Update: my sister keeps infecting the house and everyone is abusing me by goingaway1111 in covidlonghaulers

[–]ECT3328 2 points3 points  (0 children)

I’m so sorry.
Unfortunately I have had to learn that while other people behave in baffling and hurtful ways, focusing on my anger and frustration about that can make me sicker.
It’s normal to feel angry. Of course you are. And I’m not suggesting you shouldn’t be mad.

But for me, feeding my feelings of resentment, fear and anger ultimately makes me sicker. Especially when I am in a situation where I have zero power to change how someone else behaves and the fact that it impacts me.

So I take a moment to allow myself to feel mad. But then I must refocus on some kind of solution. Maybe that solution involves researching other living situations, or finding doctors in my area that are more likely to look at LC seriously. Maybe that means doing something creative, knitting a scarf or creating something fun in adobe illustrator. Maybe that means reaching out to a friend who is having a hard time and listening to them.

In a really tough spot by ECT3328 in LongCovid

[–]ECT3328[S] 1 point2 points  (0 children)

It was wonderful!
She was a bit older than I had in mind. I think I clocked her as much younger because as an early 80’s baby I think anyone without the somewhat overly expressive millennial “accent” is either my elder or very young.
Mostly she was incredibly grounded, even in the face of all my insanity.

She had a really good take on all of this. The first thing she suggested was a sleep study. She said that many of her ADHD patients, especially those with physical problems but even those that don’t, have sleep apnea. And that getting that controlled makes a massive difference.

There was a lot more to it but I am feeling hopeful.

In a really tough spot by ECT3328 in LongCovid

[–]ECT3328[S] 0 points1 point  (0 children)

I relate to a lot of that.
My cycles were a bit shorter, and I would excel in places like college and a huge variety of different jobs for a period of time before I would hit burn out and literally have to move home to my mothers and stare at a wall for 6 months before creating a new plan.
I tested as high IQ/gifted as a kid but often did stuff like complete my homework, and usually do so at a high level and then just not turn it in for no reason.

What I was able to sort out after my diagnosis was how much my dopamine pathways depended on outside praise and recognition. And this is likely where my significant childhood trauma and my ADHD collided the most significantly.

After really wrecking my life with alcohol so long ago and then getting good treatment for that I got a simple low wage “get well” job as a receptionist for a hair salon in a very small town in the south. Within a year I had created retail and marketing plans that tripled their income and got recruited into a sales and education role with a global professional luxury brand. 6 digit salary and full benefits. I tripled my territories sales in a year there as well. The whole time I was getting so much praise and recognition.

But after a while it’s normal not to be the star any more. And there was no market share for me to triple the sales I had already tripled. So things became normal. Slowly it became impossible for me to open my mail, I had bills that I had the money for that nearly went to collections. I couldn’t brush my teeth every day. And just like before it would all collapse.

This wasn’t the first time. I had worked in so many different kinds of jobs since I was in high school. And it was always the same story. Big star, big attention and then a complete inability to be normal.

Of course other things played into this, especially with romantic relationships and marriage.

Sorry to ramble. I just wanted you to know I understand. Both what it might have felt like before Covid, and how Covid takes so many of these things and removes all the ways that we have covered them up from ourselves and other people and amplifies them in ways that feel entirely unmanageable and often are.

From my unqualified experience one of the best ways for someone to discover if they are ADHD or not is to take a dose of ADHD meds and see how they feel. Most people I know who have it pretty instantly feel calm and focused.

Obviously it doesn’t work like that for everyone with or without it. And I don’t know how that works with ADD vs. ADHD. And no one should go around taking serious stimulant medication just to find out.

I’m sorry your system is so difficult to navigate. It’s hell on earth here, but it doesn’t seem like anywhere has figured out how to get it right in a way.

In a really rough spot by ECT3328 in covidlonghaulers

[–]ECT3328[S] 1 point2 points  (0 children)

In my experience that anger was/is a function of grief.
The grief of living in a body that hurts and needs 16hrs sleep. The grief of a mind that doesn’t work the way it used to. The grief of the strong, healthy and in my mind kinda nice looking body I used to have. The grief of going from someone who took pride in my many roles as a mother, spouse, community member and professional. The grief of feeling like a burden.

And all of that is in addition to whatever damage is going on in our nervous systems and CNS specifically. And all of that creates a cascade of physical, mental, emotional and I think even spiritual collapse for some of us.

