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Regular Member

Date Joined Apr 2007
Total Posts : 39
   Posted 1/19/2009 5:02 PM (GMT -6)   

I know this isn’t an easy question to answer, I’m just looking for some help. My question is how does everyone else deal with the disappointment and guilt? At the end of a weekend I find myself apologizing to my husband because we couldn’t do all the things we wanted which wasn’t much to begin with. Even when we do get out for a short errand I’m pushing through it not enjoying a moment because I feel so miserable.  My husband is very supportive and understanding but for some reason that doesn’t make me feel any better. I am very sick and I’m getting worse which is making me sad. I’m going to be starting a new treatment plan soon, but I don’t want to keep telling myself that it will get better then, because I’ve been telling myself that for 7 years now and it isn’t any better. I have to figure out how to live with who I am now and I don’t know how. I don’t like who I am now and I can’t stand my limitations. I can’t imagine the rest of my life being like this but I have to face that it is not up to me.  I am scared, confused, angry and lost. I don't know how to help myself through this.  I’ve thought about support groups but I’m not very social anymore, just posting this is a huge step for me. Any advice would be appreciated. Thanks for listening.


Dx:  Lupus, Hashimotos Thyroiditis, Peripheral & Autonomic Neuropathy, Fibromyalgia, Arthritis, Relapsing Polychondritis, GERD, B12 deficiency
Rx:  Plaquenil, Levoxyl, Lyrica, Flexeril, Tramadol, Hydrocodone, Lasix, Lunesta, Ativan, Prilosec, B12 injections 

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 1/19/2009 11:07 PM (GMT -6)   

Living with a chronic disese is hard, I know, I can relate. Living with a disease like lupus which is an invisible disease and comes with many over lapping diseases is even harder because many times others, even our loved ones do not understand what we are going through. The fact that you have a husband that is understanding and supportive is wonderful, you really need to count your blessings. You might want to discuss the difficulties you are having with guilt with your doctor. I was having many of the same feelings when I had to stop working, I had a lot of guilt and stress because I had a really good job and while my husband makes a good living for us, I did not want to place all the burden on him. The guilt and stress I was placing on myself was actually making my disease worse. My rheumy told me I needed to let go of some of it because all the medicine in the word was not going to help if it didn't stop beating myself up. He prescribed me an antidepressant and anti-anxiety medicine, which I was extremely relucant to take. In my mind I was too strong of a person to take these medicines, I am an educated person, I should be able to overcome this, right? Wrong! I finally gave in, because with each passing day I was heading down hill, getting worse and worse and truly heading deeper in depression because of all the things I could no longer do.

The thing is, we need to focus on what we can do, and if these medicines give is more good days, then so be it. Please, talk to your doctor, if you need medicine to get your through this rough time and help you have better days please consider it. I still have bad days, but the good days are out weighing the bad and while I cannot do the things I used to my family and I have found new things we can do together and the fact that my attitude has improved and I am improving makes all the difference in the world. The fact that you can spend quality time together is what matters. Find quality things to do together that you both enjoy!

Best of luck to you. There is a bright side to this, you just need to discuss your options with you doctor and find that right solution for you.

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 1/20/2009 9:28 AM (GMT -6)   
Living with a chronic disease or disability is never easy and most of us need help.  I believe that going to support groups is the best solution for most.  It has helped me to accept what I have and realize that my diseases are NOT my life and to accept what I have.  I have defined a new normal and moved on.  Life is good again.  Just 3 years ago I was totally crippled by polymyositis, a quadriplegic and could not swallow, but today I am living a fairly normal and active life again.  Not the same as before but good nonetheless.
Taking drugs for depression might be necessary but I doubt that they will give you the wisdom to accept your situation and move on with your life in a new normal fashion.
Hope you can take the leap and attend a support meeting.  You might also consider seeing a psychologist to help.  You feel unique and alone but you are not.  Many have traveled your path before you and can help you find the way.

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 1/20/2009 9:29 AM (GMT -6)   
Its hard hon. One of the things I do cuz its so hard for the other person to understand, even though they are supportive, is I do freelance poetry. I express all my emotions in poetry. You have to let out the emotions hun, whether here or through another way. It eats you if you dont. I've told my mom and my man to kill me (but at the time I was hanging over the john). I also tell them to go without me. Its hard,, so hard, but doable. We cant function normal, but also do what you can...when you are up to it. Dont let yourself feel hopeless.
Smurfy Shadow
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndroe, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux

Regular Member

Date Joined Sep 2005
Total Posts : 250
   Posted 1/20/2009 12:22 PM (GMT -6)   
This thread is very inspiring. It speaks to just about everything I've been dealing with during the past few weeks. No one is a fortress and everyone has strong times and times of weakness. No one can be strong 100 percent of the time. I need to remember that too. .
Take care, peachy
Diagnosed with lupus in May 2005. Daily Medications: Prednisone, 5 mg; Imuran, 50mg 2x a day; Warfarin, 5 mg / day; Zoloft, 100 mg / day; Plaquanil, 200 mg 2x a day; Nexium, 20 mg / day; Tramadol, 50 mg 2x a day (as needed) and Tylenol. Supplements: 1500mg calcium; 2000 IU of Vitamin D; 400mg magnesium; Centrum Silver (and I am 30!)

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 1/20/2009 1:35 PM (GMT -6)   

Catzz- thank you for your post.  Your words touched me deeply as I feel exactly that way when things get bad.  I don't have any answers - but there was a lot of wisdom in the other responses.   I think recognizing that we grieve for what we have lost is important.  That grief will take different forms at different times (sorrow, anger, guilt, depression, etc.) and sometimes when they gang up on us we need help.  Finding others who understand what it all means may be the most helpful.  I'm not so social anymore, either, but I wish there was a support group locally - I sure would give it a try.  This forum is the next best thing.  You said posting here was a big step...Good for you!....just keep taking one after another.  (((Hugs)))


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 1/20/2009 7:29 PM (GMT -6)   

You've asked an important question that probably has many answers, depending on who you ask. For me, it took a long time, a wonderful family, this support group here on HW, and a very fine therapist. I think the light really came on for me when I realized that if this is all I have, then I was going to make the best of if. At 60, I'm entering into the beginning of the twilight years and by golly, they are going to be happy ones. There are no re-dos here. No second chances.

I hope you find your answer and I also hope you'll continue to be a part of this group.

SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Apr 2007
Total Posts : 39
   Posted 1/28/2009 7:31 PM (GMT -6)   
Thank you all very much for the advice. What everyone has said makes a great deal of sense to me. I need to keep trying new things and see what works for me. I like the idea of a "new normal".  I know that will take some time and it won't happen unless I change some things. I was lucky enough to find a local lupus support group. It meets monthly only 10 miles away, and I plan to attend the next meeting.  Thanks again for the encouragement.
Dx:  Lupus, Hashimotos Thyroiditis, Peripheral & Autonomic Neuropathy, Fibromyalgia, Arthritis, Relapsing Polychondritis, GERD, B12 deficiency
Rx:  Plaquenil, Levoxyl, Lyrica, Flexeril, Tramadol, Hydrocodone, Lasix, Lunesta, Ativan, Prilosec, B12 injections 

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