At my wits end :(: I've suffered with lupus for 1... - LUPUS UK


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At my wits end :(


I've suffered with lupus for 10 years, although I've just been diagnosed a few months ago. For years people made me think I was imagining my symptoms, or I was lazy, or overweight, or just plain moaning. Now, I know what's wrong with me, I know why I'm so tired all the time, why my muscles ache, and my wrists are so sore even typing this blog.

I know that every sufferer probably feels like I do, and I'm honestly not looking for sympathy, I just need someone to know what I'm going through, who understands me, and who can tell me things will be ok. I am only 32 years old, and have a 20 month old daughter. I work full time. I'm struggling to look after myself and my little girl, and I feel like a burden to my partner. I can feel myself becoming more weathered and sad as time goes on........

8 Replies

Hi ..Lupus is a twisted illness,you can look fine but inside its causing pain,it causes the tiredness and plays tricks with your mind...anyone with lupus can understand what you are going through..its getting people who haven't got it to understand it..If your employer has an HR dept perhaps it would be benefical to discuss your workplace needs with them or look at reducing hours if poss...I know it sounds silly but have you told your partner and family how you feel ?sometimes it's little steps to that help to raise the spirits..(.I find an hour in my bath with a coffee and radio on helps but thats just me...).I have DLE lupus plus the fatigue,stomach flushes,Raynaurds...I didnt know what was wrong with me and like you thought I was imagining it a strange way ,once I was diagnosed and realised I wasnt going mad it made me stronger because there is no way that I will let lupus beat me,no matter how many times I crash and burn,I know that I come out the other side...this my stubborn streak and my coping mechanism.I do hope that your sadness ebbs and know that you are not alone...take care..Redfive

Hi spoonie, sorry its been so bad for you but you have a foundation to begin building on now as you have a diagnosis :-) and that's good news. I will not pretend that things will change overnight but the nhs, bless them, always feel better when they know what they are treating as they have a treatment plan for lupus. We also have the hope of a new drug lupozor currently being tested which is promising a major break through. There is so much more information available now and this site is great for asking questions, having a moan and being able to reach out and find a like minded friend and all of that will help and give you strength :-)

Oh and by the way, don't underestimate or dismiss your need for sympathy we all need it so get it where you can :-) your body is in turmoil yet people tell you your looking great if that is not a mindf**k in itself then nothing is lol

Hopefully now you know what you have they will start treating you for it, it may take some time as you work out which meds help the best but you will eventually reach a plateau and cope with things better xx stay strong and moan all you want :-)

brave in reply to twist1

Twist ....hi ;) love the mind f..K term .I am learning to step away from the mind f..kers in my life ,their not worth my tiny pocket of energy ,happy days ;))))

twist1 in reply to brave

I completely agree brave :-)

Hi ,im with you here ,i was diagnosed last june after 18yrs of ill health ,it needs to get to certain level to be diagnosed,i feel your frustration from others not beleiving you when it comes to your illness,i was always labeled a raving hypochondriac it hurt my feelings so bad that i feel i want to gather all those people in a room and scream HERE THIS IS REAL and it sucks ,wanna borrow lupus for a day??i dont think they would ?one thing im learning is who actually is important in life ,even family members who dont really understand,ive been crying out for help for so many years and even doubted my own sanity at times ,but ive always known my body ,and got there in the end , however as you know its been a tormented journey of trying to be normal when i was so unwell ,i wish i was honest with myself sooner ,im learnig slowly but like you with a child and partner am struggling very much ,and now utter exhaustion has taken its toll and is playing games with my symptoms ,its one thing after another and im scared ;( my advice is small but i think you need to concentrate on yourself as much as possible ,dont let the energy drainers pull your cord ,live for today ,tomorrow will always be there ,i wish you well ,brave;)

hi spoonie

really sad to know you suffering so badly,,,

if you serious about finding a solution, [email removed by HU admin]

,trust me ,,you have nothing to lose



Hi spoonie, so sorry you are struggling at the moment...I know Lupus is hard to deal with and sometimes you feel like nobody understands, try and talk to your partner he might surprise you and might really appreciate you telling him how you are really feeling. I was diagnosed with lupus three years ago and it was tough on us too. I was working full time with a one year old and I had to go part time as I couldn't physically handle full time work. Now I have another little one and I must say we get our tough days but working part time absolutely helps me manage the kids, the lupus and family life. Maybe talk to your employer about adjusting your working pattern, I hope work knows about your lupus as it helps to have a employer that understands what you are going through. I hope things look up for you soon.

Sorry to hear you're feeling sad and alone. I know exactly how you feel. My advice , for what its worth, would be that you firstly talk to your partner. hes probs feeling a little useless and unable to help - knowing how you feel might really help you both. Also try talking to your boss or HR. Take some leaflets or (like me) point them in the direction of a website. I ended up being off work for 9 months as I was in and out of hospital on steroid drips etc. lupus is exhausting at the best of times - when you have young children, it can be a real struggle. If you are finding it difficult, talk to your rheumatologist, my hospital OT approached social services and i now get some help at home - meaning what little energy I do have I can give to my children. There is help out there. Ask your consultant or your GP. If you're not very good at being forceful or don't like asking, take a pushy family member or friend with you :-) . I had to take my husband to the GP several times . Hope that helps in some small way and remember there are always people to talk to on here x

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