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purplepinkgirl
04-21-2009, 10:55 AM
Lately i have had a little pressure on me because its getting a harder to juggle full time school and work. everyday i have to fight to get out the bed in the morning and now i have to even fight to keep going through out the day. I always find something positive and praise it i any situation i have but it seems as if the devil is trying to stir something up right now. I really dont have anyone to talk or cry to that understands how i feel, everytime i tell someone i am nausea, migraine, or extremely exhausted they try to compare it to themselves " oh yea, i get really bad migraines, and I know how you feel im tired too". No, you dont knoe how i feel is what i want to say, they dont experience feeling good and being happy at like 2pm and then at 5pm your sick! they dont get it, and i believe the people who are somewhat close to me really doesnt take it serious or think its bad since i "look" physically ok. I am tired of pushing myself so hard, its just really frustrating to go through this as often, and i know there are others who are much worse but it still doesnt make me feel any better. I feel as if i want to just give up and sit home and lie in bed all day. It's bothering me so bad that i feel like i am going to snap at the next person that is rude to me.
Im am just praying until something happens, im beginning to be lost....

rob
04-21-2009, 12:10 PM
Hi Purplepinkgirl,

I'm sorry you are feeling so badly. Sometimes we are lucky to have a person in our lives who wants to understand what it's like for us. Other times, people brush it off and really don't care. Either way, I find the only people who truly understand what it's like to live with Lupus, are others with Lupus. And the problem is, not many of us live near any population center or city where we can get together face to face with others like us. I was diagnosed with SLE five years ago, yet the only other Lupus patient I've ever met face to face with is my mother.

That's what brought me here. Every day I wonder what it would be like for all of us here to actually get together and meet face to face. Somehow, someday, I hope that will happen. Until then, we have to lean on each other here.

Like you, I can be feeling great, and two hour later feel terrible. And, like you, I don't look sick. I no longer work and I'm on full disability now, but back when I was working, the fatigue and pain made my workday just drag on and on. Minutes seemed like hours. This disease is relentless, and oftentimes there is nothing we can do to get some relief. My patience is not in good supply and I do "snap" and go off on rude people sometimes. Sometimes they have it coming, othertimes not. I wish I had answers for you. Just know that you are not alone, and there are plenty of people who do understand. For you and I right now those people are here. I hope you can get a little rest, and I hope tomorrow is a better day for you. Hang in there.

Rob

purplepinkgirl
04-21-2009, 12:21 PM
Thank you for your reply. It was very helpful and true. I am glad that this site can provide us the opportunity to meet others with this disease. I do not look for anyone to pamper me and give me attention, I would like to be treated just as anyone else but i do not like it when someone is a butt head to me and they dont even know whats going on. Thats why i always try to be nice and respect others because i do not know what they are battling. My professor wanted the students to get up and volunteer in class and I had a headache so i told him i would pass, he got a quick attitude and told me i should go home if i dont feel well, i told him no i do not want to miss the notes (final exam) and i will be okay as long as i dont keep getting up and moving around.... he was really rude and he almost got it....if i didnt feel that bad i may have told him off and where to go.

That is not like me, i hope i am not developing an angry attitude because that i dont want, people who are mean and angry all the time are usually miserable and i dont want to be that way!
Thanks again for listening.

dsunshine
04-21-2009, 01:47 PM
Hello Purplepinkgirl!
I am here to listen and respond to you. I know exactly how you feel...everyday! Even when I am having good days I feel like no one understands and my family/friends are very supportive. You are right that others try to compare their aliments but sometimes you just want people to have a nice warm cup of shut the heck up and listen...at least that is how I feel. Sorry for the graphics but that is how I feel!
I started keeping a journal again and I also see a therapist that I see once a week and I lay it all out for him no holding back. I cuss I fuss and I express myself to my therapist and he listens. Poor guy but he gets paid to listen.
Perhaps try seeing a therapist or keeping a journal and if not you are always welcome to vent to me directly...I am here and I do understand being tired and having the mood swings...good days/bad days moments/minutes all that. Keep doing what you are doing with the dialog/writting and know it is okay to take a time out if/when you need to.
Tell the devil to get off your back as he is not welcome in your life or near your body/mind. Tell him you are a VICTOR and not a VICTUM. NO WEAPON FORMED AGAINST YOU SHALL PROSPER!
You beat this...it does not beat you! Proclaim your health and remission! Mind over matter!

