Hi Anita Lynn and to you to Tori,
I have had lupus for approximately 21 yrs and now it is highly possible I may have MS too. Actually they seem to think the worst of my symptoms may be MS now instead of lupus. Anyway, I can certainly understand how you both feel. You feel useless to yourself, so of course you would feel useless to anyone else. You feel it is always something that will not let you have some good days. If it's not pain, then it's fatigue, if not fatigue, then it's something else popping up. It is always with you, never lets you have a moments peace. Of course ppl who do not have an illness such as this cannot understand what either of you or myself go through. Just like someone with cancer, if we don't have it, then we don't know what they go through. But there is empathy, which ppl should realize you are sick and cannot be the person you once were. Sometimes they don't, & I don't have the answers for those that think you may be a hypochrondriac or can't possibly believe you are that fatigued and will say "you are depressed". Well, of course you are depressed. A chronic illness would make anyone be depressed at some time and yes, maybe all the time. You do get so tired of waking up every day either in so much pain or have so much fatigue it is a chore to go to the bathroom. I too have those days where I had just as soon wet the bed as to have to get up.
If it wasn't for my grandchildren, I don't know if I would still be here. If I did something to myself, how could they ever forgive me or maybe even themselves. And my daughter, who moved 8 hrs away 2 yrs ago, she would blame herself for not being here for me. I could never hurt them that way. Think about how your children would feel if something should happen to you. I'm not saying you may be suicidal, but it's so easy to want to end your suffering when you just feel there's nothing to help you. Believe me, you both still have so much to give to them. Even if you can't do the things you want to with them, they still need you to be there for them. Just to talk to you and listen to your advice of if very little, to have you tell them stories or be their security. See, to them, you are the greatest, they don't care if you're sick, they still see you as their parent and need you.
The one thing that helped me a lot when I was first dxed with lupus was a support group. Not one that I found and started going to, but the one I started. I decided after a couple of months of crying and feeling very sorry for myself, that I had this disease for a reason. For what reason, I didn't know at the time, but I did know if I did nothing, then I was suffering for nothing. It's sort of like fighting back, staring your disease in the face and saying, "you're not going to take me down". I ran an ad in the paper and found that lots of ppl in my area had lupus and were suffering just like me & they all felt they had no one that understood them. I met wonderful ppl and we all wanted the same thing. A cure. Even though for most of us, we knew it might not be in time to help us, but for our children or grandchildren to keep them from suffering like we do. We had ppl from age 15 to 92 and just maybe there was something we could do after all. We did fund raisers, we did health fairs, we had dinners and birthday parties and really got to know one another and there was our ppl who cared about each other. I kept this group going for 3 yrs. I got to sick for a while and we had to stop, but I want to start it back up because again, I still feel if I don't do something, then I have this disease for nothing. So, if there isn't a support group near you, then start one. You will be surprised at how much listening to others and thinking of them will take your mind off yourself. It was a great feeling to know we had collected money that we could help someone buy their medicine who had to stop work and was not approved for disability yet. Yes, it's great to give money for research, but I also think we have to help those who need help right now.
I moved from where I had lived for 25 yrs to be near my family because I thought they would help me. My husband is also disabled and we really needed help, financially, physically and emotionally. Well, I have 2 brothers and 4 sisters who all live within 3 miles of me and you know what they have done for me or for us in 11 yrs. One sister has cooked a meal for us, maybe 2 times. No one has ever offered to clean my house or do my laundry or just come and keep me company. Lately, I needed to go to the ER and my husband wasn't at home. I called my oldest sister so she could come and take me. She sent my nephew, who I don't really know & have only seen 2 times in 11 yrs. She knew I needed help getting dressed as I had tried to take a shower and became very ill. So, as you can see, we have to help ourselves. Like I said, no one can understand how you feel, unless it's someone who has MS.
I hope I have helped you in some way. It's okay to have pity parties, sometimes you need them. Just don't stay at that party to long. Think about it and I know these ppl on this site really do care, so if you can't get to a local group or you can't start one yourself, then come here and pour your heart out. They will listen.