Hello all,
I will probably revise this a lot, but I've been thinking about writing here for weeks.... may as well just do it!
Thanks to my laundry list of chronic illnesses, this is a long post.
Some of you here who know me pretty well, already know most of what I'm about to write. However, some things have happened in the past two months that have added to my challenges in daily life.
First, the basics:
I am officially diagnosed with the following:
- Fibromyalgia
- Widespread arthritis - both osteo and inflammatory arthritis
- Lupus SLE (systemic)
- Parkinson's Disease - early onset and possibly genetic
- Major Depressive Disorder - Recurring (been over 30 years I've lived with this)
- General/Social Anxiety Disorder
- Autism Level 1 with Trauma/PTSD / unofficial self-diagnosed ADHD-Inattentive
-------------------------------------------------
The list above being given, I am happy to listen or share life experiences with anyone here who also lives with any of these illnesses. I am no expert in anything or anyone but myself and my own life. And, as a nun-in-training, nothing I say is a Dharma teaching or a teaching of any kind. Anything I say is just my own experience.
Caveat -- I don't consider being autistic to be an illness in any way. My brain just works differently than others. However, I felt it important to mention here, in case it's useful to others, and I am also happy to share experiences and thoughts with anyone who may also be neurodiverse and wishes to reach out about it.
What causes me the most difficulty in my daily life (as in every day), are chronic pain (moderate to severe), fatigue, and brain fog. The fatigue is also debilitating, and at times has been very dangerous. I used to experience it occasionally, or could "prepare" for it (taking a nap before I had to drive, for example). That has changed, however, and now the fatigue tends to dropkick me out of nowhere. This has happened while driving also - I now avoid driving more than 15 minutes unless absolutely necessary. The fatigue has been bad enough sometimes as to be very dangerous -- such as when driving longer distances, even though I had to do it. Thankfully, that time is over now, but it taught me my limits, and not to exceed them if I can avoid it.
The chronic pain .... sometimes mildly annoying but manageable; other times (more often) it is excruciating, feeling like knives, shattered glass, deep throbbing aches, fire, and worse. They tell me it's mostly neuropathy and nerve damage -- sometimes it is, but sometimes it has no known cause and/or it's arthritis or inflammatory arthritis. My joints are great weather forecasters.
The chronic pain that is most difficult to manage and treat, most likely comes from fibromyalgia, which is crazy-debilitating in its own right, but try telling Social Security (disability) that!
Note - I have written elsewhere about my experiences sitting (reclining) with chronic pain - especially when it is severe. I won't repeat that here, but for me it has been possible, and sometimes by just sitting with it, it has helped to ease it a bit - or at least eased my tension about it. I don't usually time my severe pain sessions - I just "sit" until I feel it's time to stop. I do this rather often, actually.
The brain fog makes it very difficult for me to think, remember, process, communicate, plan, and any other cognitive and executive function you can think of. It has cost me jobs by not being able to complete applications, remember deadlines, or even remember how to do something I already know how to do. It's literally like having "mush for brains" that I can't think, see, or process through. Sometimes taking naps helps, but not always. Sometimes I have to wait it out, and pray that people will understand.
Lupus SLE - systemic - Lupus is a strange animal. It's an autoimmune illness that currently has no cure, and it's basically the immune system attacking its own body. I liken it to a military gone rogue and attacking its own people, instead of protecting them from danger. Examples of "lupus in action" in my life have included Long Covid and a cold morphing into pneumonia within a couple days, requiring emergency treatments from my doctor to calm my immune system AND stop the pneumonia from getting worse. Long Covid was an absolute nightmare that took much longer than the official "few months" to get over. I'm still not entirely sure that my lungs or other organs are okay, and it was two years ago in September that I got sick.
Parkinson's Disease -- "newly diagnosed" in August, but (as usual) my neurologist said that my symptoms have been present for a while, and that I am "early onset". Supposedly people who have early onset have a better outcome, but it seems to be different for people like me - with multiple chronic illnesses and very symptomatic with all of them. So PD has complicated things for me even more, and I never know - even from hour to hour - whether I'll be able to walk okay, if my balance is okay, if my hands will work properly, if I'll be able to speak normally, if I'll be able to swallow my food and drink without choking on it. Every day is different, and sometimes every hour is different. As for "how" or "why" I have Parkinson's -- most likely genetics and repeated brain injuries throughout my life (starti
Major Depression / Anxiety - I have lived with these mental health challenges for over three decades. Medication has not worked that well for me -- except for one, but I think that one needs to be changed now. Other than medication, I've used a variety of methods to deal with chronic depression (it's not really recurring - it never leaves, just some times it's seriously debilitating, and other times like a low-level/constant shadow in my life). It started in my mid-teens, and I used to think it was just life circumstances and trauma. Last year I concluded that it's also biochemistry that requires medical intervention, although I use alternative remedies as well. Sometimes sitting shikantaza helps me cope with these illnesses, and sometimes I must do a different form of meditation to help lift the darkness.
That's more or less "me" in a nutshell, and why I end up being so quiet here and on social media, emails, texts -- really anything that requires communication and interaction, my illnesses can interfere with.
Again, anyone here is welcome to message me at any time about living with these illnesses - I don't give advice, I have no answers, but I am happy to listen, to affirm and support, and share "life in the trenches" from my own experiences.
May all be free from suffering; May all be at ease in all our ills; May all find peace and joy in equanimity.
Deep Bows to All for your practice.
