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NoodleMom
11-02-2008, 09:46 PM
I realize that I wont ever get better from Lupus. It will not ever go away. It sucks.
What I dont get or rather just get plain frustrated about is that I cannot do the things I used to do. And then I get stressed because I want it done and it needs to be done and b/4 I would just do it. Now if I am to do it I need help.

I used to walk 2 to 3 miles every day. I used to be able to mow my lawn, to clean my garage, To drive myself somewhere, to go shopping, to cook a meal. to clean my house, to play catch or soccer or tag with my kids. Now I cannot do any of that.

I can only walk about 60 steps around my backyard, nevermind mowing the lawn. The garage is a huge disaster and it stresses me out to the point I go out a different door so I dont see the mess, but I know is there. Shopping...I am not allowed to drive because I do not have the endurance and can only manage to be out for one hour. Cooking and cleaning are too strenuous...
Playing with my son...anything physical takes too much out of me and I hurt.

I am just a spectator. I just watch life and living pass me by.

THats all. Not trying to whine or complain....just my reality.

K

rob
11-03-2008, 01:55 AM
Living your life as a spectator. Now those are words I can identify with. To say I used to be an active person would be an understatement. I had abilities that I spent so much time developing, and they just ceased to exist in a very short time period. Like you, I walked all the time. I was into hiking, mountain climbing, anything outdoors. I was a competetive shooter, I even used to jump out of a perfectly good airplane from time to time. One summer, I hiked across the Grand Canyon, not once, but twice. Now, the few hundred yards to my mailbox just kills me. My garage is a jumbled mess too. My life and house are a chaotic mess. I can't think straight anymore. Cognitive problems we all know as fog have put a wet blanket over my brain most days.

I know how you feel, I really do. Lupus sucks, and it probably won't ever get better. I joke with people that the only Lupus symptom I haven't yet experienced is remission. I don't know if misery loves company, but it does help to know that you and I are not the only people going through this. I know you are not whining, or complaining. Reality hurts. All we can do is savor little victories. I set myself small goals for each day. Sometimes they are just tiny little things. Things most people do with no effort, or a second thought. I try to focus on what I can do, and let go of those things I can no longer handle. It's easier said than done though.

Just know that you are not alone.

Rob

NoodleMom
11-03-2008, 10:41 AM
Thank you Rob. I am sorry that this disease has taken away your life as well. It sucks. It is so hard to keep a good outlook on life. You seem to be able to do that. I am struggling with that.

K

rob
11-03-2008, 03:16 PM
It might seem that I have a good outlook most days, but I don't think I do. I'm getting better at letting go of the past, and the loss, but it's hard. I have days where I'm full of hope, but I still have alot of days, and some terribly long nights where I get so depressed. But, before I found this place, I didn't talk to anyone, or go anywhere. That's getting better, so there is a little light at the end of the tunnel. One thing is for sure, Lupus sucks.

laurid8967
11-03-2008, 03:39 PM
Hey guys...
Im sorry Ive been MIA...Ive been really sick. Long story (boring) I dont feel like getting into right now.
But boy oh boy - can I relate to both of you right now...Im depressed, my house not being the way I like it is making me crazy - I miss life so much!! Thank you both for sharing.
Ill be coming around much more...I really miss you guys!!
Love Lauri

KathyW1958
11-03-2008, 05:20 PM
Hi Lauri,
I am glad that you are back and I am sorry that you have been sick. Everybody missed you a lot.

Hugs,
Kathy

rob
11-03-2008, 05:41 PM
Lauri! I was ready to send out a search party for you! How are you doing? We were worried. It's funny that you decided to say hi in this thread. Knowing you're still hanging in there makes me, well, less depressed! How is your son, I believe his name is Jack? I saw a new Star Wars game at Target today, and I thought of you guys. I'm happy you're back.

Rob

Saysusie
11-03-2008, 06:16 PM
Hey Lauri;
Welcome back! It was so good to see your post. I am sorry to hear that you've not been well, but so glad that you are able to re-join us.

Peace and Blessings
Saysusie

buddhabelly
11-03-2008, 08:14 PM
NoodleMom,

I feel as if we're all in the same boat. I've been in denial during the beginning. I was first diagnosed with SLE Feb '06. I was diagnosed with a disease I was not familiar with. I've been working in the healthcare field for a while now, and have never come across lupus before. I was scared and angry at the same time. Not knowing what's going to happen to me, will I be sick for the rest of my life?? :(

I've become depressed (I've better now, but, I still have my down days). I've always been an active person, I loved the summer, the sun, adventure. Knowing that I have to change my lifestyle was very upsetting. Being in the sun is a no-no now. I still try to enjoy it now, but I try not to stay out too long, stay in the shade, and cover myself with lots of sunblock. Taking walks, playing tennis is different now. My endurance is very low and the sun and heat totally suck the energy out of me. :( Things I like to do, I can't anymore.

Before I got sick, I was in graduate school. I was so close to finishing up. But, then I got sick, and diagnosed. Lupus has changed my life. I've lost the motivation to continue with my studies. My aches and pains and fatigue seemed to make things so difficult. I feel like my brain misfires, forgetting things all the time 'brainfogging'. I get distracted easily. So, going back to studying seems impossible. :? I'm grateful that I have a full-time job (provides me income and health insurance) but I wanted to further myself with another degree, but I know have to accept that I really can't do it anymore, or at this time. Maybe in the future. I'm already 32, I want to get married and have a family soon. Going back to school will be more difficult then... Oh me oh my! :(

Now, I take one day at a time and do what I can. I should be grateful with what I have. Its hard, but I'm trying to stay positive.

