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GiaK

One way I found meaning during psych drug withdrawal

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GiaK

Twitter as therapeutic agent 

 

 

 

An interview about how twitter helped me heal and transform when I was struggling with a grave and serous long-term chronic illness. I often refer to that time of my life as a dark night of the soul. See: Monica’s story: the aftermath of polypsychopharmacology and Dark Night of the Soul posts

 

During the period of time I’m discussing I was not tweeting from an account that made my identity known, so most people following me were not following me because I was the author/editor of Beyond Meds. This was by design so that I could simply be an anonymous member of humanity. I was healing and truly needed a safe and quiet place for myself. I still actually create such spaces for myself online where I can be a somewhat private citizen.

 

This interview came to be because Erica Fletcher, a grad student working on her thesis was interested in my experience.

 

I’ve often said there are as many ways to heal as there are human beings. This was a significant part of my path for a good long while.

—-

And just for fun below I have listed a collection of posts that have used tweets from twitter as their foundation. They were tweeted from several different accounts as I healed. Some as the author of this blog and others from my more anonymous accounts. Today I only use one account on Twitter and I really don’t use it like I used it when it was my therapeutic agent anymore. Our needs change as we grow and heal.

 

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oskcajga

Not entirely sure why this post hasn't been responded to yet, but I found it very helpful.  Currently going through a very difficult time and find that any videos from people who have gone through this treacherous experience can be extremely helpful to me because it helps me realize that I'm not the only one.   Just from observing  Monica Cassani in that video, I can say she's like 900% better than I currently am, and it sounds like she went through a hell of a time for many years.  That gave me a lot of hope.

 

I often wonder if it's permanent, it feels permanent.

 

Thank you.

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btdt

"I often wonder if it's permanent, it feels permanent."

 

It always does. I looked at video taken at family events when I was in the early days I don't even look like myself. It is not just aging either though I feel this has aged me about double what I have actually aged yep look like crap. It was the vacant eyes the avoiding looking at people trying to avoid and distract myself from the activities as I could barely tolerate being out of the house. One day I will look again maybe I don't seek them out but when I am shown by others I cringe as it all comes back like a bad dream and makes my skin crawl yep surely gives me the creeps. 

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btdt

I can't believe how well she looks :) I have never used twitter and don't think I will not my thing. 

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oskcajga

I can't believe how well she looks :) I have never used twitter and don't think I will not my thing. 

 

She looks completely normal for the most part, maybe she has some personal issues that she feels are limiting but I can't tell.  I don't think there are any other videos of Monica on the internet to compare against, but I'm impressed.

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GiaK

the term "invisible illness" exists for a reason....

 

and everyone thinks it will never get better at certain junctures too...sometimes those junctures last for years...

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GiaK

twitter is definitely not for everyone  :) but when it works...it works...as with all things, I guess. 

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GiaK

and yes, I'm still living with a lot of stuff...though I handle it differently now...

 

I wrote this today about my experience...about one of the many windows I use to help me both understand and heal:

 

Food sensitivities, histamine and mast cell activation syndrome http://beyondmeds.com/2015/05/27/food-sensitivities-mast-cell/

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oskcajga

and yes, I'm still living with a lot of stuff...though I handle it differently now...

 

I wrote this today about my experience...about one of the many windows I use to help me both understand and heal:

 

Food sensitivities, histamine and mast cell activation syndrome http://beyondmeds.com/2015/05/27/food-sensitivities-mast-cell/

 

Hmm, never thought that the food sensitives were related to histamine.  Interestingly, my food sensitivities have significantly improved in the last year or so after I smoked too much pot (while simultaneously coming down from 10mg of adderall, which I have since stopped 8 months ago) and completely destroyed my central nervous system (significantly exacerbated ALL withdrawal symptoms, still recovering from that brilliant decision). 

