New Member saying Hello!!!

I have mixed mctd, and live alone in the countryside. Alot of days i feel too ill or tired to go out or persue hobbies. I find it hard most of the time just coping with the housework and looking after my dog and cat. I get really depressed about my situation, and sometimes i wish it would all end. I don't want medication, i have tried lots of anti depressants, and they made me feel worse. Looking for others to share their ways of coping, if any. Also i would like to start a relationship, i don't want to be alone for the rest of my life. But i hate the way i feel, and i dread the thought of being and looking ill with someone, and wonder who would put it with a sick girlfriend when he could have a healthy one. I know its negative to think this way, but it feels true. Anyone who's not as negative a me or in a happy relationship i would like to hear from you too.
Thanks
jaci

(Jaci . . . I edited your post just to add a title so more people would see it)

Post Edited By Moderator (AlwaysRosie) : 5/3/2008 12:24:43 PM (GMT-6)

Hi Jaci,

   Welcome to the forum. You have come to a great place for support. It's so hard to cope with these diseases and can be even harder on our loved ones. You will find much helpful advice and kindness here.

   We have alot of members here who have wonderful marraiges and relationships. I live alone also but, I'm probably alot older than you and have gotten settled in my ways... .

   I'm fortunate to be able to work part-time so that keeps me going. I try to find things to occupy my time otherwise. We have a chat room here and a few of us go there often to talk about anything and have a few laughs. I also like watching a good movie, reading, and writing when my brain fog allows it..lol. Sometimes I force myself to go out and shop with a friend and end up having a great time.  I'm sure the others will suggest more fun things to do.

   I do get depressed, as we all do at times. When this happens, I let myself have a pity party and shed alot of tears for a couple of days. Then I start thinking I could be in alot worse shape like so many others and snap out of it.

   Know that you are not alone in this and we will help you in anyway we can. Please take care and keep us updated. You will be in my thoughts and prayers.

                                                    Babs

Hi Jaci, welcome. This is a great place filled with wonderful, caring, supportive people and we're glad you found us!

I work 32 hours a week and have for about a year now but before that I was full time. Does it wear me out, YES, do I wish I could stay home some days, YES but I know if I did, it wouldn't be good for me. Other than work, sunday school, hubby and 12 year old daughter I have a pretty quiet life. Right now I am in a flare so I am more exhausted than normal but I know this too shall pass and my family is very understanding.

I have been married for over 20 years, 15 of those years I was very healthy and active. I did everything for my family... cook, clean, laundry, shop, etc and now I can't. My hubby has been great through all this, he has picked up the slack for me. Now I am able to do more than when I first got sick but I still needs hubby's help.

I don't like taking all my meds but I know each one has a purpose and if I don't take them I cannot function, so I take a hand full every night after I eat. Do you see your doctor on a regular basis and does he/she have you on a good treatment plan?

Have you ever thought about volunteering just a couple hours a day/week? Hang in there and vent any time! Take care

Thankyou everyone for answering my e-mail. I really appreciate it. Most of the time reading your messages i had tears in my eyes, not just for myself, but for all of you as well.

I am feeling frustrated and depressed right now, not to mention lonely. I have been ill since i was 22, and i am now 41.I loved working, but feel too tired most days to even tidy the house and do the shopping. I am existing, but not really living.

I know its a struggle for a lot of people, somehow i thought i would cope better than i do.

I do take medication for the illness,prednisolone and cellcept, but i can.t say i feel much better for it, apart from less joint pain. Last year i had kidney problems, then my colon ruptured, so things seem to be progressing. This year i'm having breathing problems. I have just had my heart checked, still waiting on results, and next week i'm having my lungs checked.

The stress and depreesion i feel at times becomes unbearable.I have never had any support from my family, and my fewf riends i have left don.t really understand, and usually tire me out more.

If i tried working again i would have to earn a lot of money just to get by, and i don.t think i could manage that.

Thanks for all your ideas on hobbies and crafts and online studying, hopefully with summer on its way i will start to feel a little better. I do have my own kiln and wheel at home for making pottery, and keep thiking i would like to start that again, but i rarely have much energy, and when i do, it goes on the things i need to do.

