[livingonaprayer]

Hi Everyone,

It's been so long that I've been here. I've really shut everyone and everything out of my life.

Lately, I've been wondering if this KIND of life is worth living for... I know, I have my daughter and my family and certain friends, but these awful thoughts keep coming into my head and these thoughts aren't like me to think.

Like my daughter, she is 7. I think to myself that it's not fair to her to watch me be sick all the time, to try and take care of me when I should be taking care of her. She deserves so much better. Maybe my family would take better care of her than I do.

I'm in bed most days feeling awful. I get up to get her ready and take her to school and then it's back to bed until it's time for me to go and pick her up.

I have NO friends anymore. I don't go out. And if I do go out, it's just to take my mom or dad somewhere since they need someone to take them. I'm 32 yrs. old and my social life is my parents!!!

I mean, I would NEVER do anything to hurt myself, but thoughts do come into my head. I'm not the type of person to think like this, but this illness is really getting the best of me lately. It's getting harder and harder to try to cope with.

Has anyone else ever had these feelings? Do you feel like your at the end of the tunnel with NO light?

Geez, I shouldn't even be complaining like this because I know there are those of you out there that are dealing with so much more than I am.

Sorry about the rant... just had to let it out!

~Dee

 

[*~aurora~*]

I tend to get very suicidal when I am at my worst flarewise. I am 99% sure that it is a physical part of the process this #@$% disease takes on us... and that's usually about the only thing that saves me from hurting myself. Please take good care. I know what you mean though... I just turned 20 and have been pretty much ostracized on my campus (people HATE me here) for being visibly sick. It is hard, but I know it makes me a stronger person. Every time I turn on a video game instead of killing myself, every time I smile and push my walker into a room where people are glaring daggers at me, every time I drag myself and go to class, every time I email a professor for the umpteenth time to say "I'm sorry, I just can't do it today."... it's making me a really strong and courageous person! So I'm sure there are plenty of things in your life like that and in the end you will be really strong and a tremendous role model to your daughter.

It's hard to see out of it when you're in a bad flare, but try to remember that for a lot of people this stuff comes in phases...you might be really sick now during the winter, but maybe in the spring or summer or fall you'll feel better. The winter is really hard for everyone-- try to remember that there is less sunlight, more colds and flus going around (which can be murder on us flarewise, even if we don't get symptoms of the cold or flu), more cold weather (yes, even in NM!)... try to remind yourself you're feeling these way because of these factors, not because anything about your life situation is really that awful. well, it IS awful, just not nearly as awful as it seems when it's cold and dark and you hurt and your brain is under attack!!! :lol:

I really hope the warm weather and everything comes soon so we can start feeling better... and just hang in there, it really will get better eventually. I don't know for sure that I have lupus yet, but I have very similar symptoms and impairments. I almost always get a reprieve from being ill for at least a month or two in the spring... usually it starts in march for me. When I get suicidal in the winter I just remind myself that all those agitating factors will be lessened in a month or two. Keep hanging!

 

[Katharine]

Hi there Dee,


I'm sorry it's so tough for you right now. I think we have all felt very bad at times and we have all asked ourselves that question.

I do truly believe that life is worth living even if at times, like right now, I have felt pretty rough myself.

Children are extremely adaptable and most children don't truly grasp whether their Mum is actually "ill". She's just Mum, the person they love deeply, who is always there. People often ask me how the kids "take" my illness. It's an odd question as they don't take it one way or the other, they just get on with life. Hubby and I work very much as a team. There are some things I can't do, some days I can't do things but there are a lot of things I can. I used to work pretty hard, coming back late every day, rushing to pick up my kids, snapping at them to do their homework while trying to get dinner on...How on earth did I do that and live such a mad life? I now collect my kids and can smile. I have the time for them even if that time is given from my couch or sometimes my bed. They'll all come and snuggle up on either with me.

I grew up with a seriously ill mother but I have to stress that it is only now that I realise just how ill she was at times. I never gave it a second thought at that time. I never have thought of Mum as an "ill" person, just as Mum.

It is important to still "love onself" in all this. I think we all need to feel important and sometimes we can let ourselves believe that we are useless. We are far from that, we just do things differently. I do occasionally get down from looking back at who I used to be but that has such a bad effect that it is a luxury I tend not to indulge in. Who I used to be is a waste of time, it is who I am, right now, that counts. If there is something I want to do, I try not to look at the despair of not being able to but try to find a way around it so that I can. Of course, that is all the theory and there are ties it all goes phut!

It is easy also to cut oneself off. I am, by nature, pretty solitary anyway but even I have limits. I do have a few online friendships and I keep in touch with old friends and colleagues through a netorking site whose name I'll not mention. I do also have some very good friends that I see when I can. We often invite people over for dinner. Relaxed people who don't look at me oddly if I wear crocs instead of shoes (I can also go to their houses like that ) and that does me good even if I have to take a nap to survive the evening.

