Just aggravated

General
1

Ok, so this is going to be a complaining message... sorry, but need to get it out somewhere. :)

This crap sucks! I am so sick of being sick. It has been since July that I felt like myself. I can pinpoint it to 4th of July weekend, cause that was the last truly fun times I have had... going to Daytona for the races, being able to walk pain free, feeling 'normal', etc. It was amazing, and feels like a distant memory.

Now I feel like crap all the time, it just varies on exactly how crappy I feel that day.... pain, pain, pain! Over the pain. But the worse of everything has to be the cognitive loss/weirdness. That fuzzy feeling... I hate it. Not only is it making my school work difficult to keep up with (something I have never had problems with in my life... I am actually an honor student at USF right now, with a 3.6GPA, but after this semester, who knows), but no one seems to understand. Don't get me wrong, I am thrilled they don't understand, so they don't experience this, but it is so frustrating. I feel like not only is my body physically going against me, but my brain is shutting down when it wants too.

"You can do anything you put your mind too." "Other people are worse off."

Ugh. I wish just thinking I can do it, would make me able to do it....and I know other people have it worse off, but this is bad too. Just because you can only physically see my joints swollen, that is the worse of it to them. And if I don't need my cane that day, I must be all better, and need to stop complaining. Well, then stop asking me how I feel, and I won't 'complain.' It's like they want to know, but then think I am exaggerating or making stuff up, I guess. Like I want to feel and be like this. I miss my life. I miss working. I miss not feeling like crap everyday. I miss being able to do my homework quickly. I miss not having to take 5 to 8 pills a day. I just miss being able to be 28 yrs old.... :(

Thanks for letting me vent.

2

Venting is a very good thing. I hope you are feeling better soon.

3

I know how you feel, especially when I was younger and in school. I would feel so rotten it was all I could do to study and get thru each day, I didn't even know I had Lupus then, doctors treated me like I was a hypochondriac, which only made it worse so I was really beginning to think I was totally crazy. Finally at 23 after suffering around 8 years like that a Psychiatrist ask if she could run some tests, and I said sure. She discovered my high ANA, so more tests more Drs. and finally a diagnosis at 26. There were days I felt so bad I thought I was going to die before they knew what was wrong with me. It was so hard to study and go to class, etc. I look back now and am amazed I made as good of grades as I did. I imagine it would have been even better if I had felt half-way decent. Even now at 40, there are horrible days, and days looking at pills I have to take disgusts me terribly. But I really appreciate the good days. Normal days are a lot more common now so there is hope, keep pressing on.

4

Venting is all part of the process. In a very real way we are mourning the loss of our old selves ( I was carrying a 4.0 my first 4 years...the next semester I ended up dropping all but one class, in which I got a "c". I was humiliated and at that time decided that college was not going to be in my future. As someone that loves education, this was a devastating blow to both my academic career and my self-esteem.

As to the "lupus fog" is can be much more than just a bit of ditziness. Using your search, I posted an article of lupus psychosis. This is "lupus fog' on steroids. It's worth the read so that you can decide if it's something that needs to be addressed now rather than lather later.

But hugs & good health,

DeAnne

5

Thank you. Yea, it's really hard knowing my life is going to have to be different. Starting all over again when I finally felt like my life was back on track, but haha, just kidding. I'm really trying to stay positive and do as much as I can to be "normal", but it's just hard. Most people in my life are being as supportive as possible and telling me how this"will all be over eventually" and I'll be able to resume what I had going, or at least close. I want to believe them, and hope I will be a case that goes into "remission" or whatever the correct terminology is. But in the back of my mind, I know there is just as good a chance that this is it.... or close to it, and I need to start working on accepting and coping.

Ugh. Idk. Anything academic always came so easily to me.... and now I get lost (in a sense) driving to school. I don't want to sound mean, but I go from being tested at genius levels growing up... advance placements, special classes, etc etc. And now I feel as if I now have average or below average intelligence... or at least how I would see it. Heck, I couldn't even come up with a better word than "mean." Lol.

But your post about psychosis intrigued me. (There's a good word...intrigue. hehe) Idk about psychosis, but the cognitive deficit/dysfunction seems to hit on the tee...with depression and anxiety thrown in the mix. Here's a link that helped me understand...in case anyone else going through this too. http://www.lupusinternational.com/About-Lupus-1-1/Cognitive-Dysfunc... But who knows, maybe it is the more extreme physchosis cause this is my first (probably) lupus flare up, and its been going since mid July. Though the cognitive things really only noticeably started for me about 2 months ago.

Another weird thing that is happening too is my lack of sleep. Like bad insomnia, but it's almost like I'm afraid to go to sleep. My brain doesn't want me too...my body does, but I'm nervous, and idk exactly why. I feel like I'll miss something important or something will happen. Then I'm even more tired all day, and obviously also works against my cognitive abilities. Has anyone else ever had something similar to that or am I just going completely crazy? Lol Watch out, I may start throwing cats at people. Bwagwahahawawa! (Simpson's crazy cat lady reference) hehe.

Sorry for the book. Just def feels nice to vent to people who actually understand. :)

6

I can sit here and tell you all the resons I can relate, but I won't because I know it won't help you to feel any better.

I am sorry that you are having such a hard time. People are very inconsiderate when it comes to this illness and honestly every other illness, but as hard as it is, you have to find a way to channel that into something more positive. Stress is bad for us, it zaps energy we need to function and it throws us into flares. Our energy is a precious gift to us, so don't let someone's uneducated comment take anything you need to function.

This is the perfect place to vent, I have done it a few times :)

Hang in there Nic. I have faith you have the strength in you to overcome all of these struggles.

7

Nic961,

I forgot to add that you should definitely speak to the disability coordinator for your school. I know this is going to be difficult (admitting that you may need help) but my ex-boyfriend has that position at another school and he does everything possible for his student. Lupus should not keep you from your dreams. There are many simple changes that can help you achieve your goals.

This is just a suggestion but I would definitely check into it.

Hugs and good luck,

DeAnne

8

Even in remission I still remain fatigued and have arthritis, especially when cold. I am not sure about other people so I would not say you will totally be your old self in remission either. Not to sound discouraging but to be a realist.

9

DeAnne,

I actually already have disability set up with USF. I guess it helps, but it really depends on the teacher I've found out this semester. Two of the three are really understanding and will work with me when I'm having bad days.... the third is a, well, female dog about it. Funny thing is, it's my ASL teacher too... So you'd think she would understand needing help for a disability the most. But I guess empathy is not a pre req to teaching. Lol.

Blondie,

That's what I'm afraid of.... but what can ya do. I'm just trying to cope.... even though I don't want too. :/

Mamamarshall,

Thank you. I'm trying. :)

10

Rest when you need to. I am better at telling then doing, but I think that is one of the main things.

Nic961 said:

DeAnne,

I actually already have disability set up with USF. I guess it helps, but it really depends on the teacher I've found out this semester. Two of the three are really understanding and will work with me when I'm having bad days.... the third is a, well, female dog about it. Funny thing is, it's my ASL teacher too... So you'd think she would understand needing help for a disability the most. But I guess empathy is not a pre req to teaching. Lol.

Blondie,

That's what I'm afraid of.... but what can ya do. I'm just trying to cope.... even though I don't want too. :/

Mamamarshall,

Thank you. I'm trying. :)