Followoing a tel consultation yesterday it is now almost certain I do have lupus after a few months of tests etc. I feel no sense of relief at finding out what has been going on all this time. I am also struggling to tell anyone even my husband - who knows I have been having tests. I can't imagine telling my teenage children either. I just dont want to talk about it to anyone close. My boss knows I have been having tests but I haven't told them yet. I just feel like I am goingto break down if I don't speak to anyone soon.
I fear being on medication all my life as I don't like to even take paracetemol.
I don't want to be in work as it feels so hard - but want some normality and don't want to leave my colleagues in a rut. Anyone else feel the same any advice?
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Sarahze
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I’m sorry to hear your feeling like this but it’s understandable once you get a diagnosis.
Maybe at some point speak to your husband, as the medication could take a while to adjust to so you may need his support. When you are both ready speak with your children about it.
My children are younger not teens but know I’m poorly at times and need to take it easy. So we all adapt to what we can and can’t achieve at that point in time.
With work mine had to make H&S adjustments I got a fantastic chair and my office space was moved different technology but it all enabled me to to do my job better and management and colleagues were supportive.
Friends and family know I have Lupus but also know I don’t really talk about it and just get on with things. But that’s just me and they know I will shout if need support.
I find this a safe space to ask questions or vent as others get it here and can get access to great information and support.
Don’t be too hard on yourself you have to get your own thought process around the diagnoses and potentially life long medications you will be taking.
The way I think of medication is that if it helps me stay well or I can regain a better quality of life it’s worth a go. If it doesn’t agree with me I need to seek medical advice and in the meantime I’m here asking fellow warriors for advice.
But I’m sure people will here also share and reach out to you.
Hi Sarahze welcome to the forum. I'm sorry to hear how you are feeling. I was diagnosed in August after many years of suffering. It came as a big shock to me and due to covid I was told the news over the phone. I wasn't given much advice on my condition or what to expect but this forum has been so helpful. In fact in valuable to me. Lovely people. So caring. It has been hard for my family as they dont fully understand lupus and what to expect. I'm still trying to come to terms with what is happening to me. You are not alone. Big hugs to you 🤗🤗🤗
I felt a sense of relief as it confirmed what i knew all along that I wasnt going crazy.im also not afraid or ashamed to talk to anyone about it...its nothing to be ashamed of and the more information people get the more understanding we might get.you are going to need alot of support from family and friends during bad spells which could become difficult if they dont understand or you say there is nothing wrong.As for meds they help preserve your life.lupus meds are about protecting your organs for the future and why suffer if you dont have too why have a lower quality of life because of pain or swelling when you dont have too ? Letting your lupus run riot could result in damage to your lungs,heart ,kidneys and brain as they all have connective tissue.my lupus got out of control before I was diagnosed it inflamed my heart and put me into heart failure for a year...I also have breathing issues and lupus in my kidneys so I'm not scaremongering Ive experienced it and it made for 2 very sick and difficult years trying to get everything stabilised.
If its any consolation I take about 25 tablets a day .
I would suggest you talk to your gp about depression and take help if its offered as it's a big factor in living with chronic illness .
My youngest is now 17 and has seen me very poorly and has become a young carer for me.i think its taught him some valuable lessons .I know it's all scary but if you relax and approach with an open mind it will be easier to deal with.good luck .
Remember weve been there xx
Hi
I was the same never took paracetomal and now on meds everyday. Im newly diagnosed as well been 4 weeks since i got diagnosed and struggling to come to terms with it. Scared on the unkown and what might happen.
Its tough but its new maybe over time we can accept it.
I was diagnosed with lupus six months ago and prescribed hydroxychlorine or whatever it is but have not taken the meds as I was also on HRT (being told my pain was menopause) and also anti-anxiety meds (being told my pain was psychosomatic) and also on thyroxine as I have an under active thyroid. I did not want to add to the concoction as I also hate taking meds. So I have taken my self off the HRT and feel so much better - it had not helped me at all and I have taken myself off the anti anxiety med which had only caused me to put on weight - how depressing! Have been running twice a week, eating well high protein diet, taking vitamins and doing yoga and have felt tons better. But recently the sun has been out and as a sun lover I have lain in it. I have lived overseas for years and it has always made me feel amazing. But now the joint pain is back so badly and I cannot sleep at all and feel so fatigued during the day. I feel too tired to join my run group this evening. I am taking a sleeping tablet plus paracetamol and ibuprofen most nights. So - my question is - do I take the horrible anti-malarial stuff....? Does it have neurological side effects? I am kind of in denial that I have this but right now I feel close to tears because the pain is back and constant and I just want to sleep..
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