I used to be pretty outdoor active. I'm not any more but have decided to do all those things that I couldn't do before. Catch up on my photoshop studying, perfect photo technique, take up drawing again, ....I get involved (mentally) in hubby's business and make sure we can talk about that too. My outdoor activity is limited to walking my dog most of the time and there are many days I wouldn't want to do that but I don't have a decent garden (it's under 20cm of snow now and waterlogged all year anyway) and I HAVE TO go and walk him. I'm a member of the local dog club and try and train him when I can but we mainly go for social reaons (both him and me).

Lastly I think it is important to know oneself and be honest. Is this just a down patch? Will it pass quickly? or, if we're honest with ourselves, could we be suffering from depression? That is very much an integral part of the disease for many people and nothing to be ashamed of but very much needs treating. How on earth can we cope with everything this disease throws at us if also suffering from depression?

So, on that last point, if this drags on too long, if it feels like a bottomless pit, if you can't see any bright sparks and have lost all enthusiasm...GET IN TOUCH with your doctor sooner rather than later.

Just some thoughts which I hope will help a little,
:hug:

Katharine

 

[LoopyLoo]

Hi Dee,

I very much understand your post. My life is very similar to yours at the moment except that I don't have children. I had the same thoughts as you and my rheumatologist felt I was depressed - I denied this and battled on for another couple of weeks until things came to a head.
At times I wasn't sure if I was staying in bed due to depression, lupus or medication. It's a tough one to call.


I would urge you to talk to a doctor you trust and get their opinion. I was completely against taking any form of medication but I don't know where I'd be without anti-depressants. My GP put it perfectly to me - he said that I come across as intelligent and informed about my condition and if he told me that he could give me a drug to improve my lupus I would jump at the chance so why was I so against anti-depressants.

There is no quick fix for the way you feel but the first step is telling someone and accepting help. I'm not saying you definatley need to be on medication, there are many different options open to you. One of the things that is helping me is learning coping techniques and relaxation therapy. Katharine hit the nail on the head - my biggest problems is feeling useless and disliking myself. My depression is 'situational' due to lupus and pain and not something I've ever suffered from in the past. You are by no means alone, in fact there are more members here in the same situation than you realise.

I hope this makes some sense to you, I'm not great at finding the right words these days! You've been very brave to post your experience here, I know how hard it must've been for you.

Hugz,

Pam x

 

[LolaLola]

Hello Dee, Grit your teeth, get help if necessary. I know it isn't easy.
Keep talking to us.
X Lola

 

[Christine UK]

oh bless your heart (((hugs))

We all have badtimes when i am sure many including me feel just like you...you are not alone in feeling like this...

My two children are well balanced and caring and lovely human beings...

My daughter is doing nursing so it didnt put her off !!

Take a deep breath things WILL get batter x x x

 

[ldshrubb]

I am also going through the same thing. I get up, see kids off to school, then go back to bed and sleep before I go to pick them up.It does not feel like much of a life, more like limbo land!

A few years ago, I was where you are now. So depressed, and in so much pain, i wondered if it was worth living. I then happened to see a picture of my two kids, and thought I had to, if only for them. I lost my mum when she was 50, and could not imagine my kids going through that.

I think we must take a day at a time, and just that. The bigger picture is sometimes too much. I did come out of that hole, with anti-depressants, and have had good times, in between the bad. Its those days that make it all worthwhile.

Take care x

 

[Joandublin]

Hi (((((((Dee)))))))

I had often wondered how you were doing and I was so glad to notice you posting earlier today. I was very sad however to hear how you were feeling :hugbetter:

I wanted to reply to you about how you are feeling about your daughter and whether she would be better off with your family raising her than you. Unless you are so unwell that you cannot provide basic care for her and she is being neglected as a result, then the resounding answer is NO :hug:

I know how much you adore your little girl and she must absolutely adore you as well. Kids adapt to what they experience around them and unless a child is being abused then there are very few circumstances where I could think that it would be better to separate a child from its mother if they share a loving, close relationship.

Children tend to remember things as the way that it affected them, i.e. they interpret situations and translate them into emotions. When she is grown up the things she will most recall are not so much the practical, everyday memories but the WAY she felt growing up and basically all of the emotional stuff that goes along with life's ups and downs.

Thats the thing that you need to hold on to Dee. The bond that you have between yourself and your little girl.

