Looking for advice/Help?

saw my rumotologist on Wednesday just gone, looking like I do have lupus but wants to do scans an bloods to make it 100% certain.. I'm not fussed about having the lupus as its a huge relief as been waiting to be diagnosed since October 2015, but just makes me feel bad for my boyfriend having to now take on this illness with me an watch me struggle in pain, an maybe me not being able to give him everything he wants in life.. E.g kids.... As I also have an underactive thyroid.. Also may have diabeties an arthritis!! So quite a lot he has to listen to me moan about..

He always tells me not to worry about what I can an can't give him but we're both so young! Me (21) him (25) but I do want a child an would like to start a family when I turn 24/25 but then what about if that's too late? His no where near ready for a child in the next year so I'm not the sort of person to talk someone into something that drastic which wouldn't be right anyway with the money/health situation where in at the mo.

I have gone back to work doing 4 hours a day (20 hours a week) from doing 44 hours a week... I though 4 hours would be fine, but it's literally killing me I'm struggling just to do normal work stretching over to answer the phone, walking around and lifting piles of paper work..

I don't physically want to give up work as what else have I got to live for.. I'm wondering once I am fully diagnosed is there any Benifits I can actually claim to help me out more as extremely struggling with money because of the illness an killing my body off for working even though it's only 4 hours..

Any advice would be great on Benifits an the boyfriend situation..

Thank you! X

4 Replies

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  • Look for a blog called Despite Lupus by Sara Gorman despitelupus.blogspot.it/

    She was diagnosed with lupus 6 weeks after getting married, runs a business from home, writes books and her blog about living with lupus - and has had 2 little girls in the meantime.

  • Hi Leanne21bull,

    You may be entitled to claim Personal Independence Payments (PIP). c-App is a website where you can check yourself against the eligibility criteria and see what level you might be awarded for each component - c-app.org.uk/

    With regards to work, have you had an occupational health assessment? Have they made any adjustments to help make things easier for you? Some of the physical tasks that you mention you are having difficulty with could potentially be made easier for you. For more information about workplace adjustments, have a look at our employment guides which you can view or download at lupusuk.org.uk/working-with...

    We have a booklet called 'Caring for Someone with Lupus' that you and your boyfriend may want to take a look at - lupusuk.org.uk/wp-content/u...

    Also, if you want more information about lupus and pregnancy in preparation for the future, we have a booklet at lupusuk.org.uk/wp-content/u...

  • Hi Paul,

    Do you have any info like that for the US?? I still have not even been able to start the Plaquinel* yet set dx past Tues..Ive been searching but the processes are so long and Im so ill ..its like I have no idea what to do??

    I cant even focus on what to do??

    Im scared because I want to have some kind of life?? Its been so long being plain sick.

  • Hi lonelyone,

    I'm really sorry, but as a UK charity the information I have is almost all for people living here. Have you tried contacting the Lupus Foundation of America to see if they are able to help? lupus.org/

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