Ever feel like u are a lost soul, kinda like u r never going 2 feel like u again?! :(

General
1

Hi All,

Well, feeling CRAPPY, as u can see, it just is beginning to get to me, cause I feel like I am never going to feel like a 35 y.o. should or like my old self again.....It makes me sad & I feel like I am a lost soul @ times....the fog sets in...I feel like I am in a different universe than others cause I feel so miserable.....it is frustrating...do u all get like that too??..I know it could always be sooo much worse, BELIEVE ME, I am grateful for so much in my life, esp. my beautiful & healthy boys <3....But I feel cheated too, like I can't be the AWESOME, ACTIVE & Healthy Mom I wanna be....although I know I am a VERY good Mom to them, I wish I could run about & have more energy......wake up feeling refreshed....not tired, even after a full night's sleep, OH THE FATUGUE is HORRIBLE!! WHY? WHY does that happen???! ....it stinks....just venting I guess cause it does after awhile really play games with your mind....

I worry of the future....I am scared @ times...but I am also feeling emothional right now too from feeling so bad & not feeling better....I will try to rest, cause that is what I need, what my body needs....I need 2 let myself do that...keep reminding myself....but I will remain positive, cause that is what I always preach & through it all, I will still SMILE, I won't be a hypocrite, I will do what I always tell others to do....I am just happy that I am in this with you guys....That does HELP...Thanks for listening!!!

{{HUGS}} Suzie :0) Xo

2

I know exactly how you feel right now, because I've been feeling the same exact way. It just feels like life has lost all flavor. I feel like I have done a complete 180 degree turn. I'm not at all the same person I was 4 years ago...even 6 months ago. I have a small child and she's the only reason I continue to fight. If I weren't for her, I think my depression would have set in so bad leading to suicide.
I really don't have any other advice except find the little things in life that do make you happy, and maybe focus on that. I really hope that you start to feel better. Good luck!

3

I too have had those feelings because I feel like with the fact that I stay so fatigued I am retreating into my room and not wanting to go anywhere. I notice everyone around getting that same frustrating look every time I pass on going out but I don't like to go out because when my nap time comes I just want to go to my bed and go to sleep. Sometimes it feels selfish but I can't worry about everyone else. I agree find the things in life that make you happy and every day will feel like a new day. Keep SMILING and know you have a family around you that knows what you are going through.

4

you are not a hypocrite Florence, even Nightingales get the blues.

It is not at all fair that you have this @$$ kicker disease. It is not at all fair that you lost your mother when you were only 14. None of it is fair. At least not from where we stand, right?

But I know you know in your heart of hearts that God has reasons we don't understand. And it hurts and it is awful.

Everything we have to face everyday seems like too much for us sometimes...even Jesus felt abandoned in His darkest hour. But for every pain there is a mercy to fill it. I don't know what it will be, but I will pray until we find it...I am not going to stop until you know that God has a plan for you.

http://youtu.be/RdopMqrftXs

love,

janice

5

Fessissima,

you will find the flavor of life again...you will. After bitter tears you will again "taste and see the Lord is good"

till then, if you need a shoulder, I 've got two

Fessissima said:

I know exactly how you feel right now, because I've been feeling the same exact way. It just feels like life has lost all flavor. I feel like I have done a complete 180 degree turn. I'm not at all the same person I was 4 years ago...even 6 months ago. I have a small child and she's the only reason I continue to fight. If I weren't for her, I think my depression would have set in so bad leading to suicide.
I really don't have any other advice except find the little things in life that do make you happy, and maybe focus on that. I really hope that you start to feel better. Good luck!

6

I think it is really great that you are taking care of yourself this way. It might be disappointing for your loved ones that you cant go out, But when it all said and done they will surly remember that you are strong enough to know how to do the right thing by taking care of yourself. Because who you are is far more precious that what you do.

NuDirection said:

I too have had those feelings because I feel like with the fact that I stay so fatigued I am retreating into my room and not wanting to go anywhere. I notice everyone around getting that same frustrating look every time I pass on going out but I don't like to go out because when my nap time comes I just want to go to my bed and go to sleep. Sometimes it feels selfish but I can't worry about everyone else. I agree find the things in life that make you happy and every day will feel like a new day. Keep SMILING and know you have a family around you that knows what you are going through.

7

Oh suzie!!

I wish i was there in person to just gently hug you!! Yes i know that feeling so very well! I get it so much...you do not want to sound like you are whiny ungrateful person...but at times this disease and life gets you down.