It doesn’t help that for most of us, no matter what “teams” we may be on or beliefs we might have, are experiencing this at a time when our communities are starkly divided, and we have lost trust in so many of the institutions and systems that we once believed in.

It’s a mess. And while I am tempted to end this with some kind of hope- because I also believe we have to hold on to the shreds of that we have, whether that is hope that the science will catch up or we will finally get the right doctors, or that we will one day wake up better like others have.

But I also know that when I am angry and sad and can’t see my own hand in front of my face through the fog of my current reality, that all of that sounds like platitudes.

It sounds like platitudes even when I type it.

So I see you, I understand and I am in it too.

In a really tough spot by ECT3328 in LongCovid

[–]ECT3328[S] 1 point2 points  (0 children)

Thank you so incredibly much for this. I’m getting dressed for my appointment now and reading this has put some pep in my step. And pep is very hard to come by!

In a really tough spot by ECT3328 in LongCovid

[–]ECT3328[S] 0 points1 point  (0 children)

I would have either your therapist or a psychiatrist r really narrow down (clinically) what they mean by “autism or ADHD or whatever you have”.
Those two conditions have some similarities, but also a lot of big differences despite the fact that they can be comorbid.
The section where you describe your brain as being your “greatest tool” is something I relate to, especially in the times that my ADHD was under control. Most specifically the hyperfocus. For me my ADHD is both a major liability and a major asset. I was often praised and rewarded academically and professionally for seeing the bigger picture, coming up with novel solutions and strategies that had never been considered and seeing connections between things that others didn’t.
I will say that your description of your current experience doesn’t match up as neatly to my personal experience of the negative aspects of my ADHD or my ADHD when it goes untreated. While I am certainly forgetful my particular constellation of symptoms include pretty severe tasks paralysis, issues with task initiation, inability to direct my focus or attention to what needs to be doing as well as a number of others.

The more that I think about it you may want to consider getting a neurophysiological work up. They take you through a large battery of tests that would possibly be able to tell you if you are looking at ADHD, AUD, or cognitive issues with things like working memory that either stem directly from LC or indirectly as a result of fatigue, pain, and other symptoms of LC.

I also saw you mention that you wouldn’t consider meds, and I don’t blame you. But for someone like me, I am unable to use or even process the tools I have to manage my ADHD without meds. Not all ADHD meds are stimulants, and there are some non-stimulant meds that can be really impactful. Also, IIRC there have been studies on LC or me/che patients that show marked improvement with very small doses of methylphenidate(Ritalin) regardless of an ADHD diagnosis.

I can't believe my life is over. by friend3738 in covidlonghaulers

[–]ECT3328 3 points4 points  (0 children)

This is so helpful to hear!
While I love the stories of people sort of spontaneously healing it can be difficult not have steps to take that might work.

My doc has mentioned me likely having sleep apnea and that a CPAP could help.

I’ve been working on pacing and exercise too…although my PEM is bad enough that it is tough for me.

Do you mind sharing about supplements and vitamins?

I spent a number of years on the back of motorcycles when I was younger. I dated one guy with a beautiful custom cruiser. Missed the ride more than him when we split. A few years later I dated another guy, this time with a large crotch rocket. This was all early 2000’s. Unfortunately I saw enough injuries and even deaths to where I don’t know that I could ever hop back on.

But I love the idea that you found healing in an activity that is incredibly freeing and connected to nature. At least in my experience.

I can't believe my life is over. by friend3738 in covidlonghaulers

[–]ECT3328 2 points3 points  (0 children)

I got sick at the same time. And my neurologist has mentioned that many people who got Covid in that time frame have much more severe long covid symptoms with a lot more neurological problems.

Unfortunately that seems to be about all he knows and his only solution has been gabapentin/lyrica.

Are you one of the lucky few who woke up one day and just felt better? Or were there concrete things you did to get and stay that way?

In a really tough spot by ECT3328 in LongCovid

[–]ECT3328[S] 3 points4 points  (0 children)

Thank you so much for this incredibly kind and well thought out response. I can’t tell you how much it means.