 

I still have pretty bad sensitivities to SOME but not all of the list of foods high in histamines (e.g., no issues with peanuts, nuts, beans, etc, etc, but I can't really tolerate processed meats too well, and I definitely cannot handle alcohol, chocolate, etc too well).  I tend to also be very sensitive to sugar, although it's gotten like 10X better than it was a year ago.  I used to not be able to even handle a single peice of candy, now I can sometimes eat an entire pack without any issues.

 

Anyways, thank you for responding and I enjoyed reading your article (though I have a lot of eye pain when I read, so I have to be careful not to push my eyes too much).  I personally found that many of my symptoms were very similar to a list that you had once compiled in your blog several years ago, and so I suppose I should expect a similar course of recovery as you've demonstrated.  Sorry to hear that you still have setbacks and limitations.  I'm grateful that you took the time to write a blog and share your experiences, because the number of people who have done such things are very limited.  You write very well and express yourself in an excellent way, so that's very helpful too.

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btdt

twitter is definitely not for everyone  :) but when it works...it works...as with all things, I guess. 

I don't use twitter because I am too paranoid. Period I was not commenting on how it helps people I don't know anything about it and you do look marvelous I mean great hair skin and teeth lol as a human your a good looking one :)

 

This may be rude I have a hard time figuring out what is rude and what isn't some days if it is rude just ignore it.. here it comes.  Did you have a time where you did not look at all like yourself and then after that where you just looked awful all the time like you were missing something major in your diet like iron or looked like you had a major disease... then you recovered to look great like you do now... I know you can look good and still be suffering lets not complicate it more.

 

I ask because I had a time before wd where I looked like a normal person.  Then in wd I went from looking like a flu victim to a even sicker person... I was pale my face was swollen in odd places there were pockets of fluid that just seemed to hover over some areas I would have sores and muscles would stop working like my one eye fell or something all the muscles around it slipped ... then after a long long time it got a bit better and bit better... but still I look sick. I still do not look like a normal well person.

 

That is all I am asking if your appearance went thru stages I am asking in case there is still a chance or is this it ... I know you can't answer that it is a thought process in my own mind I am looking for evidence is all.. a history on how this went for you.

 

Again if you don't want to answer that is find too.

peace 

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GiaK

I was obese most of the time I withdrew...I looked like a different person than I do now for a lot of reasons. I couldn't sit upright for about two years because my blood pressure was so low, so not only was I bedridden, I couldn't even sit up. I didn't have the strength to hold my hand up to my mouth long enough to brush my teeth. I'm lucky my teeth didn't rot away. My gums are a bit of a mess but I now take meticulous care of my teeth. I couldn't speak either during that time (most of the time...I could some of the time)...for about two years...isolation was total and complete for that reason. The phone wasn't an option except on rare occasions. My muscles got totally atrophied...I had enough strength to get to the bathroom to pee but not enough to do anything else out of bed. Bedridden means I didn't leave the house for two years as well. I was f***ing sick and I looked f***ing sick. This is why twitter saved me. No washing, no haircuts (I hacked my hair off at one point so that it would just be out of the way)...I was completely nonfunctional...I needed 24 hour care (which my husband provided...it was total hell for him too...isolation too...because no one understood or cared what was going on in our house). I would have died without his care...this I have no doubt about. 

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GiaK

also...I really don't know what I looked like. I wasn't spending much time in front of the mirror. Honestly it wasn't something I had the energy to consider. 

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manymoretodays

Thanks.  Good to see you here.  I don't think I can do this alone anymore and I don't think I can go back on much of anything.  And I wish I couldn't think at all for a bit.

 

I mean is there anyone.......anyone at all........who gets to the other side of this in some kind of shorter time frame? 

 

It's just today.  It is just really bad and feeling hopeless today.

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LoveandLight

Well, Giak

 

I think you look incredible :) x

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btdt

Thank you Monica I took some pictures of myself because the way I looked terrified me I was sure a doc would see it and say this is ..... but that never happened I was in and out of head so many times I did not have a doc for a long time even after I went ct...not a GP and I would forget. The other pictures ohter people took If you were to see me before and after you would not recognize me.

