First of all I am so glad that I found this web site. I was wondering if I could ask your opinion or if anybody had similar experience.
•My partner David is suffering from SLE, back pain, heart problem – (unknown reason, not connected with lupus) he has terrible nightmares that wake him up constantly during night time and he is an alcoholic and smoker.
•Despite all this he is working full time (also involved physical work)! He is living in a council house, but paying the rent.
•Lupus is severe, there are better days that he can actually walk and function but there are days he is very much in pain and depressed.
•We were never in a situation where we had to claim benefits, see specialist doctor or even claim sick pay. Both always worked full time and made our living.
It seems like everything we do is just not enough.
David was diagnosed with Lupus in autumn 2011 after very bad experience with his GP (he didn’t refer him for months, it was so bad he landed in a hospital). He was taking all the drugs, well, still taking some!
The rash on his face is constant and hair loss (although he is not so bothered about it much.. as he says it’s just cosmetic). The main thing is pain. Wrists, knees, bones, fatigue, tiredness. Worst of all depression when flare up.
I can’t make him leave his job because he got used to salary and nothing will convince him to quit. And the stress there is killing him. Literally. He cant think about anything else, he talks about it all the time, he has nightmares about it.
Also we had bad experience with housing benefit system because when it all started David was off work for 3 weeks and he couldn’t pay the rent(type of the guy who carpe diem- don’t save the money). Because it was fresh we gave the hospital letters etc. Housing officer concluded that the application was too late So what that you have lupus if you went back to work. After this I became angrier at the system. So what should I do? Write to them before I get sick and beforehand educate what is lupus? Are housing officers of more evidence than doctors’ letters? When you are sick for 2-3 days are you in title to sick pay? Is it true that you need self-certificate when you are off work for more than a week and if you need doctors note you have to pay for it? If anyone has an answer please let me know. It is so hard with all those web sites and doctors to get to the bottom of it.
I know that lupus gets to people, it makes you depressed and you don’t feel good about yourself. Constant pain, can’t get rid of it. If one thing stops, next starts. And the next circle.
Because David is an alcoholic it is doubled. I couldn’t stand it anymore, I had to move out. It is too difficult to see the man that you love getting drunk and treat you bad and then you feel awful because you want to help him.
And I can’t. He doesn’t want to change anything. He wants to get better, but he can’t, things are worse because of his job, if he won’t get the salary his dog will not get the meds and he won’t have the money for beers. He won’t stop drinking because it won’t get better so might as well drink and die.
Now his back hurts, knees clicking, wrists are bad as well. He hasn’t been at work for a while. The rent is not paid; he doesn’t have the money to live on. Sometimes I think I am more stressed than him, because I get more stress that he is stressed. I just don’t know what to do.
Any comments welcome.