lucky7
04-21-2009, 01:49 PM
AWWW, Hi Purplepinkgirl!!!! I hear ya!!! I get the same thing from people about when i talk about not feeling well! You're right, if i hear someone say they understand or if they dive right into how THEY feel, ill scream with ya!! LOL Sometimes i just want soemone to LISTEN and hug me, not center on THEM again or try to compare it to their symptoms at the moment. Its hard for people to understand, thats why i LOVE being HERE. They DO UNDERSTAND. Im like you, i have a GOOD attitude about this whole thing the MAJORITY of the time, i think those rational thoughts LOL, but im human and sometimes i want to scream!!! In fact its funny i read your thread about it cuz today was one of those days! :hissyfit: Just vent to us when YOU need to and WE will vent when WE need to! Thats the thing, we DO GET IT! We're here for you! Gentle HUGS and i hope you fell better:cute:

Angel Oliver
04-21-2009, 03:20 PM
Oh purplepink girl im sending you gentle hugs.Hang in there we are all here for you.

love
Angel.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Pretti in Pink
04-21-2009, 06:43 PM
Purplepinkgirl,

As finals approach, it's probably beginning to wear on you. Remember to try and pace yourself (as much as possible) and look forward to this term being over and being able to get a little rest. That sometimes helps give me a (small) boost of energy and courage.

But most of all, know that we, WHL family members, do understand and are here to encourage, listen, make you laugh, etc.

mountaindreamer
04-21-2009, 07:43 PM
hi purplepinkgirl,

thank goodness your semester is almost over....hopefully this summer you will be able to get some rest, and gain energy before approaching next term.

i am so sorry that you face all of the ignorance and rudeness that people dish out....especially from your professor. You might want to consider a visit to him and explain your illness, and ask that he not embarrass you again in class. what a jerk.

as you already know, we are here to help in any way we can, even if that is just to listen to you when others won't or can't.

purplepinkgirl
04-22-2009, 04:48 AM
I am so grateful to have so many people who care about what I and all of us are experiencing. This site is trully helpful and I would like to thank all of you because your postings have helped me cope with things and push myself to a better day. You are all wonderful and special in my heart......May God bless you all!!!

Oluwa
04-22-2009, 05:25 AM
Purplepinkgirl...

Head Hugs...what an awful day.

Wow, school and work..I don't know whether to say good for you or whoa....slow down. If no one has said it lately, you are an amazing person and student to tackle, take on so much and still remain in the positive. And when doing that feat who wants a butt head stirring it up when you are in the midst of choking down pain and fatigue to carry the day out....scream girl, scream...

We can't always stay upbeat, not even the healthies can do that....so allow room for directness, frankness to explain. Does your professor know you are ill? Perhaps tell him alone and maybe he won't be so quick to judge instead he may understand, not your illness but the drive, the dedication you have to be in class. If need be write out what you want to say, to give you strength in your spirit and heart to bring this to his attention.

When one adds their story to the mix, saying they have had migraines they are just trying to relate, but I know for us it isn't enough. Next time, say I would love to have empathy for you, but right now I am in the midst of a personal pity party here..would you like to come and bring lots of presents.

Hey, maybe give your professor and those who don't get it a print of this...http://butyoudontlooksick.com/the_spoon_theory/ I know when I first read it, I cried...I cried for me, because it felt like she was writing about me...someone knew what my day felt and the choices I had to make too....the choices anyone without an illness doesn't have to make...

I have also learned long ago why they are not getting it, not understanding isn't important for me that they do. I found it is easier on me to understand why they do not get it....they don't have a chronic nagging life threatening disease.

It is early, the start of a new day....I hope you heart and mind feel better than yesterday...near of far you are not alone, we are here at the stroke of the keys...

Enjoy your day, PurplePinkGirl...it is great day to be alive...especially in Florida, hasn't the weather been great. I am just north of you South Carolina and I have been in it. Lotta pretty pink and purple spring flowers and new clothes on the rack...go treat yourself....

Head hugs...happy day.
Love,
Oluwa

rob
04-22-2009, 07:51 AM
Hey Purplepinkgirl,

How are you doing? I hope you are having a better day today. Just hang in there, things will get better.

Rob

lucky7
04-22-2009, 11:02 AM
Nicely put Oluwa:cute: I too hope you are having a better day today Purplepinkgirl! Your post was sweet to us! Im glad the people here can help you to get through your day Better! I've felt the same thing numerous times, this site is GREAT in so many ways and i just adore the wonderful people on it!:wub:

wrightrs
04-22-2009, 01:23 PM
Oluwa, I keep the Spoon Theory on my computer. And I'm on the "But You Don't Look Sink" Email list I love to go to that sight. I found it on "twitter". I go to twitter to talk to my pet friends and lupus friends.

froggal
04-23-2009, 02:18 AM
Hang in there! Keep your chin up, and remember you have friends here!
Always a friend ~ Angie