How old are your boys? I never could have kids but got my nieces from time they were born just about ...than had them 1/2 days per week after my brother died so his wife could work. I recall days i have to say that aunt lg was tired and we need to have craft /drawing/painting day! Or we go to library. I am sure you are great mom...my main doctor..was always after me to keep trying to have kids because she saw so many who parents did not care. She say..loree you are one of the good ones...and i feel like too many of the negative parents are having most the kids so you need to keep trying!! Make me laugh....she was my friend as much as my doctor.

I also...would have the girls chase after my dogs...just to wear them out...sneaky of me but worked!! But i know exactly how you feel because i take them on trips with me....and than instead of having constant fun..i get sick and have to slow it down. Oldest one always got it...but youngest one...she wanted to do it no matter how i felt and it was very hard. and you feel bad because not her fault...it is my fault.

But i am sure, like me, you made up for it in so many other ways...I get you cannot just rest...unless you have some help with your sons..even than they might work...

I think it is just fine to get angry at this disease and our lives! I will tell you something that blew me away. I use to go to this chronic women's illness group. Was mainly for women with breast cancer but they expanded it to chronic for like lupus, diabetes etc. I loved the 2 women who took turns running it. One day..this woman was telling her story and how she had never been to a doctor in over 25 years!! I was shocked and it was unimaginable to me. I been sick all my life really.

Well i had arrived early and this other woman came up for this group from small city about hour away because she had heard it was good. So we had talked and helped leader set things up..She had breast cancer and was just about done ....in the same place as the woman who had said she had not been to dr in over 25 years before she got this breast cancer.

So my head was trying to imagine what it would feel like to be that healthy...seriously it was hard i really could not. It just hit me how much sicker i was than others...Well the woman who also came early..hung around and she said to me what I had been thinking but never say it because i thought i sound like i felt sorry for myself. She said...when that woman said that...it hit me that her and i had cancer and it was bad...but it was about year out of our lives and than we will just go back to being 'normal'. But you...it is never going to end. And I am so sorry for you.

She was stranger...she said those words ...and i will never forget them...but just that she acknowledge how hard of struggle my life is and will be meant so much to me.

I told her how i was trying to imagine not going to doctor for 25years..and i could not. She said even she had problem with that....we laughed..she said you know that woman never even got how lucky she has been and will be.

maybe with having this disease...chronic one..we are constantly looking at the beauty in our lives, the joy because we also see the sadness and frustration as well. We see the balance...and like life we go to different sides ...happiness some days...and sadness other days. Both are good and both are okay.

i am trying to say...especially with us...you can take the mask off and show the real you...we all try so hard to wear the happiness mask...but some days...we must just be ourselves..and that is good too. take care, loree

8

Suzy,

I also know what you are feeling, up to three years ago I was working full time as a home health aide, taking care of others, now I am having others taking care of me. I was able to get out and do things that a healthy 40 year old can do. Now I just sit in my chair and do very light housework and try to cook a meal for my family at night. I took care of my Mother until the day she passed away, now my Father needs me and I am unable to do for him like I did for her. IT JUST ISN'T FAIR. It seems if I go out it is only to see one of my many doctors, because the good feeling days are few and far between. Please rest and take care of yourself, LWL needs you, since you are our major supporter :). Gentle Hugs !!!! Bethany

9

Hi , i just joined this group today and hope its ok me posting on here but this really hits home for me right now. i feel completely lost right now & when i look in the mirror, i dont even know who am i looking at anymore. And your right, you do feel like your being cheated out of life. I'm hitting the point of not being able to manage work (called out today) and everyday choirs. I dont even have the energy to blow dry my hair anymore and when my alarm clock goes off in the morning i cry as if i never even went to bed. I've been on steriods for 4 weeks now & doc just higher my dose yesterday. All the medicine scares me and i cant stop eating and steriods are making me very moody / emotional. i am sleeping my life away and still not feeling better. I feel like noone understands me even though my family & finance are very supportive of me.

Even through these times i know you have to stay positive and keep on praying but sometimes i just cant. i am going to start yoga to try and relax my body. I try not to complain to people too much because i dont like that "i feel so bad for you look" , it just makes me feel weak even though i know its not their intentions. That is why i decided to go online and talk to others who understand what i am saying. I see that i am not alone!

