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Discussion Starter · #1 ·
Hi there

Im new to this site although i have been on a similar site for the last few years regarding dizziness i suffer.

After 5 years of feeling 'ill' and feeling like i was a hypocondriac i have been diagnosed with lupus. Im struggling to work be it only part time and im so fed up with peoples attitudes towards me.

People at work now know i have lupus but still seem to think it is no big deal and that i can carry on as normal, im in shock as i truely believed with all the symtoms i have they were just all in my mind. People just dont understand and dont seem to care.

A lady in our office has broken her ankle and people are falling over themselves to be helpful, kind and supportive.

Sorry to rant on my first post im just ssooooooo fed up being me!!

Jane
x
 

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Hello and welcome to the site. Of course... also very sorry for what brings you here. But you've come to a place where people will understand what you're going through. It's tough having a disease where it can be "invisible" in that people can't see or really even fathom what you are going through. I have told a few people in my life that lupus is pretty much like living with a chronic case of the flu (& they seem to understand more if you do this right after they have recovered from the flu themselves!).

When I was first diagnosed, I struggled between wanting people's sympathy and help and not wanting to be any different at all! It was a hard line for people closest to me to walk... eventually it all got sorted out and overall people don't treat me much differently but will understand that I can't always do the things I used to...

Have you started treatment yet? How does lupus affect you? There is a good chance that you will get better within the next 3-6 months, or even sooner depending on what medication(s) you've been put on. Good luck and take care.
 

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Hello Jane and welcome :)

I'm sorry to hear that you have been having so much trouble and about people's attitudes. I think we have all experienced that in one way or another, some even with close family.

I remember when I was finally diagnosed after 9 years I had exactly the same problem and it was so at odds with me knowing that this thing was relatively serious and to an extent life changing. It was only when I suddenly downed tools as I just couldn't go on that people realised how ill I was. Even now I'm not really sure they get it at all but I don't really care. I was lucky to be able to shift my work to home and now just get the odd kind e-mail from the ones that actually notice I'm not there.

hugs to you :hug:
Katharine
 

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Hi Jane and :welcome:

I'm not diagnosed yet but certainly know how you feel in respect to people not understanding!

I feel so terrible but I'm sure people just look and think there's nothing wrong. They simply don't understand until they go through the same thing.

Hope you're not too bad at the moment.:)

This place is a great one to come for support and info as well as having a good old moan.:hehe:

sending you a :hug:

Mrs M
 

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I know what you mean. I think it is because we look so beautiful :excited:

really, meaning that we don't look sick...... so it is hard for people to understand what we really are going through.

Everyone is undereducated about Lupus. Yes, there is some awareness going on.....but not enough.

I just go about my business now and at work I always cover things up. Even when I have the flu, you wouldn't know it. It is nice to feel normal or close to it without many knowing the suffereing I have going on inside.

But on the other hand, because we don't look sick, it is hard for people to understand when I am not well or flaring. Some things are visible on me which is a dead give away. When I don't feel well, my eyes change and become very withdrawn and blood shot. My face becomes red from fever, my skin sometimes mottled looking. My hubby knows right away by looking at me.....while others may not.

Try to stay strong and not care about what others think or know. You know when you are ill and what you can and cannot do.

Right now I think I have a family member mad at me for not attending a birthday party. I was not feeling well and have come to a point in my life, when I don't feel well, I don't attend. No guiltiness either. If others cannot understand, then so be it.
 

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Discussion Starter · #6 ·
thank you

Hello all,
Thank you for your replies to my post, my boss spoke to me today and said he thinks the best thing is i just carry on coming to work and carry on as normal. That is easier said than done as i use a pc all day and the pains in my hands, wrists, shoulders make it very hard work. The pain makes me want to cry......i am sooooo tired to.

Im sorry others suffer the way i do but it is warming to know im not alone. It is also nice to hear about how lupus affects others, reading that your eyes go bloodshot makes me feel better that mine do too. I guess it must be linked.

Im going to have a chat with my doctor (GP) as the specialist i saw didn't seem to want or have time for my questions. I have not yet started the tablets i was given by him as he said my blood pressure was very high and the tablets can be known to raise it. So i will chat to my docotor about that too as im struggling to carry on at the moment.

Jane
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Hello Jane

I am wondering what tablets he prescribed and when do you see the specialist next and also if urine was tested. I hope the GP can help find something to reduce your pain maybe some topical therapies could help or splints and warmth. You might get some suggestions for relief by posting about it on the Symptoms section.

Bye for now
Clare
 

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Hi

Dear Jane

Just to say hello and welcome to the site. I hope you can get some good support from your GP and get started on treatment soon. I too was diagnosed in early August and am still waiting for my drugs to 'kick in'. I am noticing that I can get out of bed in the morning now rather than surfacing in the afternoon! Hopefully you will be feeling better soon. My advice though it just take every day as it comes. What drugs have you been started on? I was started on steroids and hydrochloroquine.

Kind regards

Lupo30
 

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Discussion Starter · #9 ·
Hi

Hi

I have been given hydrocholroquine, diclofenac and omeprazole. Not sure what is for what but i was told one of them is to offset the problems another may cause with my stomach.

My GP was very caring last night although as the specialist and him said i can't take the tablets yet as my blood pressure is too high. Next week i am having a 24hr blood pressure montior fitted and depending on the readings they will try to get my blood pressure down with tablets and i can start my lupus meds.

I am due to go back to the specialist in 3 months time. I had my urine tested or rather i left one to be tested and had further blood tests before i left the specialist. The results of all these were not through to my GP yesterday.

Previously i had a urine test, quite some months ago which had blood in it apparently, don't know if this has anything to do with lupus?? At that stage (few months ago) i was treated for a urine infection with anitibiotics.
 

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Dear Cattibby(are you a cat lover?),
Just wanted to welcome you. I don't know if where you work has an Occupational Health Dept. If so you should seek their advice. Being told to just carry on as normal is very simplistic. If you feel you need wrist splints, I bought mine from Medistox. Try googling them. I found they give much more support than the basic NHS ones.
If you ring them they may well send you pictures of their range, that is what they did for me to choose.

I am also wondering if you work under UV lighting as this may well aggravate your symptoms.
x Lola
 
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