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panda_lupo
05-17-2011, 09:05 AM
Support System is Broken!!!!!!!!!!!

Sorry Guys I just need to vent today!! I donít even know where to begin or how to even feel. I think I will just start from this weekend. I went out of town for a concert and I came back in town and when the time came to go back to work I got a flare up. OF course naturally my family was like well you have been out all weekend and you should have stayed home if you were going to get sick. Then also workís not impressed with sick days even if you have notes from your doctor but work is all about money!!

Honestly I feel I feel like I need to defend my lupus to everyone and that makes me withdraw from them and makes me want to disappear! Like I have to remind them that I have Lupus and I should tattoo it on my face with a big L on my forehead

I donít complain when Iím in pain, I go out with a smile on my face and go to things for family and friends even thou Iím not feeling up to it. I do not voice that Iím sore that it hurts to walk that my stomach feels like an alien trying to burst through. And then the days were I need to voice how I feel there like ďOMG Amanda you were fine for a couple days agoĒ. Makes me feel like I should not say anything at all and that I should keep to myself; Iím not asking for pity or anything I just want them to stop making me feel bad for telling them the way I feel.

I made them a package with the spoon theory and facts about Lupus and I got great responses and a lot of ďoh I didnít know it was that badĒ and then a couple weeks later there back in there routine and it hurts, it really hurts when they tell me Iím a disappointment, Iím filthy cause I can never maintain my apartment and work is going to fire me if I keep this up! I just feel like what I can do! I take my meds I try to avoid certain things to not get a flare up! But after all that said and done I still get sick!

My support system is broken my friends and family are tired of hearing me not feeling well itís like a tape stuck on repeat and I just want to hide away from everyone I know and be by myself cause at least I wonít have to feel guilty for being sick.

Sorry I really needed to vent and Iím sorry if the punctuation or grammar is off, Iím really bad with that stuff.

tgal
05-17-2011, 09:23 AM
Vent away! I think many of us understand what you are saying. It sucks that we have to decide between having a life of some sort and getting ill or staying home all the time so we feel a little better. I have come to see that the healthy people just cannot grasp our life and what we go through. I can't really blame them. I would most likely have been the same way. That is one of the reasons that I need this place so much. This is the only place that I know that I am understood. We love you and we understand.

debbie-b
05-17-2011, 10:50 AM
Amanda,

Like Mari said, "we do understand". Just remember, this is the place to vent, if you have to.
I have a friend, that I don't see alot, but we talk on the phone every day. And every day she asked " how are you?"
If I tell her ," not so good, or I am in pain". She will say stupid thinks like, " you never feel good, you are always in pain."
Last time I told her, if she doesn't like the answer, she shouldn't ask. WTH am I suppose to lie and tell her that I am just ducky, because this is what she wants to hear?
My husband is the only one who understands and supports me. The other ones I don't care about.
If you don't have anybody who understands, that must be hard, but now you have all of us.

Debbie

Linda From Australia
05-17-2011, 11:53 AM
It is OK to withdraw for a while, to recharge your strength physically and mentally. But make sure you don't stay there too long. Even though it is hard to face people especially when you are feeling they are not supporting you, it is essential that you have contact with other people. When you are feeling down, especially when you feel as though people are attacking you, jump on the forum and read some fun posts. Try not to get dragged into reading posts that are negative, unless you want to support other people.

1 - Withdraw for a short while to recharge your mental batteries
2 - Do some fun things
3 - Find something to support someone else
4 - Get into contact with someone
5 - Remember that this is only for a period of your time

SandyR
05-17-2011, 01:25 PM
it's very unfortunate that in order to fully understand this you have to experience it first hand. If you experience it second hand you may have a good sense of empathy and compassion but you really only truely understand when you have lived it. we all understand.

panda_lupo
05-17-2011, 03:06 PM
Thanks Guys!!!

Feeling Guilty is something I absoultey hate and and the fact that I feel guilty automatcially when I'm sick sucks! It's not like I can control this diease fully! I do what I can and its wonderful to have you lovely people out there support me. Now we need to learn how to send Hugs haha!

ruziska
05-17-2011, 04:03 PM
{{{{hugs}}}}} Do what you can and can the rest! So you shouldn't have gone away if you knew you were going to be sick? COOL! so now your family thinks you are psychic! Tell me, does that come with the Lupus? If so, when? Seriously, like we know when we are going to be sick. Don't I wish. Oh to be able to have the ability to know how we are going to feel in advance so we can plan accordingly. You DON'T have to constantly explain or defend yourself. They know very well that you have Lupus. It's THEIR problem, most certainly not yours. Ignore them. Trust me, it gets easier to do as time goes by. Again, do what you can and can the rest. The only person you have to take care of is YOU. Make yourself happy and if that means withdrawing, then go for it. They'll survive.

Gizmo
05-20-2011, 09:37 AM
It sounds like your family all need to come down with a good case of the flu to remind them of what it feels like to be sick! Some people really don't ever get sick and honestly don't understand - others just forget how awful it is. When my daughter was still in school, but was really feeling awful I would use that analogy with her teachers and try to get them to imagine what it would be like to have to come to school every day with the flu, and then have work to do at home, too. It usually worked.

panda_lupo
05-20-2011, 12:17 PM
Thanks Guys! I'm struggling with being on my own right now! They may survive but will I survive right now I feel like I’m stuck in one place nothing moving forward or going back just stuck. And my bestie pointed out yesterday that I have no direction and that I don’t care from what he sees. And he absolutely right but I didn’t tell him that I snapped and yelled.

Real mature right?

Every time I want to talk or think about it tears just welled in my eyes and I don’t know what to do and shut down. This last week all I have done is go to work and come home and sleep, not eating and not taking my meds. I know it’s wrong but I don’t care! I really don’t!

I’m at the point where I want to disappear from my life like a take and break and then come back to where I left off ha-ha! But as they usually say only rich people can afford to go crazy haha

lacey50
05-20-2011, 05:52 PM
Here's one big ((((((((HUG))))))), I hope you feel it wrapped around you. I believe we all have been in your shoes at one time or another. Ignore those around you who make you feel guilty for having lupus. You certainly didn't ask for this. Maybe you could get some literature on lupus and lay it around where they have to see it and maybe they will pick it up and actually read it and get a better understanding. We can hope anyway.

Take care of yourself, take your meds and eat. We care about you and are here for you.

tgal
05-20-2011, 06:23 PM
I just want to say that this place keeps getting the most awesome people! One of the things I love the most is how even new people jump right in and give encouragement and support to anyone that needs it. I have never been on a board that worked that way and, for me, that is what makes this place special. So here is a shout out to all of you that have recently joined us because you are already making this home.

Thank you for the bottom of my heart for just being you.