10

I wanna Thank All of U for the wonderful friendship & support......It makes me feel better, and knowing I am NOT alone when I feel so badly makes it easier too.....I thank u from the bottom of my heart & I will be Ok, as will all of u, we are in this fight together, and I will always be grateful for that also!, that I have such awesome friends that will walk this with meregardless of how hard it may be!....{{HUGS}} & Keep on Smiling, us ALL!! :0) Suzie Xo

11

Che Che,

i might be able to offer some new advice on taking care of your father. I had same problem of helping my mom after her quadruple by pass surgery....and i just had partial hysterectomy myself. So i was pretty tired. If you father is over 62 and on Social Security they will supply him for period of time...but was long enough for my mom, to help bath them, cook light meal and even do light housework. So in other words watch him if you should need to get out of the house for some chores. I know we would do the grocery shopping than.

BUT....you can now order on line from most major grocery stores. Delivery is free if you purchase $50 and up. But if you rather get into eating more healthy...most mid size to larger towns/cities now have organic produce as well as meat,fish, chicken, eggs, milk products and bakery breads etc delivered. if you just put in organic groceries to your table...or something like that...you will get a ton of sites.

This is such a great idea because you sustaining the small organic farms who before only sold to restaurants and maybe at farmer markets. Everything is picked fresh and ripe that day for your delivery...or baked etc. If you have not every ate homegrown organic food, veggies, eggs , milk and milk products plus the meat your taste buds are going to go wow!! Plus...hardly any transportation, so it is just a great benefit to everyone in the community.

Oh almost forgot...SSI also will send a nurse to come and check how he is doing....if he has any health problems they will make sure he is healing properly. I also believe if he needs physical therapy and if he cannot leave the house they will supply that as well.

So that should help make it a bit easier....i know you still have house to take care....you might call the local senior center and see if they have someone to assist you....be assisting him since it is his house really. So make sure you word that way. Or ask the nurse and home health aide....they both might know. I have heard too...about home health aides do actually clean your house as well.. will run vacuum and mop the floors clean bathrooms/kitchen. I just am not sure if they have too?

I hope i gave you some useful information....i know it is hard to take care of elder parent. If you have siblings maybe they can share times or days with you...i know that many feel since we are not working that it should fall on us....they also never seen us down and outright sick lol!

By mom has so she had all that set up by the hospital staff before I was even down there. So all i had to do was cook light dinners....and get her walking...that was hard part. But she did and now like i said...she healthier than i am !! Her garden would make Martha steward proud!! lol! Good luck with your father....hope i helped even just little bit.

some come in and do oday and hope its ok me posting on here but this really hits home for me right now. i feel completely lost right now & when i look in the mirror, i dont even know who am i looking at anymore. And your right, you do feel like your being cheated out of life. I'm hitting the point of not being able to manage work (called out today) and everyday choirs. I dont even have the energy to blow dry my hair anymore and when my alarm clock goes off in the morning i cry as if i never even went to bed. I've been on steriods for 4 weeks now & doc just higher my dose yesterday. All the medicine scares me and i cant stop eating and steriods are making me very moody / emotional. i am sleeping my life away and still not feeling better. I feel like noone understands me even though my family & finance are very supportive of me.

Even through these times i know you have to stay positive and keep on praying but sometimes i just cant. i am going to start yoga to try and relax my body. I try not to complain to people too much because i dont like that "i feel so bad for you look" , it just makes me feel weak even though i know its not their intentions. That is why i decided to go online and talk to others who understand what i am saying. I see that i am not alone!

12



Che Che said:

Hi , i just joined this group today and hope its ok me posting on here but this really hits home for me right now. i feel completely lost right now & when i look in the mirror, i dont even know who am i looking at anymore. And your right, you do feel like your being cheated out of life. I'm hitting the point of not being able to manage work (called out today) and everyday choirs. I dont even have the energy to blow dry my hair anymore and when my alarm clock goes off in the morning i cry as if i never even went to bed. I've been on steriods for 4 weeks now & doc just higher my dose yesterday. All the medicine scares me and i cant stop eating and steriods are making me very moody / emotional. i am sleeping my life away and still not feeling better. I feel like noone understands me even though my family & finance are very supportive of me.

Even through these times i know you have to stay positive and keep on praying but sometimes i just cant. i am going to start yoga to try and relax my body. I try not to complain to people too much because i dont like that "i feel so bad for you look" , it just makes me feel weak even though i know its not their intentions. That is why i decided to go online and talk to others who understand what i am saying. I see that i am not alone!

