I Need To Vent!

[Elfie]

Hey everyone,

I haven't been on in awhile (I read, but rarely post). After getting out of a bad relationship this past fall I have been dealing with less stress and managing my illness better. However, some things in my life have recently caused my stress level to shoot back up and have really knocked me out. I keep thinking about the past 6 months and wondering what I was doing differently. I thought I had been doing so much better, but looking back I realized that it was because I was pretty much doing nothing but going to school and microwaving things. How sad!

Anyway, I'm really struggling with this increase in symptoms. I hate this so much mostly because of mental symptoms. Once I stand up it is like my personality changes. I don't feel like myself, don't think like myself, don't find things funny, do things I would never otherwise do, ect. Brain fog is the worst because I am an academic and even outside of those situations I rarely have anyone that can help me make important decisions. Not thinking clearly is like torture. It is bad enough not being able to do all the physical and spontaneous things that I used to enjoy (adventure sports, physical job, ect.) that were a big part of who I was, but without my mind working the way it should I'm just miserable. At this point I just wish I never had to stand up!

Does anyone else feel the same way? Any ideas for coping?

Thanks for listening you all!

[Notgivinup]

YES, I can totally relate. You said:

I rarely have anyone that can help me make important decisions. Not thinking clearly is like torture

Torture it is. All day long. I have to lie down to do bills, and some days even that only helps a little. I don't know. I just started taking iron, and got a rowing machine today. I've always hated to exercise, but maybe it'll help. I'll keep ya all posted. Wish I had some magic words.

[spaceorca]

Elfie, I'm sorry you're feeling so stressed! Autonomic dysfunction is such a disabling disease that I don't know how any patients cope as well as they do. I don't have any magic coping strategies, but my heart is with you! Debby

[lieze]

I'm having a much similar wave of what the heck over my way.

I just don't know what to think.

I hope you feel better soon.

[erickamcc0523]

Elfie, I can truly understand where you are coming from. I have had POTS symptoms since I can remember, but after a surgery in Nov 09, everything has gone haywire. I am, too, a student... I took a semester break after my first year of college that ended up being 4 years long, a very big regret, but at least now I'm more focused, or am attempting to be as much as the brain fog will let me, in classes, and I have a purpose. I am a music major (I want a degree in Sacred Music, specializing in Gregorian Chant), and what kills me is that I change my major about a month before my surgery. I took an organ class because I needed a couple more hours, and ended up falling in love with it. Before the surgery, I could play for 3 hours straight (with a few stretch breaks here an there), and completely not realize that I stayed that long. Now, if I can play for an hour or so at a time, it's a bloody miracle that I not faint. Usually at that point, I am shaking, in the early stages of presyncope, and in screaming pain, especially in my neck and back (and sometimes all the way up into my head), and scared to death about going down the narrow 1920's era steps from the choir loft into the first level. There have been times that I've scooted down them on my butt.

I also really understand the brain fog for other classes. I am thinking about minoring in sociology or cultural anthropology, as those subjects have always fascinated me since I was the strange kid at 7 who read about it in the encyclopedia for the first time because I preferred to stay inside and read to going outside to play. Now, I have trouble even understanding the directions for something that's supposed to be idiot-proof. One way I cope with this is laugh at it. I can't control what my body does, but I can control how I react to it. And I can only see two choices: laugh at it or cry at it. For the most part, I laugh at it, although a good cry every so often can be theraputic.

I also ask a few really good friends (maybe 2 or 3 of them) to do some things for me, especially if it involves picking things up from the floor, or any other POTS unfriendly moves. I follow the motto of "Do what I can when I can, and if I can't, it's OK". I come here and vent, and I also will talk my priest friend. He commiserates with me and lets me vent for awhile, but then after that, he reminds me that I'm still alive, and even if I couldn't live as fully as most, I need to live as fully as I personally can. Throwing myself into as many other non-health related activities as I can. For me, it's music and Church, but as much as possible, taking a break, even a mental one, from illness is an important time of recharging from our already defective batteries.

The most important advise I can give is "one day at a time". I know it's easy to start worrying and freaking about the future, especially if something is degerative, but... to paraphrase one of my favorite scripture passages, who by worrying can add another inch to their height. Again, it's another recognizing what I am and am not in control of.

Again, I read your post and I have an understanding of how you feel. Post and vent here anytime you need, and I hope you are better able to cope with everything in the future.

[ramakentesh]

gees I can also relate. Ive been in the process of buying a house with three other people but everyone expected me to make all the decisions and I think I managed to make lots of mistakes precisely because i was doing this while trying to work full time and other committments - and now that things are going pear shaped the stress of it is getting to me.