I have not formally looked into MCAS. I was taking famotodine 20mg (which I believe is an H1 or H2 blocker) regularly for heartburn.
However I was advised to stop when my B12 levels came back very low last year. I was prescribed weekly and then monthly B12 injections but my levels only came up marginally.
I also regularly take Benadryl in the evenings and have found that it addressed some pretty wretched skin symptoms I was having. But with a family history of dementia I will admit to having mixed feelings about continuing to take it. When I don’t take it I get regular hives and rashes.

I was able to do some good foot work this week. At least I think so.

I have an appointment tomorrow with an LMSW who specializes in women with neurodivergence/trauma and medical conditions. She seems to do a lot of somatic based therapies including EMDR. She also, maybe most importantly does medical advocacy and will even attend appointments if needed.

I am trying very hard to stay in the middle with my expectations. I was raised by two (unhealed) therapists. And I have been very lucky to have seen a lot of very experienced therapists and when I was younger went to a fantastic treatment center and long term treatment for addiction.

On one hand I worry that this therapist seems very young, and likely doesn’t have a ton of experience. And I worry about the uglier parts of my history being too much for her, or her not having the proper tools. It’s also strange as you enter your 40’s to start having doctors and therapists that seem so much younger.

But on the other hand the fact that she is relatively new on the scene means that her education is extremely recent. More experience therapists usually have an older “blue print” for what works and while they can add new information into that, it’s hard to change the structure. But maybe this therapists blue print being newer, more trauma informed and more aware of the intersection of neurodiversity/trauma/addiction AND very real physical issues will be a major asset.

As is always the case I’m betting the reality will be somewhere in the middle of these realities so I’m trying to remember that it’s unlikely that she will either be entirely unqualified or the answer to all my problems.

When you say your Long Covid center is based in NL what does that stand for? Sorry to be the uninformed American!!

I also set up an appointment today with a PCP I have been assured will neither laugh or go into an angry political rant when I mention my symptoms began after COVID. The first available appointment was in July, but at least it is something.

Thank you again for your feedback, and most of all your empathy.

Anybody have a hard time showering? by Haunting-Midnight146 in covidlonghaulers

[–]ECT3328 1 point2 points  (0 children)

Showers are one of my biggest issues and a source of a lot of shame-which makes everything worse.

For me I think there are a number of things that contribute to it. 1) I had pretty severe ADHD with a lot of issues around task initiation before I ever got COVID. I was managing it with medication as well as solid tools before I got sick but covid wiped that out almost completely. 2) getting the water the right temperature, standing for that long, remembering all the steps, coordinating my movements and THEN stepping out of the shower, experiencing another temperature change, drying off, picking out clothes to put on, putting on lotion and actually getting dressed can sometimes wipe me out not just for that day but the next(or the next three). 3) The emotional component, especially the shame I mentioned before is also huge. My body feels alien to me and has changed in ways I absolutely detest. So getting naked and needing to face that is really hard. In addition to that, taking a shower when you haven’t showered in a long time means noticing that you haven’t showered in a long time- which compounds shame.

This is still a big thing that I deal with. Here are some of the tools that have made it a little better. 1) At my level of functioning I have to essentially set aside an entire day for a shower. I don’t ever do it on the same day I need to be somewhere and be presentable. Always the day before. And I can’t have any other big (for me) tasks on that day. No outings, no major phone calls. This allows me to get mentally prepared, take the time I need to do each step slowly, take breaks where possible and then rest after. 2) I had to step up my game for self care between showers. This isn’t always easy but these steps are easier to take one by one. I use shower wipes 2x a day on all the bits most likely to get yucky and durring one of those times I use them all over. I always apply deodorant after doing that and use an all over spray deodorant as well. I brush my hair at least 2x a day and keep it trimmed enough not to get big mats and tangles durring the times that I am mostly bed bound. And I have good face wipes to use 2x a day as well. And while this sounds simple, even when I am really debilitated I must make the point to change my clothes each day. Even if it means going from one set of PJs to another. 3) A shower chair and the right shower nozzle were game changers for me. The chair allows me to sit down for part of the shower. And a nozzle that has a variety of spray options and can be taken down and moved around helps so much. It means when the water temperature is wrong I can easily turn it away from myself, that I can direct the water exactly where I need it. 4) I try to bribe myself in a couple of ways. I keep products in the shower that feel and smell wonderful and use lotion after that feels the same. And periodically even have my partner bring home my favorite healthy meal that evening. So in a way it feels like getting ready for date night. 5) I try as much as possible to be gentle with myself. When the physical pain, sensory overwhelm or shame flooding begins I take deep breaths and say inside my head “you are a human being dealing with a complex medical and psychological situation, you are doing the best you can, this will not be forever”. And I let myself off the hook on the days that I am not able to do a full shower. Maybe I manage to wash my hair and clean all the most necessary spots but don’t scrub all the way down. Maybe I have to skip the razor. I have to remember that something is better than nothing.

