Self reflection time. [Image description available]
I'm having a weird time. I want to say that I'm not sure if I'm the only person who feels this way but after a year and some of finally connecting with other spoonies I've learned that pretty much everything I feel/go through someone else can relate to on some level.
If you've seen my post recommending medical marijuana you know that it's given me a higher quality of life. It's generally effective on a daily basis. Even if it doesn't take away the full force of the attack it dampens it. With medical marijuana I vomit and am dizzy less, I'm either saved completely or partially from the birth-like pains of a migraine and the horrifying post-dromal fatigue that comes with as well as the chaos that is having a seizure disorder. Medical marijuana also helps clear my head from the intrusive thoughts of ptsd and calms me down from soul crushing panic attacks and nightmarish episodes of dissociation.
Sometimes medical marijuana is the difference between me being mostly bedridden and being able to roam the house. Sometimes it's the only thing that's allowing me to be outside. I'm not going to say it's a perfect miracle drug for me and that I become able bodied because of it because it's not. But God it is soo helpful and it really does increase my quality of life. Sometimes I am at the brink of having an attack or episode and instead of potentially laying in bed the whole day or the majority of it I can just continue on like nothing ever happened I still feel crappy but I don't feel like I'm dying. I have an illness that attacks my immune and nervous system and that significantly aggravates my vestibular migraine disorder to an unnatural level. I have between 40 almost 50 migraines a month. The average attack rate is between 2 and 7 a month and it's considered chronic when it reaches 15. I can have 1-3 seizures a day which usually come around the same time as the migraines do. I also deal with ptsd and anxiety on a daily basis as well as nausea, I basically have morning sickness without pregnancy. Im a hermit and can't leave my house very much because all my energy goes into fighting. Basically all my illnesses feed off of each other, medical marijuana provides relief for every single one. Needless to say, I'm very much a pothead, but it's out of necessity.
But I feel guilty about it, I feel like I'm this 'lazy' 20 year old pothead thats not in school, not working, not doing anything with their life besides sitting in the house/in bed and getting high and watching netflix scrolling about on their computer/phone.
It's strange because I would never ever make someone else in my position feel guilty about it because of course if your disabled as shit and you have any kind of substantial relief from it then you would be very happy and grateful for that relief. Hell I love marijuana, I do. I really do and it goes far past just wanting to be high. I mean I love being high but I fucking love that feeling of knowing I just got my day back. I can sit in my living room or take a walk or leave the house or prepare myself some food or do something else instead of being tied down to my bed suffering immensely for long long hours. And if the attack is too strong it makes it much more manageable. Maybe my convulsions will be less violent or my pain/symptoms will be easier to treat with other remedies. I came to medical marijuana when my disabilities drove me to a point where I was crying "I just can't live like this, a human is not supposed to live like this". & I've found myself choking up with tears because of the relief it gives me. Marijuana is beautiful y'all. & I know I'm not the only one whose become a pot loving spoonie stoner because of it, yet I still feel guilt.
I think maybe im just suffering from chronic illness guilt in general... The kind that you get from being an inactive homebody who isn't contributing to capitalism. But the thing a lot of guilty spoonies forget is all the text in between the lines.
We aren't at home all day not in school or at work watching tv or online because we want to relax and laze around enjoying ourselves. We are here because we are dealing with a tremendous onslaught of bodily dysfunction that some people could not begin to imagine and this is why we have such a hard time being understood by even the most empathetic able bodied people, because it's a completely different world. Our bodies have been ravaged to the point that it's all we are capable of doing, it's not enjoyable in any way to be sick as hell stuck in a house or bed missing out on your life and your dreams it's soul crushing not relaxing.
I don't mean to sit here and perpetuate the "being disabled is worse than being dead" thing. But it really can push it. I don't think I'd be here today if I didn't have marijuana or the internet.
These two things make giant differences in my life. I'm extroverted, I use the internet to compensate for my inability to regularly go outside. Among a multitude of things the internet has allowed me, having the opportunity to physically connect with people from my home is my absolute favourite. Those people can be awesome new friends, hot guys, or spoonie friends. This is just one way the internet gives me a sense of normalcy and like I just might be partially spared from completely missing out on my 20s I couldn't imagine living like this completely isolated and with no kind of physical relief. Spoonies pre 1990s were a whole nother level of tough.
When I think of it, it sounds silly to feel guilty for actually loving and feeling strongly about something that gives you a better quality of life. With that said.