With POTS its like this cycle - cant think straight, make mistakes, stress about it, POTS gets worse, and back to the start for me.

[blhorn]

Elfie, I also can totally relate. I alway concidered my inteligence to be my one real asset, it has been so disturbing to have that taken from me. I don't have any ideas of coping though...but my heart goes out to you and everyone else who have this problem.

[firewatcher]

(((((((((((((Elfie))))))))))))))))

I can totally relate. I've reached into a hot oven with no oven mitts, nearly had several traffic accidents and sent my son into anaphylactic shock------all during bad POTS episodes. Once I took one of those silly, online IQ tests; I had taken it before (on a good day) and scored my normal, but then I took it on a POTSy/brainfog day and the score was cut in half! Lack of bloodflow is a danger to you and your decisions. I try to write things down (when I can think clearly) when I'm in a bad POTS hole, that way I just give that to whomever I have to talk to. Thank goodness I don't have to do public speaking! I'd be a moron......

[sue1234]

Can definitely empathize with you! I know we seem to have our ups and downs, phyically and emotionally, and it's tough to be in the lows. Just remember, we all are here to listen, and someone is bound to have something that helped them with a certain issue. That kind of first-hand support is priceless.

[Noreen]

Anyway, I'm really struggling with this increase in symptoms. I hate this so much mostly because of mental symptoms. Once I stand up it is like my personality changes. I don't feel like myself, don't think like myself, don't find things funny, do things I would never otherwise do, ect. Brain fog is the worst because I am an academic and even outside of those situations I rarely have anyone that can help me make important decisions. Not thinking clearly is like torture. It is bad enough not being able to do all the physical and spontaneous things that I used to enjoy (adventure sports, physical job, ect.) that were a big part of who I was, but without my mind working the way it should I'm just miserable. At this point I just wish I never had to stand up!

{{Effie}}}

I so understand - I call it the Algernon Syndrome - (as an academic I am sure you remember the short story and play "Flowers for Algernon"). It can be so hard knowing that if you stand up you may not be able to remember that idea, if you have to go to the bathroom, your brain may have to reboot when you lay back down. I feel like I lose half my IQ points within 15 minutes especially if the temp is above 72 degrees.

I'm sorry I have no great idea to help but I can offer plenty of understanding. Before I found this forum, I kept wondering whether I should be tested for alzheimer's yet one sees docs and you're sitting down and they don't quite get it.

[jamernay]

Erika,

I was a music major too and had to take some time off as well. I had to get the requirements for my major changed as singing (vocal ed major) made my vitals go haywire and caused syncope. Conducting did the same thing. I can still play piano, but the brain fog has caused me to digress in my abilities. Keep at it, you can do it!!! I finally graduated with much help after 10 years (a year break in there). Like you, music and church are the best therapy in my life!

Academically, I went from a 4.0 to barely graduating due to brain fog, and like you all, all I did was lay in bed and go to class. I understand how isolating, lonely and depressing it can be. Be proud of those little accomplishments - I made it to my classes, I finished my paper, etc. Even those things, to someone with dysautonomia are a big deal.

I would recommend to all of you in school to talk to the disabilities coordinator at your campus and see if they can make sure your classes are handicap accessible (no stairs) and see if they can help work with your profs to understand and accommodate your condition. Some will, some won't, but having an advocate really helps.

Good luck!

Jamie

[Elfie]

Thanks everybody!

I am actually really sorry to see this is such a common feeling among all of us, because in my opinion it ***** and nobody should have to go through it! It is also so frustrating that no one has been really able to find a way of dealing with these symptoms. I agree with all of those that said I just have to keep a good attitude. I think Algernon Syndrome is a very apt description of the problem- but a little sad . . . Flowers for Algernon always made me sad. I really relate to those of you that are having problems doing mental tasks like paying bills, buying a house, going to school, ect.

I guess I am just feeling a little lost. I recently moved 8hrs back to my hometown and am living with my parents again to continue my education. Growing up I was very involved in running the household and I am having difficulty making those in my family understand that I can't be "the" major homemaker, work, go to school, and take care of my health at the same time. I'm also having problems finding a doc that is willing to learn about POTs to treat me beyond giving me one blood-pressure raising drug and telling me that that is as good as it gets. I'm also struggling to reconnect with old friends, especially since I haven't seen most of them since my diagnosis. That and finding work!

Obviously I need my wits about me right now, along with my patience! (stands up) Oh no, where has my patience gone? I seem to have lost my patience--- and my ability to do simple mental math, and remember my name. LOL

I really appreciate all the support and hopefully someone here finds the magical solution to this whole "brain drain" situation!