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froger44
03-24-2011, 05:54 AM
I have exhaustion pretty much all the time but sometimes when it is the worst I feel funny in my head (kinda hard to explain) and feel disoriented. Does anyone else ever feel this way ?

Peridot20_Gem
03-24-2011, 07:18 AM
Hi Froger,

Exhaustion is past a joke in my book, i have this condition i'm living on 3 different inhalers aday i'm only 42 can't hardly breath when moving and it can make you panic, it actually sends your head into different states my nerves go on edge, you feel like your heads going through different phrases like you said hard to explain.
My lungs are swollen i saw my GP and apparentley the lupus causes them to swell so i looked even more lastnight, if you have chest pain or lung pain in your back, the lupus can course pleurisy in the lungs (which i've had twice and it's scarred my left lung) or can cause you lungs to fill of fluid, if you feel these symptoms also i suggest either seeing your GP or Rheumo.

Terri xxx

bunny28
03-24-2011, 09:30 AM
I feel this way right now. ;)

magistramarla
03-24-2011, 11:06 AM
Yes, many of us suffer from extreme fatigue and brain fog.
Hugs,
Marla

Peridot20_Gem
03-24-2011, 05:26 PM
I feel this way right now. ;)Hi Bunny,

I sympathize with you dearly as it's terrible to live with it day to day, no wonder we feel like we do.

Hugs Terri xxx

lovehubby
03-24-2011, 05:37 PM
Sometimes I start to load my dishwasher then something sidetracks me and I start to do something else then before you know it I see the dishwasher door open and realize I never finished that task first on a really bad day I might have three diff. things going on because I forgot what I was doing the first time hope this made since to you LOL

froger44
03-24-2011, 07:09 PM
Thank you all for your input. This has to be the most frustrating thing. I am such an independent person and its hard because this so controls me. About the time I think oh a good day it hits again. I feel like a big cry baby I'm so emotional when I get so exhausted. Sorry for rambling just needed to vent.

ruziska
03-24-2011, 08:57 PM
You figure out how to pace yourself. It sucks! I used to have " hell hath no fury" all day cleaning sprees. Now I pick 2 tasks a day and if I get one done then I am happy. Adapt and overcome. I'm learning to work with lupus and stop fighting it. Do what you can when you can. Carry a note device be it iPod , pen and paper or whatever to help with the brain fog. Exhaustion is part of lupus life but there are a lot of things to help make life easier. Make your home as ergonomic as possible. Invest in good tools. Where comfortable clothing. Never be afraid to ask for help and never be afraid to say "no". Most importantly is to make time for yourself!

magistramarla
03-24-2011, 09:19 PM
Yes, I truly understand.
I've always been a "type A" personality. I graduated from HS at 16, went to college on a full scholarship, graduated Summa Cum Laude and was teaching at 20, had five children by the time I was 29, supported my husband's military career, worked at different interesting jobs at each of the places we've lived, served on many boards of spouses' clubs,helped my daughters with my grandsons, helped to open a brand new HS and designed the Latin curriculum, where I taught for 7 years, etc. I've always been very good at juggling lots of jobs and doing them all very well.
In the last few years, I've had to learn to slow down and pay attention to what my body has been telling me. It is very, very frustrating! My mind still says "Go, go, go!" but my body says "Not today!"
I'm just glad that I packed so much in while I was young and able. Now I can sit back and say "I'm retired."
Hugs,
Marla

rob
03-25-2011, 03:09 AM
Hi Froger44,

I understand how you feel. Like Marla, I too graduated from high school early and got a really nice head start on college, and in turn, life, and a career. I'm very much a type A personality as well. It's been very difficult losing much of the gift that allowed me to do these things. I used to be called a walking encyclopedia, and now sometimes I get lost on the way home from the grocery store and I forget how to spell even the simplest of words on my bad days.

Cognitive Dysfunction, AKA-Brainfog is one of the most frustrating things we have to deal with. I try to take it on stride, and adapt. And I try to find the humor in some of it, like the time I put Preparation H on my toothbrush instead of toothpaste...

You are definitely not alone,

Rob

bunny28
03-25-2011, 04:45 AM
Thank you all for your input. This has to be the most frustrating thing. I am such an independent person and its hard because this so controls me. About the time I think oh a good day it hits again. I feel like a big cry baby I'm so emotional when I get so exhausted. Sorry for rambling just needed to vent.


Oh froger, I could have posted this exactly. YOu are not alone...and vent away. I am learning it helps. Take care.

steve.b
03-25-2011, 05:42 AM
Cognitive Dysfunction, AKA-Brainfog is one of the most frustrating things we have to deal with. I try to take it on stride, and adapt. And I try to find the humor in some of it, like the time I put Preparation H on my toothbrush instead of toothpaste...



Rob

is this one for the brain fog thread ???????????

tgal
03-25-2011, 05:53 AM
is this one for the brain fog thread ???????????

Yes. That is brain fog. People have different amounts of fog but the majority of us get that. Mine became so bad that I was sent for not 1 but 2 neuro physch tests. I think I would have rather just gone on knowing what I had but never seeing the results of that test. There is something about seeing "who you have become" on paper. It was really hard on me.

Anyway, back to doing some things around the house

rob
03-25-2011, 10:21 AM
is this one for the brain fog thread ???????????

It's funny you mentioned that. The "Prep-H Incident", as it's come to be known, is what gave me the idea to start the You Know You Have Brainfog When thread in the first place!

magistramarla
03-25-2011, 10:43 PM
Hi Froger44,
Cognitive Dysfunction, AKA-Brainfog is one of the most frustrating things we have to deal with. I try to take it on stride, and adapt. And I try to find the humor in some of it, like the time I put Preparation H on my toothbrush instead of toothpaste...

