I Can't Do This Again...

[firewatcher]

Hi all, just got back from my children's new school orientation. First there was an assembly in a warm gymnasium, then two classrooms of standing and listening to teachers...I ended up sitting on the floor. The tunnel-vision started creeping in, my head started to hurt from trying to concentrate, and I am still shaking: all of this is while on meds! Last year all "this" started the week before school started ( one year to the day today ) I missed all last year and let one of my boys slide backward in school due to brainfog and fatigue. I am just now getting caught up on all the work that I had to put off from nine months of an unmedicated tremor: I thought I was doing well, until today. I don't want to lose another year of my kids' lives, I want to be involved again! I am just stressing out, I know. Somebody, please talk me down.

Jennifer

[MightyMouse]

Have you thought about investing in a cooling vest? Also, if you know there will be standing for a while, you probably should talk to your doctor about whether or not support hose might help you tolerate being upright.

Lastly, I'm moving this to the dysautonomia discussion as it's related to your ability to cope with your illness and not "chit chat".

Nina

[firewatcher]

I know this sounds like a moment of weakness, but I was not expecting a single afternoon to start this up again. I have several concerns (one son's failing math scores and the other's anaphylactic food allergy all on top of a brand new school) that are not health related; but with my upcoming trip to Vandy in November I am going to have to come off all my meds. My Primary doc wants me to titrate off the Klonopin over 4-6 weeks and be off the Inderal for 2 weeks before the testing. I am back to peeing all the time that I am upright since the Endo wants me off the dDAVP, and he also wants me to try clomiphene and metformin to try and jump-start my ovaries into functioning again (which should bring back the migraines.) Can't I have some boredom PLEASE?!! I am not prone to anxiety, but today has me worried.

[MightyMouse]

Um, I don't know what to say other than any day with a hot gymnasium would make me uber symptomatic. It sounds like you've had periods of less or no symptoms? I swear I think that's harder for folks who aren't sick all the time b/c the good times can kind of taunt you into thinking you've recovered, and then when symptoms show up again, it can be so devastating. Just my take on that dynamic--I'm symptomatic every day to some extent. Today happens to be a very, very bad day for me, although I managed to get a quick shower.

Nina

[firewatcher]

Less symptoms? Yes. I still have a daily unilateral headache and fatigue, and my hands and feet still tingle and go numb; but the tremor and HR surge were gone. The BP gets narrow if I don't drink enough despite what the endo said about the DI. I've tried not drinking as much, but that makes everything worse and I start to lose weight (am I the only one who weighs less at the end of the day than after breakfast?) I guess the stress, both emotional and physical were just too much today.

[pat57]

There are times when you need to say "I can't". If you are not clear about what you can and cannot do- no one else we be either.

Teachers will accommodate/support you when they see its necessary.

You have no choice but to prioritize. Failure to do so will make you sicker and then you will even be capable of less.

There is a book out called " the wisdom of no escape". You would to wise to know what you can and can't do.

good luck

[flop]

Trying to "hold up" in public when you are feeling really ill is a dreadful experience. Hot gymnasiums would make me feel horrible too. I make sure that I never have to stand in public meetings etc, if I am not in my wheelchair I will take my seat-cane so I can perch but if I needed to stand for any length of time I either help myself to a chair / sit on a table or directly say to whoever is in charge "I have a health problem and I need to sit down, could someone find me a chair please?". I have never had any problems when trying this direct approach, I don't explain why I need to sit (but I would explain POTS if someone asked me). It is often easier if you either arrive early so you can ask for a chair before everyone else arrives or phone up in advance and make your needs known. Admitting we have needs is difficult for some but usually people are pleased to help when they know how.

As someone else has said it is difficult to know your own limitations, especially when your symptoms fluctuate. If I rest a lot I can appear to be totally healthy but if I stress my body then my symptoms will show up again. Only experience will teach you what your body will tolerate and what will make you ill, then you can take steps to minimize the excess standing/heat to let your body cope better.

Flop

[firewatcher]

First day down! I am exhausted. I spent three hours at work today (really the first day since the boys' summer break) came home for lunch, worked for an hour at home, picked them both up, took one to tutoring, then to dinner...did I mention that I am exhausted. Living did not seem this hard before I know that I am going to wear out fast at this rate, but it is the least that I can do. How can you do less than that?

[Maxine]

Jennifer,

Just wanted to send you a HUG, and I hope you can function well this year, and future years==

I was lucky, when my son was school age, I was pretty normal in my function, and beta blockers worked for the tachycardia.

Find ways to keep yourself cool, even if you just take a little ice in a plastic bag and sit it on the back of your head and neck. I've done this in a pinch. Nina's suggestion of a cooling vest is a great idea.

I'll have to check that out too---

Everyone has offered great suggestions.

Take care of yourself, and good luck with everything.

PACE YOURSELF-----one day at a time.

Maxine :0)