Fed Up

[Sue2803]

Hi there, not having a good day today, been off work for a week now, steroids have kicked in and helped a bit with the pain but feeling very depressed. My partner is about as much use as a chocolate tea pot, we do not live together all the time, but do for about 4 nights a week and then we stay in our own places, which is great and we both like it like that, but he has been as mine since last Friday and to be honest if I had been on my own, I would have had less to do. Really dont think he understand about Lupus or the pain and fatigue. Dont think I am gonna be able to carry on working for much longer, starting to dawn on me now, dont know how I will manage on benefits though. Dont even know how to go about it, always worked.

Sorry just felt I needed to offload.

Sue x

[Welshexile]

Hang on in there Sue, I think many of us have gone/are going thru similar experiences. I always direct friends, relatives and partners to lupus website and encourage them to ask me questions about my condition to help them understand - the one thing I have learned over the last 20 yrs is only YOU can look after yourself - if your partner is creating extra stress (physical or mental) you need to let them know asap - easier said than done I know! Sending you good wishes.

Welshexile

[Trace]

Hi Sue, so sorry that your struggling today & Im even more sorry that your partner isnt helping very much, all I would say is, partners, family & friends struggle to cope with it cos they dont understand what its like. I know youve just read that & thought, who is this person writing this crap to me! Welshexile is right, only you can look after yourself, harsh words i know but its true. Meanwhile, although we're not physically there for you, this website is & to some degree we all know what your going through, so anytime you need to off load, do it on here, Hang in there sweetie x

[Sue2803]

Thank u so much guys, I am bawling my eyes out now. x

[StayPositive]

Don't cry Sue. Everyone has there down days, it's what you do about it and how you handle it that counts.

A great book that I got my sister to read is called the secret by Rhonda Bryne, its all about staying positive. I know it must be so unbelievably hard to think positive but the alternative only ends up in deep depression!

If you are feeling really low talk to your doctor and make them help you.

Lastly always remember that people do care, your never on your own xx

[NatashaW]

I'm so sorry you're finding things so hard to deal with. When I was first diagnosed with Lupus and started looking into it I thought my life was over! It doesn't have to be that way if we don't want it to be. It is very hard sometimes to deal with everyday "normal" things but there's always tomorrow! Your partner probably doesn't understand how you feel or what you're going through. My family are still learning four years after diagnosis! Try and get some info for him to read or even direct him to this website, he will be able to see exactly what we do go through. I'm sure when he knows more he might be a bit more understanding. Keep your chin up darlin. Hope you feel better soon. xx

[Gelli]

Great to see this website last night. I was diagnosed with SLE September 2007. Been on plaquenil, hydroxychlor and methylprednisone since January 2008.

It kept me going with a very busy business. When pain was getting worse due to meds having less effect (developing immunity), I found a way to help out- Xango juice drink. Been drinking it since June 2011 and my RX dosages haven't been increased. That's my goal- for my MD to not increase dosage.

Lately though, I've been so easily irritable, I can't control. I've read threads about depression but I haven't been to any psych evaluation visit.

I'm beginning to feel like a "robot", not much sense- emotionally, physically. My hair is thinning fast, too. I got accustomed to wearing wigs now.

But through it all, I'm decisive to keep my business going.

Really glad to be here.