13

I am sorry that you are going through this and as I read what you are saying, I feel like you are telling my story. I can't even get this post right, I have tried 3 times lol, hopefully this time it goes through. I grieve for my ole life and I feel cheated. I am not angry anymore but sad because I will never know life as it was before. I have an 11yr old daughter (youngest of 4) who has never known me "not sick". I feel like she is being cheated too. I was very active with my older kids but I can barely get her to school. My Austic son(15yrs old) said to me the other day, "remember mom when you used to be Beautiful?" I know he didn't understand the impact that had on my but he is right! I don't recognize myself in the mirror anymore. As I take my (16 different meds), I ask myself"how did I get here?" I also dread going to the Dr. because evrytime I go , it seems, they have something new wrong with me to report. This time it is Diabetes! The long term and high doses of steroids, contributed to it. I am confused, the meds that I was given to treat the Lupus,etc, has caused a new ailment. I pray and give thanks for another day because I have had four people very close to me die in the last 6 mths. It just gets overwelming and the well intentioned relatives and friends either give you that Pity Look or tell you to don't give in to it!! I am not "giving in" to it, It is taking over my life!!! I have nights that I can't sleep and I think back on my life and wonder what I could have done differently. I know its silly but I am thinking that maybe I could have prevented the Lupus some how. Well, thanks for letting me VENT. I don't get a chance to do that much and hopefully this will post! lol

Feel better and thanks for listening!

Mechla(MsThang928)

14

Of course it's alright to post here we are very happy to have you jump right in and make yourself at home...that is what we are here for. It sounds great that you are about to take a yoga class, but as a former yoga teacher I can tell you that not all yoga is relaxing and some yoga teachers have as much compassion as a nail. It used to make me so mad to see how some teachers badgered their students and pushed them too far. so first of all trust your very own body to tell you what is ok and what is not.


And as for eating and steroid weight gain, sister I hear you and feel your pain. It sucks big beans. I am open to having some kind of support system for the whole issue. I have been battle ing eating disorder issues since 4th grade. Used to be anorexic, then bulimic, now...a mad eater( a close relative the THE mad hatter.lol)
look forward to seeing more posts!
Che Che said:

Hi , i just joined this group today and hope its ok me posting on here but this really hits home for me right now. i feel completely lost right now & when i look in the mirror, i dont even know who am i looking at anymore. And your right, you do feel like your being cheated out of life. I'm hitting the point of not being able to manage work (called out today) and everyday choirs. I dont even have the energy to blow dry my hair anymore and when my alarm clock goes off in the morning i cry as if i never even went to bed. I've been on steriods for 4 weeks now & doc just higher my dose yesterday. All the medicine scares me and i cant stop eating and steriods are making me very moody / emotional. i am sleeping my life away and still not feeling better. I feel like noone understands me even though my family & finance are very supportive of me.

Even through these times i know you have to stay positive and keep on praying but sometimes i just cant. i am going to start yoga to try and relax my body. I try not to complain to people too much because i dont like that "i feel so bad for you look" , it just makes me feel weak even though i know its not their intentions. That is why i decided to go online and talk to others who understand what i am saying. I see that i am not alone!

15

Happy that u were able to get that all out too...it does help, doesn't it?! I am so sorry u are feeling so badly too....It is such a vicious cycle! I feel exactly like u, heck, I think @ some point we all do! That is why this is such a wonderful outlet which brings so much solace & support that is so needed~ cause here it is understood at a personal level & not from the outside looking in....This is all a test of our strength & perseverance, so we cannot LET LUPUS WIN!! Continue 2 fight always!! I wish u peace & I wish u happiness...Please Stay Strong & know that u can always come here when u need to get something out & feel u have no where else to turn!! We r all in this together & that is a wonderful blessing~~ {{HUGS}} & Feel better & remember u will always be BEAUTIFUL inside & out~~ :0) Suzie

MsThang928 said:

I am sorry that you are going through this and as I read what you are saying, I feel like you are telling my story. I can't even get this post right, I have tried 3 times lol, hopefully this time it goes through. I grieve for my ole life and I feel cheated. I am not angry anymore but sad because I will never know life as it was before. I have an 11yr old daughter (youngest of 4) who has never known me "not sick". I feel like she is being cheated too. I was very active with my older kids but I can barely get her to school. My Austic son(15yrs old) said to me the other day, "remember mom when you used to be Beautiful?" I know he didn't understand the impact that had on my but he is right! I don't recognize myself in the mirror anymore. As I take my (16 different meds), I ask myself"how did I get here?" I also dread going to the Dr. because evrytime I go , it seems, they have something new wrong with me to report. This time it is Diabetes! The long term and high doses of steroids, contributed to it. I am confused, the meds that I was given to treat the Lupus,etc, has caused a new ailment. I pray and give thanks for another day because I have had four people very close to me die in the last 6 mths. It just gets overwelming and the well intentioned relatives and friends either give you that Pity Look or tell you to don't give in to it!! I am not "giving in" to it, It is taking over my life!!! I have nights that I can't sleep and I think back on my life and wonder what I could have done differently. I know its silly but I am thinking that maybe I could have prevented the Lupus some how. Well, thanks for letting me VENT. I don't get a chance to do that much and hopefully this will post! lol

Feel better and thanks for listening!