If you've seen my post recommending medical marijuana you know that it's given me a higher quality of life. It's generally effective on a daily basis. Even if it doesn't take away the full force of the attack it dampens it. With medical marijuana I vomit and am dizzy less, I'm either saved completely or partially from the birth-like pains of a migraine and the horrifying post-dromal fatigue that comes with as well as the chaos that is having a seizure disorder. Medical marijuana also helps clear my head from the intrusive thoughts of ptsd and calms me down from soul crushing panic attacks and nightmarish episodes of dissociation.
Sometimes medical marijuana is the difference between me being mostly bedridden and being able to roam the house. Sometimes it's the only thing that's allowing me to be outside. I'm not going to say it's a perfect miracle drug for me and that I become able bodied because of it because it's not. But God it is soo helpful and it really does increase my quality of life. Sometimes I am at the brink of having an attack or episode and instead of potentially laying in bed the whole day or the majority of it I can just continue on like nothing ever happened I still feel crappy but I don't feel like I'm dying. I have an illness that attacks my immune and nervous system and that significantly aggravates my vestibular migraine disorder to an unnatural level. I have between 40 almost 50 migraines a month. The average attack rate is between 2 and 7 a month and it's considered chronic when it reaches 15. I can have 1-3 seizures a day which usually come around the same time as the migraines do. I also deal with ptsd and anxiety on a daily basis as well as nausea, I basically have morning sickness without pregnancy. Im a hermit and can't leave my house very much because all my energy goes into fighting. Basically all my illnesses feed off of each other, medical marijuana provides relief for every single one. Needless to say, I'm very much a pothead, but it's out of necessity.
But I feel guilty about it, I feel like I'm this 'lazy' 20 year old pothead thats not in school, not working, not doing anything with their life besides sitting in the house/in bed and getting high and watching netflix scrolling about on their computer/phone.
It's strange because I would never ever make someone else in my position feel guilty about it because of course if your disabled as shit and you have any kind of substantial relief from it then you would be very happy and grateful for that relief. Hell I love marijuana, I do. I really do and it goes far past just wanting to be high. I mean I love being high but I fucking love that feeling of knowing I just got my day back. I can sit in my living room or take a walk or leave the house or prepare myself some food or do something else instead of being tied down to my bed suffering immensely for long long hours. And if the attack is too strong it makes it much more manageable. Maybe my convulsions will be less violent or my pain/symptoms will be easier to treat with other remedies. I came to medical marijuana when my disabilities drove me to a point where I was crying "I just can't live like this, a human is not supposed to live like this". & I've found myself choking up with tears because of the relief it gives me. Marijuana is beautiful y'all. & I know I'm not the only one whose become a pot loving spoonie stoner because of it, yet I still feel guilt.
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| Not my post. |
I think maybe im just suffering from chronic illness guilt in general... The kind that you get from being an inactive homebody who isn't contributing to capitalism. But the thing a lot of guilty spoonies forget is all the text in between the lines.
We aren't at home all day not in school or at work watching tv or online because we want to relax and laze around enjoying ourselves. We are here because we are dealing with a tremendous onslaught of bodily dysfunction that some people could not begin to imagine and this is why we have such a hard time being understood by even the most empathetic able bodied people, because it's a completely different world. Our bodies have been ravaged to the point that it's all we are capable of doing, it's not enjoyable in any way to be sick as hell stuck in a house or bed missing out on your life and your dreams it's soul crushing not relaxing.
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I don't mean to sit here and perpetuate the "being disabled is worse than being dead" thing. But it really can push it. I don't think I'd be here today if I didn't have marijuana or the internet.
These two things make giant differences in my life. I'm extroverted, I use the internet to compensate for my inability to regularly go outside. Among a multitude of things the internet has allowed me, having the opportunity to physically connect with people from my home is my absolute favourite. Those people can be awesome new friends, hot guys, or spoonie friends. This is just one way the internet gives me a sense of normalcy and like I just might be partially spared from completely missing out on my 20s I couldn't imagine living like this completely isolated and with no kind of physical relief. Spoonies pre 1990s were a whole nother level of tough.
When I think of it, it sounds silly to feel guilty for actually loving and feeling strongly about something that gives you a better quality of life. With that said.
Viva la weed and la wifi.
Xoxo, Rad.
P.S. - I'm so sorry for the lack of image descriptions I often have a shortage of spoons and forget.
Follow my tumblr @RadSpoonieBlog
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