While I am certain women have many of these same feelings, I think men have a harder time dealing with my current frustrations. For 20 years I was an eletro-mechanical technician with and electronic engineering degree. I absolutely loved being a field technician. I loved the income, I loved the freedom, I lovd the satisfaction of conquering problems.
Well, those days are gone. The effects SLE has had on my cognitive functions have pulled me from bring talented enough to be a service manager to being a slow and unreliable technician. Even while I had retained the energy to work full time, I made so may errors in the field the company owner thought I was screwing up on purpose. So, my lifelong career is gone.
I started a business repairing appliances, far simpler mchines than what I use to fix, with the service calls infrewuent enough that I can take my time and triple check myself to eliminate dumb mistakes. To make ends meet, I took a job as a clerk at the local 711, midnights 4 nights a week.
But now, I am simpler sicker than I was a year ago and can no longer work that many shifts. It is terribly upsetting to find myself being able to do less and less and less to support my family. I've gone from main bread winner, despite my wife's good income, to very nearly a burden on our finances.
And so I'm home alot... I can find other ways to help, right? Cooking, cleaning, projects... and I did, for awhile... but now I'm too tired, too hurting or, at the worst times, simply too confused to get things done around the house.
I'm not giving up, mind you. I have a voice many find incredibly soothing so I am invertigating voice over work, hoping I have a hidden talent for voice acting. Maybe I'll finally finish the book I've been writing for 12 years. There are always options.... but man, it's hard seeing my input in my home grow less and less physical, hard watching my youngest through a window while he play out in the yard under the poison sun. Hard, too, letting some greedy mechanic charge me 30 times what I wouldspend had I the energy to do the repair myself.
I don't mean this in an offensive way, ladies, I understand you all have the same wants and needs, so please don't gt mad when I say the following.... this disease is emasculating. And sometimes, like today, it all gets to be a bit too much.
Thanks for letting me whine.
i just re-read this... my apologies for the terrible typing... i use to type so well... lol....
I think youre not the only male with these feelings, as a diesel tech for many years it is very hard to watch other people carry my load around the house, I thought it would be better once i got my ssd established with monetary input but it isnt,my teeanager doesnt have a clue when it comes to lupus(I dont think he wants to know), I feel if the people around me(not my immediate family) think Im just flat out lazy since ive managed to gain 60 lbs from steriods,,Im not sure but i think its because they cant imagine some of pain presented in my back and major joints let alone with having to deal with nephrology, all i can say is keep your head up
I have many of the same problems Bruce.
Hi guys, Im really sorry this is happening. Im a 26 year old web developer, computer science degree.
I have a good career, no wife yet, but had lupus for 13 years now.
Reading all these, i just cant help but to wonder if this will happen to me.
If so, are there any pointers, advice for when it does.
What are your coping techniques.
Having lupus is bad enough,friends and family deserting you when you need them is the worst thing.
And Losing you career that you have worked so hard to achieve is HELL!
So please, im rather in a place where i think this might happen to me as well.
Any thoughts, suggestions?
I try to stay busy, have hobbies, and talk to others with lupus. I try to enjoy my good days, and push through the bad ones. Other than that, I'm afraid my coping skills are not very good.
I understand totally what all of you are saying. I have an electrical engineering degree and work as a maintenance manager in a steel mill. It is a very demanding job where I at times would be needed there to get a line running. I would on occasions be there for 24-29 hrs straight. Now I am the only manager on FMLA in the whole corporation worldwide and only work 8hrs at a time and no longer get evening calls (which is a blessing).
The problem is...sometimes you get to feeling like a loser and that everyone has to carry you. I also have gained about 80 lbs from steroids. The only thing that I have to drive me is at 43yrs old, trying to get my finances in order so I can sell my house and try to get to california into a trailer or something and get on ssd. My wife luckily has been a saint. She is very understanding but it also puts a lot of stress on her with her not being able to do anything with my pain but sit back and watch. This is not what she signed up for 3 years ago (this is my second marriage) and it makes me feel extremely guilty. I have always been one to be the tough and bullish guy and some little unseen thing like Lupus, Myositis, FM, and sleep apnea (none of which you can visibly see) can bring me to my knees and kick my @%&!
I know that people just see me as a big, fat, lazy pig (I am 6'2" and 280#) instead of someone that just had the misfortune of a bad hand at the poker of life.
Enough of my stuff...I am always here if anyone needs to vent. I just have been in and out as I have been having a lot of problems getting my teenages to understand that stress is a mad thing to me and as a result, have been having multiple flares. They know now.
Cheers to being painfree all!
Sending you all gentle hugs.
I know exactly how you feel in my carreer it took me ten years to get where I wanted to be and with in three
years I started missng alot of work just couldnt get out of bed and then most the time would foget how or why I
was at work so anyways when I finally got on SSI I thought i'd feel better but didnt felt less of man and that I was leting my
family down and I stil stugle with that so your ot alone sorry or caring on its just good to find theres others out there with same
prob. that I can talk with!!!!;-p