Hello everyone,

I know everyone has there own troubles on this board and mine im sure are insignifigant compared to them. However i am finding it VERY difficult to cope. I try to be positive and distract myself and it helps stave off all the emotions im going through but its temporary. Deep down inside i wonder if i really can get through this time. and i suppose im posting here late at night uk time cause i suppose i need to put these feelings somewhere. i don't expect a response just somewhere to let this out.

If i don't let it out i think it will eat me up inside and i don't want that to happen. sometimes the way i have been treated time and time again makes me feel less than human and i can' tshift these memories. I saw a doctor at the local hospital a few weeks back and i was explaining that i was having difficulty at night breathing he said to me well you know all those people you see puffing to get to the bus they are always depressed. i told him i was depressed as a result of being ill only. and he sadi most condesendingly to me oh im so sorry to have upset you. It was the most ungenuine sarcastic thing i heard. Why is it whenever people bget into a position of being weak and ill and vunerable the less people seem to hear them. im talking generally here.

I have to say here as well that while my friends have been fantastic and 100 percent behind me . My family are have trouble coming to terms with this. they know im very ill but can't understand why i have not been diagnosed yet. My mum has had mental health problems so shes not really in a fit state to look after me and My Dad well we had years of trauma with my Mum finds it hard to cope and understand. I was alway there for my family 100 percent strong, i went to uni got a great job etc and then this happened. But no one at home could deal with it. M yBrother is also a drug user and this makes him completely off the rails too. i never told anyone this but he beat me up when i was sick in about May. also when i had my severe drug reaction my mum read a book in the ambulance on the way to the hospital. It looked soo bad.
My Dad too has held me in his arms when i had sudden heart pain and unable to breathe properly, but i really needed him to get medical help at the time.
i don't feel that safe living with my family after all these events, its like they have given up on life not me, I feel sometimes im doing all i can to save myself from getting sicker. My friends are wonderful and i surely would not get through all this without them . they have prooved best to take with me to the hospitals doctors they really press things and stuff gets done. i find it hard to get rid of all these memories and im sure its not helping my health.

My appointment at the specialist lupsu clinic will be in about 3 months. It was quite hard to get a referral as Lupus seeems to baffle all Doctors who don't know much about it. I feel happy about this but also annoyed to have to wait. i know people have to wait for years with this illness. but its so agressive with me. i literally look worse more and more each day. my skin is thickening and disfiguring.

I was in contact lately with a woman who got lupus and lots of other health problems due to minocycline use like me. She had been battling with it for ten years and it still seems to linger in her systmn apparantly it can even get into the bones. However i have asked her advice on the specialists she saw which should be very valuable to me. whether its lupus or a wierd drug related illness im going to try and get through it. thank you for giving me the space to let this out..

Zoe x

Dear zorm,

All I can say by way of advice is that if you spend "x" minutes or hours a day reading and thinking about lupus & related illnesses, maybe you can spend "y" minutes & hours REFUSING to think on it. I am capable of obsessing myself right down into the pavement, if left to my own devices, but I've gotten better with age (almost 53 now). So believe me, I totally understand how the mind races, even when you don't want it to. It's a lot of info & a lot of worry, and your mind races to process it all.

I really feel for you when you talk about how feeling so punk changes your family relationships. They really can't understand, not yet, anyway. Time does have its own odd way of rebalancing families, though... The one thing you do want to *make* happen now, though: not letting your brother abuse you in any way, not physically, not verbally. Troubled or not, he has NO right, EVER.

Please know you have my total sympathy on all this. With hugs for you, Vee P.S. You should vent as much as you want---that's why we are here & why we stick together, zorm. Please hang in there, OK?!

Hey Vee,

Thanks for listening to me. i have developed strategies to stop worrying about everything going on. i spend my time doing my research and talking to people going through similar things. But i have learnt that too much of this doesn't actually slow this illness down. I think i have leant this in the last month or so. And no matter how bad i feel you have just got to take the time to completely distract yourself in whatever form it takes. I do a lot of reading when i can i ve developed an interest in rwanda and Africa. Im eductaing myself about it. and hearing what the people went through there puts my own troubles into perspective. I also love movies i just ordered raising Arizona off the net so il be getting some snacks and enjoying that tonight. I think im too hard on myself. I should not punish myself on top of whats happening. Nights like last night however i just had to put all my feelings down.

Thanks zoe x

Hi Zoe,

(((((((((hugs)))))))))! So sorry you're in such a situation. Is it possible to share a flat with a few friends? If you're unable to work, you could perhaps cook and keep the flat up. That would get you away from your family home and their difficulties.

If you're still out in the sunshine a lot snd if you have lupus, you'll feel tons better if you avoid sunshine, especially during the midday hours. For some reason, the sunshine makes lupus symptoms very much worse. It's okay to be outside when your shadow is longer than you are tall.

Reading does help, but also read some books that are about happy things.

Wishing you well - Barbara

i think i l watch nike cage monies i find him so dopey seeming and adorably funny thanks barbara x