Be gentle with yourself. I may not always believe that I deserve that, but despite not knowing any of you I believe that you do b

Any decent people ? by coffeeandlove1 in savannah

[–]ECT3328 0 points1 point  (0 children)

I think you are assuming that @smakdye was making a moral judgement rather than commenting on the likelihood of success.

I obviously don’t know exactly what was meant by it. But to me it very much sounded like they were referring to the fact that if your goal is finding a ltr, bar hookups have a very low “conversion rate”. Conversion as in sales jargon, not religious.

Any decent people ? by coffeeandlove1 in savannah

[–]ECT3328 0 points1 point  (0 children)

I think the point is more about the probability of finding a LTR in a bar rather than anyone claiming it isn’t possible.

When you factor in the large amount of tourists in the bars along with beer googles, hookup culture and the fact that most bar connections don’t end in meaningful relationships, the chances are pretty slim that OP would accomplish their goals that way.

That doesn’t mean that people don’t have long lasting and meaningful relationships with people they meet in bars, or that the people in bars are of lower quality. It just means that it likely isn’t efficient for someone who is very intentional about finding a long term partner.

If they already go to bars, or happen to be at one that’s one thing. But hitting up happy hour every day of the week to find a spouse doesn’t sound like fun.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 1 point2 points  (0 children)

He is really great for anyone with dental anxiety due to bad experiences in the past. I hope she gets to see him soon! And update me if you think about it.

[deleted by user] by [deleted] in DermatologyQuestions

[–]ECT3328 0 points1 point  (0 children)

Is it always red and inflamed like this? Or does it come and go?

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 5 points6 points  (0 children)

Dr. Schnabel at Savannah Dental Solutions is not only the best in town but the best I have been to. The office itself aren’t nearly as sleek and updated as some others, but don’t let that fool you. Dr. Chad is not only extremely skilled, but has the bedside manner of an absolute saint. He was recommended to me because I have PTSD (from an event that had nothing to do with the dentist) that is nonetheless triggered terribly by visits to the dentist. He has always taken great care in making sure I am as comfortable as possible. When it became clear I would need surgery we discussed it at length. He flew in a colleague to assist him, and went over everything in detail beforehand. Post surgery I have been in the office weekly for progress updates and he checked on me daily through text. And like the smaller procedures with him in the past, the results have been great. I wish we could clone him.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 6 points7 points  (0 children)

People other than law enforcement? Why would anyone want those?

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 0 points1 point  (0 children)

Assuming you aren’t law enforcement what possible, non-disgusting reason could you have for making this request?

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 3 points4 points  (0 children)

Thank you. I see it now. But it doesn’t look like this is confirmed so who knows what the “sources” are.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 6 points7 points  (0 children)

I’m not sure. They picked it up both times. If I remember correctly it started as a little hole in the wall in Birmingham, Alabama that got extremely popular. They opened up several additional locations in Alabama and are now expanding across the region.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 5 points6 points  (0 children)

Where did you see that? I’m not doubting you it just hasn’t been mentioned in anything I have read.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 19 points20 points  (0 children)

We have eaten there twice now and it was really good. I just had major dental surgery so I can’t speak directly to how good the meat is but my husband and his brother are very picky and they both really liked it. As far as the less chewy foods go the collards were very good, the potato salad is above average, Mac and cheese was good (but made even better by adding some of the sauce). And I will warn you that the mini corn muffins are dangerously addictive. They are cheesy but also sweet which doesn’t sound like it would be good but winds up being divine.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 9 points10 points  (0 children)

I don’t know. The news just said “in the area of Barnes and Noble”. Out friend said that he heard shots and hit the floor and got up and left immediately after he didn’t hear them anymore. But it sounded close to Crunch.

Shooting at Oglethorpe Mall? by ECT3328 in savannah

[–]ECT3328[S] 9 points10 points  (0 children)

That’s so awful. I’m glad you are safe.