Thanks again everone, you have been so kind in sharing your stories.

jaci

Hi Jaci. I was married twice (don't want to try that again!) and now live with my boyfriend.  We met when I was 42, my pets and I moved into his house when I was 44. Lupus symptoms started a few months after I moved in. He has never been married or have a live in- I move in and start complaining of depression, pain, neurological problems and get diagnosed with "somatiform disorder" (crazy). I kept complaining and searching for a diagnosis. I attempted suicide once and will never try that again! (Mental health hospitals really, really suck.) Now, the moment I'm feeling suicidal I call my psychiatrist and get my meds adjusted.  My boyfriend stays steadfast at my side even when I whine that he could do so much better. Sooo, don't think that no man would want you. Anyway, I sincerely hope you talk with your physician about depression. It's a horrible feeling that can lead to death. Your doggie and kitty would miss you. Also, we develop friendships here on the forum and we are already looking forward to hearing from you again! Love, Butterflake

Thankyou all, so much. You are all such lovely people. Pity we didn't all live in the same village.I would invite you all round for dinner (though it would probably be self service)

I have seen my doctor once in the last year about depression, i sat in his office just crying for around 10 minutes. I can't even remember what either of us said i was so down.Eventually he sent me into another room with a glass of orange, to pull myself together before facing the outside world. I felt worse for not being able to controll my emotions.The subject has never been brought up again.

Thanks for your story butterflake, it has given me a bit of comfort knowing you found someone who loves you just as you are. Around the same age also. I wish you all the best in your relationship. Doctors took years to diagnose my illness, and thought i was depressed (which i am ) but i can.t handle anti depressants, for some reason i have felt even more depressed on them. It is possible its because i have liver damage from this illness, or i have some kind of intolerance. One of the immune suppressant drugs made me really ill, and that was after only one dose. I ended up in hospital i was so sick.

The dog and cat story was funny...thanks. I almost believed it for a minute. Wouldn't it be good if they did clean up and meke tea. I.m sure every family would have them.

Hope to jpin some of you in the chat room in the near future.

Evey one of your stories and advice has touched my heart.

jaci

I will offer you some hope on the relationship front as well since I am so blessed in my husband. I was married once before to a horrible abusive man. I became isolated and even my family did not believe me when I tried to ask for help. I had one friend left after he was through driving them all away. She helped me to get away from him and get my daughters out. I was unable to get custody but I was able to make sure he can never see them again and that I can see them. But that is another story. After I left my ex I had no place to go really and no skills. Worse, I had been ill for years and barely had a high school diploma. I got lucky in one thing, within a month of leaving him I went into a spontaneous remission. I also got lucky in the friends my best friend from high school introduced me to. When I had to move again due to stalking one of them, the man I would eventually marry, offered to help me. I moved to a new state and stayed with him until an opening was available in a local shelter that I had been told offered help getting job training and evetually in job placement. It turned out to be a bad situation. Eddie said I should come live with him and look for work with the skills I had picked up from him and the classes I had been allowed to take. I found work almost immediately. But I soon lost my remission and became ill. I had warned him I was not well and had no clue when the problems would return. By the time this happened we were extremely close, actually we were falling in love. He could have cared less his only concern was that I would be okay. There is a lot of stuff that happened in the middle including the death of our son and my nearly dying, but today we are still together. He gave up living in his home town for me, so I could get decent medical care. He even faced down his mother, who hates me, to be with me. He has never blamed me for being sick, he has alway been understanding and supportive. Heck he pushed me to follow my dreams and go to college. Now I am in grad school and about to have a baby. He has made it clear he will do whatever it takes so I can continue my educations. Add to that he adores my daughters and is very good with them and you can see how I can feel blessed he loves me. There are men out there who will love you for who you are not what you can do or what you look like. I was lucky enough to find one. The funny part was I was not looking and had decided to have nothing to do with relationships ever again. We will have been married for 7 years come July and together for 9 years in December. I am so glad that my friend introduced us, in doing so she made it possible for me to know what it is like to be loved unconditionally- something I had never had before since in my family love always comes with strings.

jaci, with the plaquenil, some people get a bad reaction from the generic (itching) but do okay on the brand name. I don't know if you took the brand name or the generic, but it might be worth looking into it. It doeas take a little while to get into your system. My heart goes out to you and I'm so sorry you don't have support from your family and that your friends don't really understand. It is a really hard disease for healthy people to understand. Hang in there and know whe are here for you.