I do have lots of bad days, but a good day always comes along some time.

laurid8967
11-04-2008, 06:36 AM
Hi everybody -
I missed you all so much...Rob, how cool you thought of my Jack when you saw the game..lol. Actually, he was the Joker for Halloween and looked SO awesome!!
Im going to start a new post to say hello to everyone and, of course, I have so many questions as to what is going on with me...meds, flare, etc - and there is not a more reliable and compassionate site than this one.
Im so glad Im back!
Love to all -
Lauri

Saysusie
11-04-2008, 10:39 AM
Hi Buddahbelly & Members;
It must be very difficult to realize that you have to change your life and, possibly, give up on some of your dreams because of a disease. I think that many of us have had to do the same thing. But, do you think that it is possible to enjoy some of the changes because it has given us an entirely different perspective and taught us how to appreciate the truly important things? Also, some dreams deffered can steer us into a new direction where completely new and different dreams can be realized.
Perhaps you cannot complete your education in a classroom setting. Have you given any thought to on-line courses? Also, with our reduced endurance, intolerance to the sun, etc. we are now much more able to truly appreciate those moments when we can go outdoors. The magnificence of nature means so much more to us and we see things with different eyes. The ability to truly appreciate what is good and beautiful is something that is missing in so many......but because of our limitations, it is something that has become an integral part of us!
Also, we are much more discerning about the people that we surround ourselves with. We now seek out and cling to people who see the world as we do. This means that we are surrounding ourselves with positive, supportive, and caring people. In so doing, we, ourselves, become even more positive, supportive and caring.
Yes, this disease has changed us...yes it has prevented us from doing so many things that we were once able to do. But, this disease has matured us in so many wonderful ways. Look at how everyone in this WHL family is so caring, giving, and understanding (that includes you!). What we have become as a result of our illness (in my opinion) is so
much more important than the illness that we have.

I hope that you have a blessed day that is filled with more hope and less depression.

Peace and Blessings
Saysusie

buddhabelly
11-04-2008, 05:25 PM
Thank you Saysusie! You always say the right thing at the right time. :wink: Hope some of your positivity can rub off on me. I do look at life differently now. I developed a new appreciation for many things and learned not to take anything for granted.

The WHL family has given me strength, knowledge, support, and new friends. Without you, I'd be lost and scared. Thank you for being there and holding my hand through my good days and bad days, through all my aches and pains. :)

sits_inthe_corner
11-04-2008, 05:49 PM
I'm going through a real down swing this week. Just going through the motions.

I've had an emotional roller coaster the past two week...and I feel like I'm running on empty.

Work has been horrific. The atmospher in there right now is down right poisonous.

I just can't face the thought of "looking" for another job, but I'm truely unhappy there.

Plus there is the problem of what the heck else can I do. I feel old, tired and worn out.

buddhabelly
11-04-2008, 06:10 PM
I'm sorry you're feeling down "sits_inthe_corner" :( The Lupus roller coaster affects us all.

Work can really suck the life out of you, especially if you're working in such a stressful and negative atmosphere. There are days when I feel the same way. Sometimes, I wish I didnt have to go to work. The motivation is not there. :( I do enjoy my job. But, as you said, the atmosphere is poisonous. I dont know about you, but I have certain somebodies who make work uncomfortable and not fun. I try to live in my bubble and ignore them. But, working with them all day can become impossible.

I, too, dont want to find another job. What if I cant find a better job? I need the $ and the health insurance.

mnjodette
11-05-2008, 06:11 AM
Noodlemom, Rob, Buddhabelly, Lauri (welcome back!), SITC - so hard to 'say goodbye' to an old life and embrace a new life that sometimes feels like no life at all. Saysusie, I love your advice - you've had a long, tough road to get to where you are, so I have a deep appreciation for your perspective. Thank you for shining a bit of light on what often feels like a lot of darkness.

I've always been a big-time list maker, and had to get everything on my list done, every weekend. I used to clean my 3 level home top to bottom every week. Fanatical about clean (a legacy from my OCD mother.) Well, there are dust water buffalos under my furniture now (waaayyyy too big to be dust bunnies :shock: ) Hubby helps...helps A LOT...but it's not the same. Now, my lists may have just 2 things on them, and if I get one done, it's a good day. Learning to balance...learning to let things go. Now, maybe it's time to learn to love some of the new life, I guess. I've met all of you...that's a good thing! (And I lived to see my husband scrub an entire floor of my house on his hands and knees....gotta' love that! :lol: )

Warm hugs to you all.

Jody

Saysusie
11-05-2008, 09:23 AM
You are most welcome, everyone! Yes, it has been a long, hard, difficult road for me. But, I've always found that my life is so much easier to live when I stay focused on what it truly important. My motto, seen on each and every post, is "Look for the good. When you find it, celebrate it and praise it"

SITC;
I am so sorry to hear that work has become caustic to your well being and that you are feeling so badly. I know that you cannot just jump from one job to another, so you must find a way to survive where you are. That, in and of itself, is a burden that can cause insurmountable stress which bleeds over into your home life and your overall health.
I wish that there was something that I could do to take away the 'horrificness" of your job, to help you feel more energetic and to lift your spirits. All that I can do is to tell you that we are here for you and that we truly understand.
I am sending you comforting hugs and caring thoughts!

Peace and Blessings
Saysusie

sits_inthe_corner
11-05-2008, 02:38 PM
awww thanks Saysusie

I'm just going one day at a time and am dusting off my resume and keeping an eye open for possibilities.

Life has lots of twists and turns ... you never know where you'll end up.

Saysusie
11-05-2008, 05:16 PM
Good for you!!! Hopefully, you'll get to send that resume out and get an offer that is much more conducive to your physical and emotional health.

Peace and Blessings
Saysusie