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bntshep
10-20-2008, 08:53 AM
Hello, I am new to this and have had lupus now for 4 yrs. I was in denial for a long time and come to realize this is it. So I have accepted the fact that I am not lazy, or insane, I have a disease. My family has been there, but they dont help out when I am in a flare. Its like they are too. I get no help with housework or grocery shopping. It is soo depressing that I used to be this outgoing, energetic person who now has no clue as to why I hurt, depressed and just has no energy. I need someone to talk to that understands what I am going through. Please someone help me get through this. :cry:

KathyW1958
10-20-2008, 09:41 AM
Hi Bntshep,
My name is Kathy. I have SLE Lupus and have had it for years. It is a hard illness to deal with at times. I hear where you are coming from about others not helping out a lot. I think a lot of times they just don't understand how bad we feel as they do not have this illness. This is a really hard illness to deal with. I understand about what it is like to be outgoing and energetic and then all of a sudden that is gone. It is upsetting big time. As time goes on you will figure out what you can and can not do. As far as the housework and grocery shopping, I finally had to tell my husband and kids that either they could help out or it would not get done. They got the message quickly and they all started helping out more. Sometimes you have to speak right up and be rude about it to get the message across. There are a lot of good folks that comes in here and they may have some better information that can help you out. I hope that you keep posting as we all care and we do definitely understand how you feel big time.

Hugs,
Kathy

Oluwa
10-20-2008, 10:06 AM
Hi Bntshep...

Welcoming you with a tight hug.

I am happy you realize it is Lupus and that you are not lazy...a label we fight so hard against. We even fight with ourselves over it..

First of all you hurt physically, emotionally and mentally because you have a chronic disease, a systemic disease. No rhyme, nor reason it seems. It seems a vicious circle as all three do laps around you causing you pain in the spirit, in the body....they all go hand in hand...wondering which came first...

Depression, fear and anxiety is common amongst us...so we are always striving, seeking ways to cope. Me, I try to handle things head-on. A way through it, around it or change it. I try not to tread too long because I will l go under. With modifying my lifestyle, through my faith, books, exercise, food..medication schedule..trying to live, enjoy each day as we, with a disease or not, we are finite.

For me, I try to get one of three under control first..usually the pain. How is your sleep? I find sleep affects the magnitude of my pain a lot. Hugely. Then it domino affects my emotional state...depression. Then it shakes my spirit.

For some, it maybe depression first... about the diagnose, that is aggravating the symptoms leading into a flare...

I also find many of the medicines we are prescribed do have behavioral side effects. Depression, anxiety, headaches...malaise, drowsy. I am affected by these easily. Dosing with anything for your symptoms?

Whatever it is, the first, I feel I need to take control over one to gain control over the others. Makes me feel like I am doing something for my health...taking charge, being my own advocate.

With family, we seek out their help to support us emotionally, physically and mentally..sometimes a huge load for them. So, times we need to branch out, like you have to find emotional support here. Physically support by hiring out if able. Asks friends to shop, a church member, a neighbor. Sometimes we just can't find all we need rolled up in one person.

My husband is great in the physical part, will do anything for me...but on the emotional side, he misses the mark a bit. I use to get upset about it, feel unloved. Measuring his love but I realized he can not provide that type of emotional support regarding an illness. At least not today, maybe tomorrow. But what is important for me, is I realize that, that he can't be everything to me. That would be a heavy load for one person.

Some family members can give the emotional support, but not the everyday chores, errand and etc support...

With some people, family, friends, colleagues, because we don't have a crutch , nor bandage their first observation is to see...humm "You don't look sick!" We stumble trying to explain, seeking validation, but I find from here and from my experience...if you don't find it there, look for empathy elsewhere. If not your brother, than you sister...if not your friend, your coffee break friend.

With household work, it is imperative you have a discussion with your family about your disease, how it affects you physically. A great read to help you with this approach is The Lupus Book by Daniel Wallace...another spot is http://www.butyoudontlooksick.com/the_spoon_theory/.

For me, I describe myself as a bank...no deposits (rest)..no withdrawals(energy). If I try to withdrawal, while making no deposits I bounce checks...(flare.)

Are you taking the steps to prevent, lessen the strength of your flares...? Such as taking your drugs the same time everyday. Exercising...Exercising..huh??? It will help with the fatigue and pain. Avoiding processed foods. Covering up from the sun? Avoiding sugar or it fakes. Ways to manage stress....

If we don't take of ourselves (our body). Where are we (our spirit) going to live.

Again, welcome..lots to read about on how to cope from everyone...

Keep looking for wellness..be well.
Love,
Oluwa

rob
10-20-2008, 12:05 PM
Hi bntshep,

Welcome. My name is Rob, and I was diagnosed with SLE just about five years ago now. Your words could very easily be my own. At first, my family was not supportive at all. In fact, a person who I respect more than anyone, my father, called me a lazy attention seeking faker.

I was a very outgoing person too. But after the diagnosis, and all the people who gave up on me, I withdrew into myself, my home, I just dropped off the radar. I still today have to deal with the self imposed isolation, but it's getting better. My family eventually accepted my situation, and realized that there is nothing fake about what was happening to me. We have since become a close family again, and they help me with alot of things. My Dad and I are friends again too. It just took my family, and myself, time to accept the situation and deal with it.

The depression, and fatigue are really hard to deal with. It's oppressive, like someone has thrown a lead blanket over me. I have bad days, but I also have good ones. I've lost alot of things. Friends, fiancee, people just stopped coming around. But I have gained alot of good things too. New friends, new interests. I discovered this place and the people here have done so much to help me.

I think you'll find the same thing. Being around other people with Lupus, whether in person, or online, can really help. So, make yourself at home here, and feel free to talk about anything you need to. You can vent, and unload here, and nobody will judge you. Have hope, you are not alone. I'm glad you found us.

Rob

Saysusie
10-21-2008, 09:26 PM
Welcome Bntshep:
I can't add anything better than what you've already received from our members. Just wanted to add my welcome along with those you've already received.

Peace and Blessings
Saysusie

StuwiW
10-22-2008, 12:08 AM
Bntshep

This is exactly how i felt when I had Lupus, my friends and family thought i being lazy and complained too much, this was before anyone new i had Lupus. I once had Pneumonia, used to complain a lot but it took them a while to actually realize i had Pneumonia, like i was not able to laugh because my side would hurt so much. then there was a time a felt a sharp needle pain in my leg, i complained about that too but they said i was being a baby and complained too much only to realize later I had DVT.

I can understand the part being lazy, I too used to think that it was just me being lazy but soon realized it was the Lupus. I used to be a long distance runner and a soccer player, but now i cant even run 100m without running out of breath. YOur situation sounds exactly similar to what I have been through. I am aslo new to his forum but would like to welcome you too.

The people on the forum are great and soo friendly.

rob
10-22-2008, 06:59 AM
I know how you feel StuwiW. I used to be very active too. I climbed Mount Elbert, the highest peak in Colorado, and I've hiked across the Grand Canyon twice. Now, walking the 200 yards to my mailbox and back makes me totally exhausted. It's frustrating.