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Hoping for better days
Anon_231862 posted:
Hello. I am new to the online discussion experience. Lately, I have had some things on my mind but no one to talk to.

I have had a tough time medically since '97. Only now being 26 yr. old and having been diagnosed with encephalitis, multiple sclerosis and now lupus and congestive heart failure, I guess I have gone through the ringer. The first two diagnoses have been dismissed and now it is just lupus and CHF.

For a while now, I have been dealing with what I think is depression. But it doesn't seem to be solely related to the symptoms of Lupus and CHF. It's other things. What is my life going to be like in the future? How am I going to be in a relationship and be close to someone? Am I still going to be able to work years from now? I find that I isolate myself from others. I'm too tired to do much of anything. When I am have a decent day and feel like going out, I can only do one thing before getting really tired and have to go back home to rest.

Right now, work is ok and I enjoy what I do. But that's all that I really have the energy to do. I feel that I am just going through the motions - I'm just HERE and nothing more. Sometime I feel that I probably need to seek counseling, but other times I think that the way I'm feeling is not as serious as I perceive it to be. If I were my therapist/counselor, I would tell me to get over it - it could be worse, much worse. This is how I feel.

Is there anyone else out there who has experienced this or something similar.
Julendo responded:
I would say you definitely are depressed, and that your depression is probably a bigger obstacle to having a relationship even than your physical illnesses. As for work, that is less dependent on your mood but being so depressed certainly won't make things any easier.

I have felt like you do, in my case things just got better with time but maybe it wouldn't have taken so long if I had gotten help. No decent therapist will tell you to get over it. If you feel that counseling might help you should definitely give it a try.
Lupylisa44 responded:
It sounds like you have some anxiety about what the future will bring. Unfortunately with a disease like lupus you have to take it day by day. I have had lupus for 27 years and can tell you that I have had a wonderful and full life. Sure, there have been periods of extreme lows and severe illness, and I have come close to dying a few times, but there has also been times that are great!

My experience with lupus, and all the other conditions I have, have made me a stronger person who appreciates every good day I get! Having a positive attitude is very important! As a matter of fact, I think it is THE most important thing!

Hang in there! Take things as they come and don't run to far down the road with what if's.

This board is a great place to come vent your feelings and frustrations and to make some great friends!

With love, with patience and with faith, we'll make our way.
anowlin responded:
I had mega health problems; but it wasn't until I was diagnosed with lupus that I considered counseling and went for 13 years. My experience in counseling was (at the least different), but I developed an insight during that time, that has stood me in good stead.

Just the past few weeks I've come to grips that I'll never be the athletic 'skinny minny' again. i'm a poor surgical risk. I'm always seeing a different 'ologist. Because lupus attacked my ovaries, I deveoped premature ovarian failure and to my minute to minute sadness, I have no children. Mega complication in life due to no children.

I'm reminded of the losses daily and daily, it seems there's a new diagnosis which brings another set of losses. To cope, I joined online groups for side effects from the steroids I was given for lupus (Osteonecrosis) and I'm sure you can find a support group for anything, I've developed a lupus/autoimmune/chronic illness blog.

I started freelance writing and spend as much time being productive as I can. Annie
anowlin responded:
I think counseling can give you the tools to revising your life, tools to being, not just being in a relationship; but a successful relationship, a rewarding relationship. A lupus diagnosis does not prevent you from having relationships with a lot of people and a romantic relationship.

However, lupus makes being in those relationships harder and since it's harder for you. It also makes it harder for the other person. If you can learn some tools to having a relationship (like what is preventing a rewarding relationship, (like, is it self-esteem?), you may learn things about yourself that may make you more attractive to someone else.

Not superficial things like pretty earrings and nice clothes, but something that may be preventing the TRUE YOU from coming out when you meet people.
Christine Miserandino replied to Lupylisa44's response:
Lupylisa44 and all the others gave great advice. It is very hard to stay positive despite having an illness that can really bring you down sometimes. Everyone else gave such great advice... I would just add that something that has really helped me has been doing a gratitude journal. I write three things every day that I am grateful for. Some days when I am feeling good and I am not in a lupus flare it is easy! Other days it is harder... but now it has almost become a game to me.. and always cheers me up a bit to try and refocus. I write in the jurnal too before bed so that aybe I can sleep with some better thoughts in my head. So sometimes I can write I am grateful I walked around the park! But yes, other days I am just grateful for a nice hot shower, or a song on the radio, or even just being able to get on the computer and "talk" to some friends.

Until next time....
Love and Spoons ,

With Lupus

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