I have been battling lupus for a decade and probably my whole life, looking back. I am a 46 yo male who has had to stop working and am currently receiving disability for which I feel guilty for doing, especially on good days. I loved working and was always considered a top performer at work. During the recession I was one of the first to be let go and I tried finding employment and even attempted starting my own business which failed because I couldn’t start/complete projects due to my illness. Thankfully my wife has a good job that pays well, so we weren’t forced into bankruptcy. All of this has taken a toll on my wife and daughters, as well as myself and my self esteem. A recent cancer scare and current heart problems have only added fuel to the fire. My wife has been very supportive, but my grouchy behavior when over doing it and when experiencing cluster headaches has not helped me and there seems to be a disconnect between my wife and myself. My best defense up till now has been to try to forget the bad days and try not to even talk about what this terrible disease has taken from me. I feel that my wife over worries and that it has driven a wedge of resentment between us for something I have no control over. Any help or advice from anyone would be appreciated and deeply needed at this point. Thanks for taking the time to read my lengthy post, Ken.
Ken,
I could be wrong but it sounds like you have not accepted your illness and that you blame yourself for it. This is what impacts your self-esteem and your relationships. It sounds as if you feel that you should be contributing more than perhaps you can under your current circumstances and you are full of guilt.
Yet, you state that your wife has been very supportive. You also state your grouchy behavior when you over do it or when you get cluster headaches and that your only defense up until now has been trying not to talk about what this disease has taken away from you. I hear a lot of anger in that statement. Of course your wife worries about you, she love you and cares about you.
So my question to you is... how would you feel toward your wife or your daughter if one of them were sick? Would you question their worth? Of course not! Would you be worried and concerned? Yes, I think so. I think your resentment is towards yourself. However, I assure you, YOU are not your illness. Your illness is just a part of who you are. YOU are still a person of value and worthy of love and caring.
You stated that you were a high performer at work but were unable to start your own business due to your illness. If you are receiving disability, keep in mind, you are contributing. However, I suggest that you find something that is of interest to you to work on when you are up to it. A hobby of some sort. I don't know your background so I can't suggest anything.
Yes, your illness has taken a great deal away from you and you will have times of anger and resentment. Try to find something, anything, good that you can think of that has come out of it all. I realize that is hard to do at times.
As for my life, I struggle with a lot of the same feelings. I finally just filed for disability, which was hard for me to do but I also have Trigeminal Neuralgia and Migraines. I have a daughter with Lupus and a daughter with MS. I have had a tough time with depression but am working really hard on that because I need to show my daughters that living through difficulty can be done.
Good Luck
Cathy In MD
P.S. I took up jewelry making, probably not up your alley, LOL
Thanks Cathy, I believe there’s some truth to what you are saying and thanks for being honest. I definitely have some things to work on with myself and coming to grips with the complexity of my illness instead of trying to ignore them, will help me to cope better. I have started a new hobby that gets me outdoors more and is less strenuous on the body, flying model airplanes has always been an interest of mine, so now I have started and am enjoying it and generally feel better when I get the chance to go. Thanks again, Ken. PS Good luck on getting your disability approved, don’t let them discourage you.
Ken,
I assure you, we are ALL working on things here, both physically and mentally/emotionally. It is only part of the reason why we can relate to each other. Of course, the other is that we face many of the same feelings, symptoms, frustrations, etc.
This really is a great community of people and I think you will find a lot of information and support here as you move through your journey.
The idea of flying model airplanes sounds like a great idea!
Keep it up!
Cathy
Ken,
Although I am considerably older than you, I have recently had a heart attack, open heart surgery, and then diagnosed with lupus.
Believe me, since I have been unable to work, (general contractor) it really makes you question your self worth. If not for my wife who was by my side 24/7 since all this fiasco, don’t know where I’d be!
You hang in there, there will be good days & bad but appreciate the good ones you do get.
Jim
Thanks Jim, I was in a similar situation, my plans of having my own business as a paint contractor after many years of hard work building a clientele, licensing, equipment. Watching it melt away and having to give away my customers was hard to take, but I knew I couldn’t keep going the way I was. The cluster headaches went from every few years to chronic and my lupus went crazy from being off my immune suppression drugs after having carpal tunnel surgery on both hands. The good news is I finally found competent doctors who know what they are talking about and have got me on the right path and have made my situation more manageable. My advice to any new lupus patients is to find a good doctor and don’t settle for anyone if you feel your not getting good treatment.
I can relate to your feelings. I had my own practice that I had worked hard at getting going and was just finished paying off the start up costs when I had to give it up. When I finally got back to where I could work I took care of my parents for a few years until their passing. By then I figured that it would take me too long to get my practice back up to paying for itself so I looked for something else to do. I started teaching and was enjoying it and felt like I was doing some good. I got an infection of flesh eating bacteria and lost my leg. When I finally got to where I could walk and move around I started tutoring and counselling on a volunteer bases. Then I fell and bruised my hip and I just wasn't healing. My doctor sent me to pt for massage and strengthening, but the therapistI "knew" better and did stretching during which time she re-bruised my hip and made it worse. I am now confined most of the time to a wheelchair. I was feeling so exhausted and in a lot of pain most of the time after loosing the leg I finally told my doctor how bad it was after the re-bruising. He had been told to watch me for signs of lupus after all the problems I had with the bacterial infection. He had been running a panel of tests every six months and they had been coming up mostly positive but since I wasn't complaining about any of the symptoms he was praying that it was just a hang on from the reactions to all the drugs that I had had. He then told me that he was pretty sure I had lupus. It is nice to know that there is a reason for my feeling so bad but going from the one that did all the housework and cooking to needing help to just take a shower, has not been easy. My husband has been very supportive through it all but he isn't as young as he once was and it is wearing on him I can tell. He is working 50 hour weeks right now and then having to come home and take care of me I feel guilty about it my self. I'm doing some phone crisis counselling but sometimes that is almost too draining for me. I know that I have to do it though or I would fall into a deep dark hole of depression that I might not be able to come out of.
I recommend finding something that you can do that helps you feel like you are giving to someone. Maybe just writing letters to our service men or being a pen pal to a school kid that needs a friend. As humans it is in giving we feel some worth. If we feel no worth then we have a tendency to become self destructive.