helplessness, frustration, hatred of losing mental functions, yes: but not depression. But you really know it when it hits you. Mine changed in a couple of days thank god; but I now know that it can happen to me, (due to aging?) - in a bad crash.

If I had to ride 3 hours in a car I’d be out of this world : after 1/2 hours on 2 subsequent days, driven by a very sympathetic close relative, and doing nothing else, I was in an extreme crash for a week.

 

[jesse's mom]

Demoralized is a really good word. Helpless and sad are there too.

 

[Rufous McKinney]

It doesn't feel like depression, it somehow feels different and it's hard to put into words. That's why I say I feel demoralized. It feels like my brain has turned to mush and I can't think or feel how I really think and feel, when I'm not in a flare, if that makes sense.

Yes! I know this is not: standard depression. This is: our totally understandable vast Disappointment.

It is Poignant = painfully affecting the feelings : PIERCING

for me: I know it will lift at some point and then I will become, again: briefly interested in the exterior realities others are engaged in which I generally ignore: called Actually Living.

I understand Jennifer Brea named her film: Unrest. Great name. I have yet to see it, but will.

I would name my film: Taken. Except "Taken I, II and III" are already Taken.

Looking forward to is: Taken

Maybe I can come is: Taken

Make an actual appointment and show up: Taken

I'd like to chat, but when I hold a cell phone, my brain is entirely TAKEN.

 

[Rufous McKinney]

This week I did feel a kinda: more depressed feeling....which I believe was partially triggered by the conference, by the conversation out there in Australia, my desparate desire we all share for an immediate real answer and an immediate real TREATMENT.....and yet meanwhile my brain is Taken, and ability to process these complexities is worse than usual (crash, dental work and novacaine and Mast Cell event).

So literally I am assigned, if I can stand: to walk around this one block and sit over there on that bench in that sun for 15 minutes and just let some sun shine on me, and my eyes, which are so blurry can barely see...just a little sun. A breeze on my skin: felt GLORIOUS. Birds chirping. I often am not outside for days at a time. There must be more oxygen here. I am fortunate our weather is now springtime vibrational.

So this is my current self assigned graded excercise therapy. I dare not: walk more than that one block. "a little walk outside around the block" gets abruptly curtailed for like weeks at a time, here lately. Was that SIX WEEKS ago, the last time I could walk around the block?

 

[Rufous McKinney]

hope is what keeps me motivated and continuing to look for solutions. When PEM takes that, it's a really bad and scary feeling!

And then that scary feeling is: also our understandable ANXIETY, unrepaired organ systems, disrupted insulin.

I know for me, sometimes more information is NOT helpful. Seems like: I see Lactic Acid in my Brain and now its all pink (like some see dead people). I feel oxygen starved and feel my non-deforming red blood cells all jammed up and not reaching the organs. I see no collagen happening. Space Aliens may live in my intestines and mouth. So: I need to titrate all that, just look into a little something but try not to get overwhelmed.

also just need to , whenever possible, introduce the little positive things to offset the large tsunami of negative things.

 

[percyval577]

I never let this feeling rule (sudden or not). I don´t agree with that feeling. I don´t pity myself.
But he price for that might be that I think it´s still a nonsense world. But it´s probably true enough.

When I entered school I got somehow demoralized, because I could not keep up with other childs.
When I was in my early twenties I felt depressed, but was able to enjoy this feeling.
When I detoriated at the age of thirty and being sqeezed, I only thought: Ok, my wit is not completely gone.

The real moral desaster apeared when I started to improve, only now I really needed help ... (like in chemoth.)
Although I knew (thoroughly) that the societies wouldn´t be steadfast, I am deeply disappointed.
Ppl appear not to be able to think in possibilities. It´s only "This is this.", no freedom (cared for) and confidence.
I got physically harmed. It´s my fault that I took "conversations" for real human conversation.
I am deeply concerned about societies. Can it make me strong again?

 

[ljimbo423]

for me: I know it will lift at some point and then I will become, again: briefly interested in the exterior realities others are engaged in which I generally ignore: called Actually Living.

I also know it will lift or pass and for me that it will be within 24 hours. My PEM lasts for 24 hours like clockwork, then it's gone. However I still often feel like I haven't made any progress or my health has gotten worse, while I am in the PEM.

Even though I have made a lot of progress and continue to make progress, slowly. The PEM or flare absolutely destroys my objective thinking and feeling. Which are usually very optimistic and upbeat.

It seems to me that PEM or flares profoundly effect my brain. Probably by causing an increase in the low grade brain inflammation that Jarred Younger has found in his ME/CFS research.

 

[Rufous McKinney]

continue to make progress, slowly.

I am attempting a personal launch of a modest experiement with: graded exercise therapy. Its called- if I can stand and if I am not in a big CRASH, I will do everything possible to walk around this one block and sit over there on that bench in the sun for a little while.

After a protracted crash lasting (was that weeks or months?)..I am in a state of severely deconditioned and I know that. And I"m not outside and the sun just kills my eyes. And I just have to get better somehow. And FYI: the April 1 plane tickets to my new grandchild will be returned and replaced with early June. So that gives me: a few more weeks to : be cured!

Day 1: somehow I got around the block even tho my legs did not really understand what walking is. ANd what is forward. So eventually the knees aren't sure what forward is. But it felt nice and I enjoyed the bench and sun. Felt: a little better. Encouragement. That evening, I felt really really nicely relaxed in my chair, that was a treat. The movement felt helpful.
.
Day 2: I'm ok, I am not worse. I walk around teh one block again, but my hip flexors are sorer. I sit on the bench, but I am not as comfortable.

Day 3: I got around the corner and ran into a friend that lives on the corner. So I stood there and we chatted for about 1/2 an hour. It was really nice. Then: I started to realize that I was going to fall over at any moment. My legs were jello. I said: I have to go now. She kept talking. I was feeling like I might faint and my voice, where dwelleth my Venus, and EBV, my voice is now going goin gone.
Somehow I walked back. My heart is: well beating really hard from this: generally NOTHING exercise event.

I'd say tomorrow I had better NOT do this.

 

[Rufous McKinney]

I'd say tomorrow I had better NOT do this

Note to self:
Reporting on Day 4 of self imposed Graded Exercise Therapy: crash. No voice when I wake up, eyes squeezed, Marine fog. Laundry trip cancelled. Minor leg cramps. Slept (n a non-refershing way, yet I did dream!) 11 hours.

Watched UnRest last night with my husband. I cried , my husband became: far more aware, and hugged me after. Jennifer Brea deserves Academy Award for Non-Fiction.

 

[Rufous McKinney]

my husband became: far more aware,

Sympathy from husband: post-UnRest, continues. He is now more worried. He sees' I've gotten Worse. He sees that we can: Fall Over.

I was struck by: why do people so take for granted that bodies actually work? As I watched Jennifer fall, the miracle so many take for granted: is just stunning.