Can someone explain to me the difference between a real flare, a pseudo flare, etc? I'm having trouble finding something that breaks it down into a neat box, but maybe no such thing exists?
I know I'm still only in the probable phase, but I'm still gonna try to learn anyway. Back then, I never learned how to manage the most debilitating symptoms. I only focused on making sense of it all and freaked out in anxiety.
Is a flare like when old symptoms come back that were gone for awhile? Or is it more of a worsening of daily symptoms?
How does heat intolerance tie into this? For example, when I go outside in the heat, in 15-20 minutes . . . I am fatigued and drunk like. I am weak, I slur my words, I bump into things because I can't walk properly, feel pain, feel tingly, muscle spasms and fasciculations, etc. When I put ice packs on and my body cools down, I feel a ton better, but the fatigue and pain does not go away completely. Then I feel stiff, (my fatigue and pain gets worse midday and gets worse into the night). So, it seems the heat makes those two things a whole lot worse and then brings out other symptoms. Is that a pseudo thing?
Also, does anyone else feel pretty great in the morning until about noon, sometimes plus and hour or two?
What can someone do to manage the fatigue aside from eating right, hydrating, exercising, and staying cool? I'm finding it very difficult at work right now because I have to do a lot of spread sheets. I do have cognitive problems from the lesions so when the fatigue hits, everything is much worse. I try my best to get the majority of my spreadsheets worked on in the morning when I get into work, but if I have a lot of other tasks to do that day, I have to put it off. When the fatigue hits, it's almost impossible to do basic math (I know that Excel does calculations, but I also have to investigate things and figure things out), to problem solve . . . a lot of mistakes get made.
It helps if I have some time before the deadline to complete them because I can go home and come back in the morning when I feel great again to finish. It amazes me when I do that, how there are many things in the spreadsheet that I thought made sense that make no sense at all the next day. The problem compounds when the deadline is approaching. Then stress gets added to the equation and it becomes a nightmare. Sometimes I sit there going, "omgomgomgomg I have to get this done. Please brain work, please. I have to get up to go hide in the bathroom with my eyes closed to cope."
What happens to me with the cognitive issues I have (they are made worse when I'm really fatigued):
-I go on a trail of investigating some numbers to try and figure out why this invoice doesn't match this one, and to tie things into a spreadsheet, my brain stops half way through and I can't figure out where I was going with it. Then sometimes when I can remember where I started, I can't remember why I ever thought that was a good train of thought to go down in the first place.
-I complete a task, send an email out and cc people to show them I've completed it because that's what I'm supposed to do for specific things. Then I forget that I've done that task and when I see someone later, I'll say, "I'm so sorry. I've been meaning to complete such and such task. I'll get to it after such and such time" only to have them look at me and say, "Jami, you sent an email about that already. Remember you said you were going to print that out and attach it to the request and leave it on the box by your desk? Well, it's right here. You did that already." And I'm standing there completely like omg . . .
-I get a call to book the conference room. The person says, "I'm calling to confirm that I have the conference room tomorrow at 10:30-11:30". I open the schedule look at it and say, "That's so strange. Today from 10:30-11:30 so and so has it. I don't remember getting a call from you to book that today." . . . . Then they reply, "Well, that's why I asked to confirm that I have it tomorrow, not today."
-I'm working on a task and the phone rings/someone comes to my desk needing something. When I go back to my task, I can't for the life of me remember where I was. (I've found a good way to manage this a couple of days ago. I decided to say "one moment" to the person, write it down where I was and then look up and ask them how I can help. I haven't found a way to manage this when the phone rings or when a client comes in because I can't tell them to wait a minute)
-Someone tells me to let them know when so and so comes in to the office. I tell them OK, but then when that person comes in, I completely forget that they called to request that.
-Someone tells me they are going somewhere and then I forget that they told me that until I'm texting or calling to see why they aren't here or there to find out that they already told me.
-I call to ask people the same questions over and over even though I write it down, but then I can't remember where the thing went that I wrote it down on.
-Every single Friday, we have pizza delivered for the office. I am responsible for ordering. I'm supposed to order pizza and salads, have them made a certain way, delivered by a certain time, and if it is also ordered for our other location, I'm supposed to tell them to bring both receipts to my locations with that driver. I'm also responsible for signing the receipt and calculating the tip. This past Friday, I completely forgot to order the salad, I realized that the past three weeks, I forgot to have them deliver both receipts to me. I also found the receipt from the previous week under the cover of my printer when I made a copy of it for the file, and I mixed up two of the numbers in the total on the receipt. Thankfully, it was only in the change and not the dollar amount so my boss was unconcerned, but Geezus!
These are just some examples of what is going on. I'm trying very hard to manage this stuff, but I'm wondering if there is some kind of a doctor or someone I could see to help me with the memory stuff? I am not completely losing memory because when I'm reminded, I realize that I did know that at some point. It's like the memory doesn't come out when it needs to. It's like it gets stuck somewhere.