 

One day I wanted to go to my friends grave and talked my cousin into driving me to the city when we were there I went to a place I use to go all the time to eat and not one person knew it was me not the servers that knew my name not the casual friends who use to speak to me... I certainly did not want to speak to them or my cousin really I just wanted to lay flowers on a loved ones grave... and the price to get that done was to buy lunch.  Maybe some day if I ever get over being  paranoid I will post some of those pictures if I can still find them. I just had to ask in case there is really something else wrong with me other than wd... I always wonder that. 

 

 I have always been scattered in this healing journey as life has just pushed me here and there with others to care for along the way and one tragedy after the other. 

This is how it seems today and feel depleted... I was fat too and I am still fat but I was even fatter earlier on. I look at you and see what is possible and I want it... can I pull it all together I don't know if I can or not.  I think it is certainly more than time that heals... it is care. 

 

Thank you so much for such a generous answer I know it took your time and effort to compose that and put the links together.. I hope to be sensible enough to use them. 

peace

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GiaK

Most people make it through much, much faster. Most people don't get heinously ill. I try to make that clear...it's often a difficult journey but it's not generally like it was for me. 

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manymoretodays

Okay.  I mean I am still doing it.......like what choice do I really have?  I have had equal parts of being okay with it and then not so far today so.........

 

If I can just remember that all things pass........I mean I don't go full days of despair anymore.  I hope musicians keep popping in my head to listen to.  Suzanne Vega seems to know........what I need to hear today.

 

Yah.....are there simple instructions on how to twitter.  And then do you just pick handles that you want to follow and listen for awhile?  It would be nice to condense my words.  But I don't think I can deal with notification sounds or anything......  I spose I should google it.  My computer is slow though when I use youtube or any second window for that matter.

 

TGIF......like that has anything to do with it anymore.

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GiaK

no sounds on twitter...you can take as long as you want to learn...but you pretty much just need to do the time...and yes, try googling it...I just learned it by doing it though...there is definitely a learning curve to figure out how it works...and people seem to either take to it or not...give it a try...if you like it, great...if you don't that's okay too. 

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oskcajga

I was obese most of the time I withdrew...I looked like a different person than I do now for a lot of reasons. I couldn't sit upright for about two years because my blood pressure was so low, so not only was I bedridden, I couldn't even sit up. I didn't have the strength to hold my hand up to my mouth long enough to brush my teeth. I'm lucky my teeth didn't rot away. My gums are a bit of a mess but I now take meticulous care of my teeth. I couldn't speak either during that time (most of the time...I could some of the time)...for about two years...isolation was total and complete for that reason. The phone wasn't an option except on rare occasions. My muscles got totally atrophied...I had enough strength to get to the bathroom to pee but not enough to do anything else out of bed. Bedridden means I didn't leave the house for two years as well. I was f***ing sick and I looked f***ing sick. This is why twitter saved me. No washing, no haircuts (I hacked my hair off at one point so that it would just be out of the way)...I was completely nonfunctional...I needed 24 hour care (which my husband provided...it was total hell for him too...isolation too...because no one understood or cared what was going on in our house). I would have died without his care...this I have no doubt about. 

 

 

This is a very vivid and horrifying (only because I've been in a similar, though significantly less disabled state) description of your situation.   It's truley miraculous that you recovered as much as you have from that low level of functioning.  Definitely lucky that you had an understanding and caring husband that took care of you during the more difficult years.  I'm sort of shocked at how well you appear to have recovered from that experience.  It gives me hope, because if you could recover from that level of sickness, certainly someone like me who has had a MUCH easier time of it (though still completely debilitating) can recover from this. 

 

I guess it just takes a while for some of us.  Thanks for providing this information to us, it's extremely helpful to understand what you've been through - as odd as that might sound.

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