On the practical side of things I couldnt count the amount of times I couldnt go here or there with my 9 year old because I was just too tired or sick. I wont pretend that I didnt feel guilty. I wouldnt be human if I didnt. However we get through the moment and always, always, the bigger picture unveils itself. I know he is happy and secure with me and I would never want to break that insecurity - even if it does mean he has to have a sandwich sometimes instead of a cooked meal because I am too tired to cook, or if he falls asleep in his clothes on the bed at night because I was too tired to remind him to get into his pyjamas, or he occasionally has to wake me up on the sofa to tell me he has locked the doors and its time for bed! :blush:

You asked if others had these feelings as well and I hope its a comfort to know you are not alone. Having a chronic illness can strip away our natural confidence and make us doubt everything we do. I have had black moments when I have said 'is this as good as it gets' but Im glad to say that so far I have always managed to pull myself out before things got too bad. Pulling oneself out doesnt just mean 'snapping' out of it. It also means being clever enough to recognise when we need help and going and getting that help - whether that be from a family member, friend, support group or medical professional or a combination of the lot!

I sincerely hope that you can find some way to lighten your emotional burden. You sure dont need to add it to your Lupus :hugbetter: If you need some help please talk to your doctor and see if he thinks you are in a depression. It sounds to me like a strong possibility Dee.

Well, Ive rambled on a bit and I better go and cook dinner (first time in four days :lol. I have a bit of energy today and for that Im thankful so Im looking forward to something nice to eat, putting my feet up and giving my little fella a great big sloppy kiss on his way to bed which he just hates :lol:

Much love Dee and please let us know how you are
Take care
Joan:rose:

 

[MamaLaiste]

Hi Dee,
I really do understand how you are feeling. I am at that same point again also. I hate the way my life is completely centered on whether or not I am feeling well. I hate the unpredictability of my lupus flares! And as was previously mentioned, the winters are absolutely the worst time of the year for me.

Each time I lay down, I pray to either not wake up, or to wake up better. Well, I keep waking up for some stupid reason, and rarely better it seems. But there is hope again. Spring, and warmer weather, is on it's way! And finally I have found a doctor that seems to understand and is taking an active role in my health care.

I am in a very loving relationship, my children are grown and healthy, my extended family are all well, I'm ok. No, I'm not healthy, nor out of constant pain, but I'm optomistic. I know it can't get much worse without my death, so it's gotta get better!
I start some new meds this week and then methotrexate next month.

Hang in there-- you will be better come spring.

 

[lazylegs]

Hi Dee,

It is good to have you back. Sorry it has to be because you are not feeling well .

I totally understand you feeling so down right now. When you don't feel well and are inactive all those doubts tend to creep in. It is something we all have to fight against from time to time.

I used to worry about my daughter's also. Now that they are grown I see that in the long run it made them the caring people they are today. Some of their fondest memories are of all of us in the bed making up stories, reading together or playing a game. They say their friends were jealous because I was home with them.

At the time they weren't thrilled about the chores, but have realized how prepared they were to live on their own when the time came. They were amazed at how lost other kids were when they went away to college. It was much easier for them in their careers also. They already understood priorities. So when I look back to those times when I was really ill, I don't think it hurt them at all. It was part of their education.

Right now you are the most important person in your daughter's life. It is important for her to be with you.

Take care,
Lazylegs

 

[flutterbye]

(((((Gentle hugs))))))))

Like others I can relate to those feelings, and in particular the 'guilt' that can be felt when it comes to our kids, I imagine that you are a great mum, I think we tend to be super tough on ourselves in a way we would never be on someone else!

I am glad that you could share how you are feeling with us, and hope that you might be able to share with others, your doctor perhaps just how you are feeling.

I do think this age with our kids can be a real worry, about whether we are doing our best, how things will all work out, it was certainly a time that I found difficult, if it helps any it does get easier as they get older, and as others have said my now strapping teenagers are pretty darn fab, with possibly a bit more insight into what it means to be human and compassion than they might otherwise have had.

There is no such thing as the perfect parent or upbringing, time and love have to be pretty important and I am sure your daughter has love from you by the truckload.

Best wishes x

 

[keebler]

Hi Dee,

Have you talked to your doctor and told him what you have said here? If not I encourage you to do that. Maybe a change with meds would help.

Your daughter loves you very much. Our children view life differently than we do as adults.

I have missed talking to you. I wish you and your daughter the best.
Love,
Lyn

 

[livingonaprayer]

Thanks to All!

I sit here in tears as I write this... not tears because I am sad, but because YOU all are so special! Thank you so much for taking the time to reply to my post and let me know that I am NOT alone and I am not crazy for feeling the way I do!