Anyway, now I'm rambling. I guess I'm just wondering if anyone can relate and what you do to manage this stuff. Thanks for reading such a long post.
I know I'm still only in the probable phase, but I'm still gonna try to learn anyway. Back then, I never learned how to manage the most debilitating symptoms. I only focused on making sense of it all and freaked out in anxiety.
Is a flare like when old symptoms come back that were gone for awhile? Or is it more of a worsening of daily symptoms?
How does heat intolerance tie into this? For example, when I go outside in the heat, in 15-20 minutes . . . I am fatigued and drunk like. I am weak, I slur my words, I bump into things because I can't walk properly, feel pain, feel tingly, muscle spasms and fasciculations, etc. When I put ice packs on and my body cools down, I feel a ton better, but the fatigue and pain does not go away completely. Then I feel stiff, (my fatigue and pain gets worse midday and gets worse into the night). So, it seems the heat makes those two things a whole lot worse and then brings out other symptoms. Is that a pseudo thing?
Also, does anyone else feel pretty great in the morning until about noon, sometimes plus and hour or two?
What can someone do to manage the fatigue aside from eating right, hydrating, exercising, and staying cool? I'm finding it very difficult at work right now because I have to do a lot of spread sheets. I do have cognitive problems from the lesions so when the fatigue hits, everything is much worse. I try my best to get the majority of my spreadsheets worked on in the morning when I get into work, but if I have a lot of other tasks to do that day, I have to put it off. When the fatigue hits, it's almost impossible to do basic math (I know that Excel does calculations, but I also have to investigate things and figure things out), to problem solve . . . a lot of mistakes get made.
It helps if I have some time before the deadline to complete them because I can go home and come back in the morning when I feel great again to finish. It amazes me when I do that, how there are many things in the spreadsheet that I thought made sense that make no sense at all the next day. The problem compounds when the deadline is approaching. Then stress gets added to the equation and it becomes a nightmare. Sometimes I sit there going, "omgomgomgomg I have to get this done. Please brain work, please. I have to get up to go hide in the bathroom with my eyes closed to cope."
What happens to me with the cognitive issues I have (they are made worse when I'm really fatigued):
-I go on a trail of investigating some numbers to try and figure out why this invoice doesn't match this one, and to tie things into a spreadsheet, my brain stops half way through and I can't figure out where I was going with it. Then sometimes when I can remember where I started, I can't remember why I ever thought that was a good train of thought to go down in the first place.
-I complete a task, send an email out and cc people to show them I've completed it because that's what I'm supposed to do for specific things. Then I forget that I've done that task and when I see someone later, I'll say, "I'm so sorry. I've been meaning to complete such and such task. I'll get to it after such and such time" only to have them look at me and say, "Jami, you sent an email about that already. Remember you said you were going to print that out and attach it to the request and leave it on the box by your desk? Well, it's right here. You did that already." And I'm standing there completely like omg . . .
-I get a call to book the conference room. The person says, "I'm calling to confirm that I have the conference room tomorrow at 10:30-11:30". I open the schedule look at it and say, "That's so strange. Today from 10:30-11:30 so and so has it. I don't remember getting a call from you to book that today." . . . . Then they reply, "Well, that's why I asked to confirm that I have it tomorrow, not today."
-I'm working on a task and the phone rings/someone comes to my desk needing something. When I go back to my task, I can't for the life of me remember where I was. (I've found a good way to manage this a couple of days ago. I decided to say "one moment" to the person, write it down where I was and then look up and ask them how I can help. I haven't found a way to manage this when the phone rings or when a client comes in because I can't tell them to wait a minute)
-Someone tells me to let them know when so and so comes in to the office. I tell them OK, but then when that person comes in, I completely forget that they called to request that.
-Someone tells me they are going somewhere and then I forget that they told me that until I'm texting or calling to see why they aren't here or there to find out that they already told me.
-I call to ask people the same questions over and over even though I write it down, but then I can't remember where the thing went that I wrote it down on.
-Every single Friday, we have pizza delivered for the office. I am responsible for ordering. I'm supposed to order pizza and salads, have them made a certain way, delivered by a certain time, and if it is also ordered for our other location, I'm supposed to tell them to bring both receipts to my locations with that driver. I'm also responsible for signing the receipt and calculating the tip. This past Friday, I completely forgot to order the salad, I realized that the past three weeks, I forgot to have them deliver both receipts to me. I also found the receipt from the previous week under the cover of my printer when I made a copy of it for the file, and I mixed up two of the numbers in the total on the receipt. Thankfully, it was only in the change and not the dollar amount so my boss was unconcerned, but Geezus!
These are just some examples of what is going on. I'm trying very hard to manage this stuff, but I'm wondering if there is some kind of a doctor or someone I could see to help me with the memory stuff? I am not completely losing memory because when I'm reminded, I realize that I did know that at some point. It's like the memory doesn't come out when it needs to. It's like it gets stuck somewhere.
Anyway, now I'm rambling. I guess I'm just wondering if anyone can relate and what you do to manage this stuff. Thanks for reading such a long post.
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