help needed, how to change life?

[lupusbutterfly]

Hi All

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.

Few facts:

• 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.

Thank you

Lin

[gertie]

Hi Lupus butterfly,

I can feel your worry and pain and frustration for the man you love in your writings. From what you have written it seems your partner is stuck in a vicious cycle and is probably in some form of denial about his illness...this is quite common for people who suffer from Lupus and excessive drinking will only make his health worse. As you are well aware you can not force anyone to do anything they dont wish to do...so please look after yourself and consider your own needs and health too.

A few things for your consideration:

Does your partner have a works pension...if his health is so bad his employer may consider early retirement for him?

If he had to give up work due to his illness he maybe entitled to ESA, housing benefit, council tax and DLA (info on direct gov.uk)

You can self certify for 7 days being off sick from work after that you need a doctors note, tell your partner to go and see his doctor, he may back date his sick note if he is aware he has been ill

if you partner is not currently in work due to his illness he maybe able to claim statutory sick pay, look on the direct gov site for further info.

You partner really needs to start communicating with his GP, Consultants, housing etc...I know it may be very difficult for him to do with his illness and depression but from personal experience when you have an illness unfortunately you have to fight twice as hard and appeal almost every initial decision.

I hope this help

G

[MandieR]

bless you.....I havnt got the time right now to write and in depth reply but i will do it over the weekend to you

in the mean time try to keep your chin up and stay as positive as you possibly can xxx

[medic1969]

Hi I have had lupus related connective tissue disorder for many years and experience all the symptoms your partner has and then some and have required multiple inpatient visit. Like you partner I to work full time and this is what keeps me sane, despite how I'll it makes me feel, if I stop then lupus has won, or thats how think, in your partners case this may exacerbate his drinking which will do far more damage, a good gp will backdate sickness certs especially if made aware of all the potential problems for your man, because of his condition he should be protected under the disability discrimination act, and his employer should try and find Him alternative deployment within the organisation and hopefully within the same pay structure. Fingers crossed mate.

[lupusbutterfly in reply to medic1969]

I think David thinks the same, that if he stops working, lupus will win.

thank you very much for your comment, that is very helpful.

[Jaxqueline]

You sound such a strong positive person. We are surrounded by people who don't understand Lupus and you seem to have such empathy.

Horrible suggestion but how about counselling? I hated the idea of it but it got me off the circle of no hope. I used to think "what's the point?" but now I am much more positive.

Hope you are looking after yourself because looking after a lupie is hard let alone an alcoholic. There is help out there, be strong and use it.

Take care and keep in touch. x

[Maddieroo]

Please take the wise advice from the other posters and take care of yourself first. Even if there was something you could do to help your partner with housing, etc., he is an alcoholic and not dealing with his disease. I don't know if you have this in the UK but here in the US there is a group called Al-anon which is for family and friends of alcoholics. They help you deal with your guilt, shame, etc. It has been a huge help to many people I know.

Also, I would like to say the lupus "wins" when we let it rule our lives, not when it makes us take measures to live with it. As a lupie for 41 years I can tell you it takes a while to figure out what one can and cannot do, and you have to learn your limits. Yes, you will have terrible days, you will over do it, you may end up having all kinds of issues you never thought of. But you will also have good days, you will still have wonderful moments in your life, meet great people, in short you will live your life and by the way lupus will be part of your life, not your whole life.

[midlifecrisis1]

I feel for you both.It's a terrible illness and so unpredictable.You can have many bad days when you wake up feeling as if you've had no sleep whatsoever and others when you're fine.I still feel frustrated over this but the one thing I have learned is that on those bad days give in to the disease and try to get as much rest as possible as fighting it makes you feel worse.I realise that's impossible in your partners situation as he's working full time but he might have to reconsider this.His health is more important and there is help out there.With support he will feel better in himself and hopefully be able to reduce his drinking and smoking.He has a wonderful,supportive partner in you and that is a wonderful start.I sincerely hope things get better for you both and hope you can see some light at the end of the tunnel.You deserve it.X

[lupusbutterfly]

Thank you very much all for your support. I just wish I could do more for my partner because he is such a wonderful person and I feel helpless.

I wish you all the best.

Lin

[Smiler1]

So sorry to hear of the trials you're going through.. I empathise as have had a few partners with addictions...some alcoholics, very hard situation but 1 thing is, look after YOU!! 'cause if you don't, you can't help folk the same.

Your fella no doubt is struggling with stress; because he's not looking after his own health (the healthier our bodies are, the easier we can cope with 'stresses'). SOoooo hard to see someone you love destroying their life & knock on effect onto others around.

I've got Lupus & have recently been told by my partner, that he has an addiction :'(. Whilst I'm trying to help him, I've now learnt that I have to look after me 1st, then I'll be of better 'use' to him.

Hope things pan out ok for you, keep staying strong & positive & listen to your gut instincts. Big hugs, love & peace to you ALL :0)