Venting about my latest flare

[lingdings]

I don't have a question or useful info to share. Just wanted to get this rant off my chest!

I've had 3 major flares of lupus since I was diagnosed 7-8 years ago. The first brought about my initial diagnosis. The second was 4 years later in 2020 when I stopped my medication for a few weeks because I thought I had Covid and that was the advice at the time. Both times I can understand I had a flare because I wasn't on treatment.

This time, however, I've been doing all the right things - taking my meds, wearing sunscreen, eating okay-ish - but I've still managed to flare up again and I'm now leaking huge amounts of protein in the urine even though I don't have any other of my usual symptoms so far except an increase in hair loss.

I guess I'm just disheartened that I've still had a flare despite my best efforts and with no obvious trigger. Since I have health anxiety too related to the lupus, it's really hard to cope with the uncertainty and unpredictability. Plus I hate being on steroids as they bring about a whole host of their own problems. I thought if I was taking my meds and doing my due diligence I could ward off flares, but it appears that that's not the case after all

[Lupeyfrou22]

Totally valid feelings. Hair loss affected me a lot last year. I looked up a specific shampoo and conditioner to help from other Lupus patients advice on Reddit and it got better. Unsure if meds or combination. Whilst I’ve had Lupus for only nearly two years mental health is detrimental at times. Have you heard of the Wren project talking therapy? Additionally I went to mental health nurse when talking to friends and family didn’t help (despite best will). I also joined a local Lupus group meet up. Hope your flare eases and you get some answers soon.

[lingdings in reply to Lupeyfrou22]

I hadn't heard of The Wren Project before but it sounds like exactly the kind of thing that's sorely needed for lupus and autoimmune patients. I have had CBT through the NHS before but it didn't help because it was so general. I wish there was better specialised mental health support!

[Love2fish2 in reply to lingdings]

I hear you!! The thing about Lupus is that it’s unpredictable. Despite the best laid plans a flare will pop up. If we knew everything that caused our flares they would be closer to a cure. It can be do disheartening 😔 Just think of all the good days in between flares and accept my 🤗

[Hoofprints in reply to Lupeyfrou22]

Can I ask which shampoo and conditioner you found helpful for hair loss?

[MusicalFurbaby]

Hi Lingdings, you poor thing! It’s sooo disheartening to do all the right things and feel like the rug’s been pulled out from under your feet anyway. I totally relate to the health anxiety—it’s like flying in a plane that can fall out of the sky at any second. And it’s not because we’ve got overactive imaginations; it’s because our planes have histories of falling out of skies!

I’m familiar with CBT and I agree, it doesn’t do much for these specific worries. I think it’s because CBT assumes your worries are irrational, but our health-related worries are completely rational and based in reality. Like our illnesses, our worries can become chronic too, and then they’re especially hard to shake.

Finding an understanding therapist can be helpful, but honestly, the thing that’s helped me most is venting on this space (and to friends with similar autoimmune conditions. They get it). Being completely honest on this forum, asking ‘dumb’ questions and giving voice to my worst fears is somehow healing for me. So I encourage you to post here as often as you need.

Cut yourself some slack (not easy to do, but 100% necessary). Your body has a mind of it’s own, it’s not your fault. Try to roll with it as much as possible. Allow yourself to rest, be kind to yourself, and do all the self-care things until you start to feel more like yourself. And in the meantime, we’re here for you. 🌻🌈