Hi my wife is currently going through medical testing for sle and has been for the last 2 years but seems to be getting no help

Hi Tracey - no problem. It is always good to share information!!

Thanks for the help .. I am alone most of the time and I feel so much better being able to help someone else.

Hey jean.. How long u had lupus? Do u have problems concentrating. Like with lettering mistakes ?

Like you Tracey I have been ill for about 7 years (maybe longer) and it has taken until about 5 months ago to be fully diagnosed. I cannot tell you how frustrating it is to have poor memory and not be able to spell things correctly when I am typing. I always prided myself on my English Language so spend a whole lot of time correcting myself!!!!! I am rubbish at quizzes!!! I try to laugh about it but sometimes it makes me look a bit dumb! It is worse when I am really tired - which is most of the time! How do you manage it?

G'day jean, well back in the day I was an business assessor. So like u am so frustrated when I look back at all my letters on the site , and see so many mistakes. Yes it does get worse when I am tired. Well the exhaustion is a big part of lupus , along with all the aches ashes and pains.. Well I can't work anymore , as I have more bad days than good.. The only thing to do really is rest. It is such a hard thing to tell others when they need help , but it is the truth I'm afraid... My partner works away from home so he is never here. My boys are really great kids .. They have grown up with me like this , so they have learn quick. They help me a lot just with the little things , like pegging out the washing , packing away the dishes.. They c that something needs doing and they do it by themselves now.. So in managing my lupus is really resting a lot. I do need to get my meds changed , but it is a 3 hr drive to my rumy.. Very frustrating. But u know that since I joined this site , and am trying to help others , I have felt better about myself. Just being able to talk to somebody , anybody , I feel better. My boys have even noticed a change in my mindset since I have been typing...god bless from outback Australia.

Hi I was diagnosed with lupus nearly 4 years ago, lucky for me it came on quickly,practically overnight, diagnosed within a week, but it has taken about a year to feel any thing like my old self, I now have learned to rest rest and oh yea rest lol if I want to lead a near normal life, can't walk or stand for a Long length of time as knees hurt, I'm on azathioprine 100mls aday which seem to suit, my main problem is the sun, any one got tips, I use sun cream etc but even sat in the car effects me,

Hey from down under Australia.. G'day... Well I have had lupus for 7 years now. Severe exhaustion and joint pain is a true symptom of lupus. Oh with us LUPIES the sun plays a big factor with our health. We are sensitive to sunlight and ultra violet light as well . U will find it better to sit in the dark... When driving u need the best sun cream high uv blockage... A lupie quote... """ PEOPLE WITH LUPUS ARE LIKE BATS...WE ONLY COME OUT AT NIGHT , AS THE SUN MAKES US SICK""".... Also make sure u wear sunglasses as the sun will effect your eyes.. Let me know how u are going... God bless.

Hi Tracey I think you feel very lonely with this illness and also being so far away from the services you need. and a think a little of you feels guilty that you are relying on your children so much, but I am sure that they love you very much and are happy to help!! I am very lucky in that my boys are grown up - the youngest one lives at home but he is 22 years old - can cook, wash, ,iron etc.,....although a little untidy at times!!! He has grown over the last 7/10 years with the knowledge that I am always tired/feeling ill/aching/grumpy and a whole raft

of other things, but he accepts that this is the way it is!!! Don't beat yourself up!!! You should pat yourself on the back, lots of women don't manage their family etc whilst their husband/partner is away and you are doing it on your own with this very difficult illness. Take heart that when your children are adults

they will thank you because they will be able to look after themselves very well.

Keep your chin up - you must find the time to go and see your Rheumy as he is the key to your feeling better than you are doing currently. Make time for you!!!!

Try to keep positive!!!

Speak soon XX