, meian
--sat-today--lent-a-hand--
I will probably revise this a lot, but I've been thinking about writing here for weeks.... may as well just do it!
Thanks to my laundry list of chronic illnesses, this is a long post.
Some of you here who know me pretty well, already know most of what I'm about to write. However, some things have happened in the past two months that have added to my challenges in daily life.
First, the basics:
I am officially diagnosed with the following:
- Fibromyalgia
- Widespread arthritis - both osteo and inflammatory arthritis
- Lupus SLE (systemic)
- Parkinson's Disease - early onset and possibly genetic
- Major Depressive Disorder - Recurring (been over 30 years I've lived with this)
- General/Social Anxiety Disorder
- Autism Level 1 with Trauma/PTSD / unofficial self-diagnosed ADHD-Inattentive
-------------------------------------------------
The list above being given, I am happy to listen or share life experiences with anyone here who also lives with any of these illnesses. I am no expert in anything or anyone but myself and my own life. And, as a nun-in-training, nothing I say is a Dharma teaching or a teaching of any kind. Anything I say is just my own experience.
Caveat -- I don't consider being autistic to be an illness in any way. My brain just works differently than others. However, I felt it important to mention here, in case it's useful to others, and I am also happy to share experiences and thoughts with anyone who may also be neurodiverse and wishes to reach out about it.
What causes me the most difficulty in my daily life (as in every day), are chronic pain (moderate to severe), fatigue, and brain fog. The fatigue is also debilitating, and at times has been very dangerous. I used to experience it occasionally, or could "prepare" for it (taking a nap before I had to drive, for example). That has changed, however, and now the fatigue tends to dropkick me out of nowhere. This has happened while driving also - I now avoid driving more than 15 minutes unless absolutely necessary. The fatigue has been bad enough sometimes as to be very dangerous -- such as when driving longer distances, even though I had to do it. Thankfully, that time is over now, but it taught me my limits, and not to exceed them if I can avoid it.
The chronic pain .... sometimes mildly annoying but manageable; other times (more often) it is excruciating, feeling like knives, shattered glass, deep throbbing aches, fire, and worse. They tell me it's mostly neuropathy and nerve damage -- sometimes it is, but sometimes it has no known cause and/or it's arthritis or inflammatory arthritis. My joints are great weather forecasters.
The chronic pain that is most difficult to manage and treat, most likely comes from fibromyalgia, which is crazy-debilitating in its own right, but try telling Social Security (disability) that! Note - I have written elsewhere about my experiences sitting (reclining) with chronic pain - especially when it is severe. I won't repeat that here, but for me it has been possible, and sometimes by just sitting with it, it has helped to ease it a bit - or at least eased my tension about it. I don't usually time my severe pain sessions - I just "sit" until I feel it's time to stop. I do this rather often, actually.
The brain fog makes it very difficult for me to think, remember, process, communicate, plan, and any other cognitive and executive function you can think of. It has cost me jobs by not being able to complete applications, remember deadlines, or even remember how to do something I already know how to do. It's literally like having "mush for brains" that I can't think, see, or process through. Sometimes taking naps helps, but not always. Sometimes I have to wait it out, and pray that people will understand.
Lupus SLE - systemic - Lupus is a strange animal. It's an autoimmune illness that currently has no cure, and it's basically the immune system attacking its own body. I liken it to a military gone rogue and attacking its own people, instead of protecting them from danger. Examples of "lupus in action" in my life have included Long Covid and a cold morphing into pneumonia within a couple days, requiring emergency treatments from my doctor to calm my immune system AND stop the pneumonia from getting worse. Long Covid was an absolute nightmare that took much longer than the official "few months" to get over. I'm still not entirely sure that my lungs or other organs are okay, and it was two years ago in September that I got sick.
Parkinson's Disease -- "newly diagnosed" in August, but (as usual) my neurologist said that my symptoms have been present for a while, and that I am "early onset". Supposedly people who have early onset have a better outcome, but it seems to be different for people like me - with multiple chronic illnesses and very symptomatic with all of them. So PD has complicated things for me even more, and I never know - even from hour to hour - whether I'll be able to walk okay, if my balance is okay, if my hands will work properly, if I'll be able to speak normally, if I'll be able to swallow my food and drink without choking on it. Every day is different, and sometimes every hour is different. As for "how" or "why" I have Parkinson's -- most likely genetics and repeated brain injuries throughout my life (starti
Major Depression / Anxiety - I have lived with these mental health challenges for over three decades. Medication has not worked that well for me -- except for one, but I think that one needs to be changed now. Other than medication, I've used a variety of methods to deal with chronic depression (it's not really recurring - it never leaves, just some times it's seriously debilitating, and other times like a low-level/constant shadow in my life). It started in my mid-teens, and I used to think it was just life circumstances and trauma. Last year I concluded that it's also biochemistry that requires medical intervention, although I use alternative remedies as well. Sometimes sitting shikantaza helps me cope with these illnesses, and sometimes I must do a different form of meditation to help lift the darkness.
That's more or less "me" in a nutshell, and why I end up being so quiet here and on social media, emails, texts -- really anything that requires communication and interaction, my illnesses can interfere with.
Again, anyone here is welcome to message me at any time about living with these illnesses - I don't give advice, I have no answers, but I am happy to listen, to affirm and support, and share "life in the trenches" from my own experiences.
May all be free from suffering; May all be at ease in all our ills; May all find peace and joy in equanimity.
Deep Bows to All for your practice.
, meian --sat-today--lent-a-hand--
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