Thank you for All your kind words, gentle hugs and just taking the time to respond! It means sooooo much to me!!! I have forgotten the wonderful people that are on this site and I am so HAPPY that I returned in time to understand that I am not going nuts! LoL

I have been diagnosed with Depression and am currently on Medication for it. (Cymbalta) I have talked to both my Family doctor and my rhuematologist about the way I'm feeling, but my doctor is reluctant to put my on any different depression medication because of everything I already take for the Lupus/RA. She has asked that I see a psychiatrist to help with the depression and meds to see if they could help. Only problem with that is that everytime I have an appointment, they have either called to cancel and haven't called back to reschedule or I had to cancel because I was too ill to go in and they never call back to reschedule that way either.

I took alot of what you all said into my heart and realized that my daughter WOULD be devasted if I was not in her life. I asked her, "Would you miss Mommy if I were to go on Vacation for a week?" and she said, "Why, where are you going? Can I go with you? Please don't go Mommy, I want you to stay with me!" That did it for me! I gave her a HUGE hug and kiss and told her I wouldn't go anywhere and would always stay with her!

I can't say my "sad" feelings have passed, but I can say that I realize my daughter DOES need me and love me and I am not as worthless as I thought I was. And even though I don't have friends in person to visit with, I have the BEST friends ever, here in on this site!!

Thank you all once again for being here and helping me to cope at such a dark point in my life! I hope I can be the same good friend to all of you when you need one.

My love and well wishes go out to all of you! Thanks again my friends! :grhug:

Many Gentle Hugz,
~Dee

 

[Joandublin]

Hi Dee

Im really pleased that the responses have helped you to put things into a bit of perspective vis a vie your daughter. :hug:

I hope you can synchronise that psych appointment as soon as possible. There are any number of anti D meds that can be tried and that might be better suited to you at this time. What suits one person doesnt necessarily suit another. My own daughter had to try several different anti d meds before she found one that helped to lift her mood.

Stick with it Dee. Do everything you can to make that appointment happen. You deserve it and so does your little girl.

Here's to better days ahead for you both

Much love
Joan:rose:

 

[onetay]

Dee,
Hi nice to meet you sorry it is under these conditions. I wanted to share something with you and I hope you don't mind. I am in I guess they call it a special point of view, my mom had been sick since before I was born with a kidney disease. Now here I am with sle and adult children.

When I was 5yrs.old my grandmother sat me down and told me that my mom was sick and was going to die. I remembered that day still, it made me sad and angry. When my mom got home from the hospital, not knowing any better being 5 and all, I asked here how long we have? She was so shocked at my question. She told me she was very very sick and had been all her life. This I knew. That she was not planning on going anywhere as she had me so she had to stay and take care of me. She told me that I was her mircle baby, as she was never to have children. I remember grabbing her hand and telling her not to worry that I would always be here to take care of her. I did take care of my mom until she pasted away on July 27, 2001. I had a very close relationship with my mom because of her illness. When I found out I had lupus she laughed and said it is my turn to help you now. I remember replying no you are a grandma and that is what you do now enjoy having your grandkids around when you want them. Ok now I maybe sharing too much or boring people so I will get on with it. I would not of changed a thing nor would I of wished that I had a different life. My mom and I shared some very special times. I found out that I was stronge and that no matter what she and I would make it through anything, but death. I still struggle with her not being here. My daughter is very much like I was with my mom. She does all she can to take care of me and to help me. I have asked her, now that she is 20, if she would of rather had a different life? I laugh at her reply because it is much like mine, you are my mom and I love you, you have given up so much for me and my brother the least I can do is take care of you when you need me the most. You get one mother and grandmother your whole life. It is nice to be able to care for those that are for you. Honey put all your thoughts aside and now that your little girl would not change her life for anything. I have found that in most cases your children are your rock and you share something very very special with them.

 

[sunflowergirl2]

Dee, I'm so sorry to hear that you are feeling so awful.I'm sure your daughter is glad to have you around, even tho you're sick. It's great that you take her to and from school! This disease is awful, especially for someone as young as you. Wish I had more words of encouragement, but, just think about your daughter. On my worst days, I think about my granddaughters, and that's what keeps me going! Please e-mail me anytime, would be very glad to chat with you. Still waiting for those hot chips, LOL! Cathy

 

[helloos]

Everyone gave such great advice and I agree with all of them. You are a wonderful person and life has thrown many challenges your way with you have dealt with, with much grace. You are a helpful person and very cary and always there for everyone else....so with that being said....I just wanted to let you know you are "wrong" you do have friends. About a zillion right on this board....and count me in.

 

[lin]

(((((((((((Dee))))))))))))))) im so sorry i missed thias thread, butr so happy to see you got help, and you are such a good lovely person, now you take care of you

and anytime you want get things out do it here, thats why we all here to pick one another up, one big family thats us


sending you a (((((HUG))))) Luv Lin xxxxxxxx