Mechla(MsThang928)

16

Hi all,
I'm really glad I found this discussion. I was diagnosed in October, and have been dealing with fatigue, joint pain, mouth ulcers, and now flu-like symptoms. The fatigue is probably the most difficult, as I can't and don't want to do a lot of the things I used to. I live in a great city and have a lot of good friends, but find myself spending more and more time at home resting and sleeping. I missed two days of work this week and slept for almost all of it. I feel like I am complaining to people more than I'd like, but I also feel like I have to in order for people to understand what I'm going through. Mostly I feel alone and like no one understands, because unless they have Lupus, how can they?

17

Melissa,

I totally can relate how hard it is for others, especially at work or even family members, to get what your really feeling like inside. Kind of like no one wants to really hear how sick you are feeling at work....and i know so often, i just say 'how are you' but really wanted a simple answer( okay you all can laugh now that know i write forever long messages!!) but i was busy and if i hardly knew them. Nor did i really feel comfortable in telling them how i really felt..even people i felt close too...if every day i said i felt pretty bad ...get old and I personally wanted to sound up beat optimistic...think how you try to feel can become how you do feel to some extent.

But what i did...was a fellow i worked with forever was diagnosed with HIV about 6/8 years after my lupus so he and i made our own language...like fine meant we really wanted to go home. Not well meant we were about to go home as soon as we got priority things done. Plus, we take breaks together to let out the pain on the really bad days. If you can find someone at your job that has chronic illness, diabetes, breast cancer even....there usually is another person sick or has family member who is and needs to share as much as you do...OR you could come on line now days and email us...sure everyone here would love to be supportive of you at work and trying to stick it out. I know i personally...would appreciate how hard it is some days to try and work...i also get how important work it for our self esteem.. So remember we are here and even better hope you find a kindred soul at work!

Rachel,

I vouch now after having RA since late teens/early twenties, along with lupus and now i have fibromaylgia as well that keep moving is the only thing that works! I loved to hike, grew up backpacking in sixties when hardly anyone was doing it. We bring a pack mule in since my sister and i were under 10 when my parents started taking us in for a week each summer in high Sierras...people would jump out and take photo's of us like the oddity we were!

I was lucky and got a podiatrist that promised me he do all he could to keep me hiking as long as i promised him to never wear heels again...i could not they created too much pain. Yes i got snide remarks about my shoes because some days i just had to wear like birks because they were so swollen and hurt so bad that was all i could stand.

My office was full city block and 5 stories which i tried to take stairs for exercise on good days...and just often i have to use a cane walking long distances in the building or on bad days. But I am still out walking/hiking. When i moved..i lost all my great team...really impacted my abilities because i am not getting the same great care. But hopefully i will find some good ones again!

One story that has always inspired me to keep moving...it is hike that is on the Pacific Crest Trail(goes from Mexico to Canada in the Sierras)...small part of it mid way hardly anyone but those doing entire trail pass on it. We like it due to the quietness and all the lakes for fishing. Well, this lady was out hiking it and you could see that every step she took hurt a great deal....she was on her way in...so just beginning. We spoke to her for a bit and she told us how she hiked this one particular area with her family first, than her husband and now in her80's she tries to take the hour drive over to it and hike part of it each year! I asked about her arthritis...was easy to see ..she did have hiking canes like me...said they help...that she lets her mind wander to sites sounds and memories.

Her smile was often and that day...i almost had not gone because my feet were so swollen...i am so glad i did go for i will carry her always in my heart as inspiration on those days when i feel i cannot go do it. I told my husband, i really felt she was angel that day..angel for me to keep trying because the beauty, music and memories are so well worth the pain!

I hope she inspires you as she did me and that you find your 'angels' out walking like i have over the years!


MelissaNYC said:

Hi all,
I'm really glad I found this discussion. I was diagnosed in October, and have been dealing with fatigue, joint pain, mouth ulcers, and now flu-like symptoms. The fatigue is probably the most difficult, as I can't and don't want to do a lot of the things I used to. I live in a great city and have a lot of good friends, but find myself spending more and more time at home resting and sleeping. I missed two days of work this week and slept for almost all of it. I feel like I am complaining to people more than I'd like, but I also feel like I have to in order for people to understand what I'm going through. Mostly I feel alone and like no one understands, because unless they have Lupus, how can they?