You are definitely not alone,

Rob
Oh no Rob!
I've done this too, but for me it was a tube of Monostat cream that my daughter left lying on the bathroom counter.
I've warned Jeff NEVER to leave his Preparation H lying around.
Hugs,
Marla

Peridot20_Gem
03-26-2011, 05:48 PM
Thank you all for your input. This has to be the most frustrating thing. I am such an independent person and its hard because this so controls me. About the time I think oh a good day it hits again. I feel like a big cry baby I'm so emotional when I get so exhausted. Sorry for rambling just needed to vent.Never feel like a big baby because if your one, then your doubles typing as i cry now more than i've ever done.
It can get flustrating especially i find if your concentration is working opposite to how you want it to and like a good many of us your not on your own where it's controlling you, it's all down mastering it and i'm not to good on that score which i'll admit.

Terri xxx

serand4
03-26-2011, 07:04 PM
I think I posted something very similar to this when I first was diagnosed with Lupus. I couldn't believe a human being could be so tired and still be alive! Eventually I found that I will have the occasional few days where I can get something done but then it's back to the couch and rescheduling all my appointments because there's no way I can get anywhere in the state I'm in. Last night I had a case of brain fog so bad that I'm sure the person I was talking with thought I was drunk. I was secretly horrified to be caught like that but what are you going to do? I think little by little I'm growing out of denial and into acceptance. I'm still going to fight like hec to get better and find a better quality of life but in the meantime, I have to just tell people, "well, there's that Lupus again!" God bless and hang out here when you need a lift!

Peridot20_Gem
03-27-2011, 04:59 PM
Hi Susan,
Your on about getting things done and it's back to the couch again but when your brain goes foggy does it affect your speach as it makes mine slurred sometimes and my sentences sound like they're coming out back to front so weird.
It's pointless worrying about what other's think i know it's hard to how we all used to be but if you ever do find ignorant people out there, well to me they ah worth bothering with.

You'll work your way around it mate, i've had to although sometimes i do get really flustrated. xxx

slim
03-27-2011, 09:01 PM
Hi frogger

Funny in your head like pressure building in your head and you litteraly have to stop and wait till it pass. That is what happens to me im not sure if that is what you mean or something totally different like brain fog. Hoped this help. Slim

supermodel
03-28-2011, 04:52 PM
I get these "flurry" like feelings in my head. Sorry this the best way I can describe them. They are sort of like dizzy spells that occur on and off all day especially when I'm flaring.

craftkeeper
03-28-2011, 06:35 PM
I use to worry about my blood pressure when i would have these weird feelings in my head..At the time my blood pressure was elevated due to stress and i took Medication for it. After awhile i went off the med and went on garlic and my blood pressure has been perfect for over a year now, but i still get this full feeling in my head at times and my ears feel full and stuffy.

GoodDog
03-28-2011, 06:52 PM
I was a type A personality too and always felt I could depend on my brain for anything that happened in life. If I didn't know something I would simply learn it...whatever I needed to do I just did it. I've lost my identity and sometimes I feel worthless, especially when I see a new doctor. I've become my biggest fear, alone, poor and sick. But then I interact with someone here, like you Rob, and remember all the things I used to do and be and it reminds me that I'll always be that person and I'll always have those memories. Lupus can't take that away.

ADDED: I just realized that I'm an AlleyCat now!!! That's been my nickname since I was 5 years old. LOL

Allie

froger44
03-28-2011, 07:09 PM
Sorry it has taken me so long to get back on her and say thanks for all the replies. Friday we rushed my husband to the ER with chest pains and he is still in the Hospital. This is were all this just makes me mad. Yesterday I came home and cleaned for way to many hours, trying to get everything ready for him to come home and I ended up flaring with a beat red rash across my cheeks and nose and total exhaustion. Tonight they transferred him to a bigger hospital for heart cath tomorrow and I cant even go stay the night with him. He understands and insisted I come home (its an hour drive) but it still bothers me. Maybe in time I will adjust.

tgal
03-28-2011, 07:32 PM
Sorry it has taken me so long to get back on her and say thanks for all the replies. Friday we rushed my husband to the ER with chest pains and he is still in the Hospital. This is were all this just makes me mad. Yesterday I came home and cleaned for way to many hours, trying to get everything ready for him to come home and I ended up flaring with a beat red rash across my cheeks and nose and total exhaustion. Tonight they transferred him to a bigger hospital for heart cath tomorrow and I cant even go stay the night with him. He understands and insisted I come home (its an hour drive) but it still bothers me. Maybe in time I will adjust.


Oh honey I am so sorry! Sometimes it just seems like if it isn't one thing it is another! I do hope everything goes well tomorrow for your husband and for you! Please know that we are all here for you as you go through this difficult time. {{{{HUGS}}}}

steve.b
03-28-2011, 08:39 PM
i to feel for you.
i will be thinking of you and your husband in your time of need.
hope this message finds him slowely recovering.

serand4
03-29-2011, 06:42 PM
I get the dizzy spells throughout the day. They seem even more frequent now that I'm on Cellcept. As far as talking, sometimes I just stop mid-sentence because I have no idea what I was just talking about! Now I laugh about it - especially if I'm with people who know the situation. We just go on to another topic. My mom has started just telling me what she has to say and kind of signing off after that. Once in awhile I have to remind her I have things to say, too. I don't always forget!