New member

[Minamoo1]

Hi I’m new here I’ve had SLE for a few years now it has been inactive for the last two years then back in March I went into the worst flare I’ve had yet. I’ve been feeling very low with all this COVID and I’m terrified of catching it so I’m basically staying indoors all the time. Thought I’d join here to have some company as I guess most of you are feeling the same at the moment.

[BonnyB]

Hello you. Worrying times for all isn't it. Can I ask if you are on medication? Just wondering why inactive, then a big flare after all that time.

Sorry, but I'm new to all this too, it's so confusing x

[Spanielmadlady in reply to BonnyB]

Anything can cause a flare especially stress .could be that meds need adjusting or if tapering could be low enough to allow the disease to become active again.lupus doesnt stay inactive it's a lifetime of remission and activity I'm afraid . Xx

[BonnyB in reply to Spanielmadlady]

It's so frustrating 🥺😂

[Spanielmadlady in reply to BonnyB]

It certainly is but as time goes by you learn to manage things better to reduce flares......reducing stress and sun exposure learning your boundries etc xx

[BonnyB in reply to Spanielmadlady]

Thank you X

[Spanielmadlady in reply to BonnyB]

Lots of tips here from experienced sufferers x

[Minamoo1 in reply to BonnyB]

Hi BonnieB I was working quite hard at the time and under a lot of stress which is what I think caused the flare. I’ve been on hydroxychlorquine for many years but since this flare I’m now also on pregabalin and methotrexate injections. I’m starting to feel a bit better but it’s just taking time. I hope all is well with you x

[BonnyB in reply to Minamoo1]

Ok,its so annoying ! I suppose I have to get my head around you can't just take a tablet a day and that it sorted. Sorry I didn't mean to be nosey, just trying to learn from people's experiences 😘

[Minamoo1 in reply to BonnyB]

I don’t mind sharing 😊 it’s nice to be able to chat with people that understand my family are great but I don’t think they get how poorly I feel some days x

[BonnyB in reply to Minamoo1]

Yes, some tough times have been had by many on here but I'm so pleased I've found this lot. X

[Spanielmadlady in reply to Minamoo1]

Get them to google the spoon theory xx

[Spanielmadlady in reply to BonnyB]

Oh how i wish all i needed was 1 tablet a day......i currently take 30 a day but that's going up to 33 as my steroids are being increased 😪 xx

[BonnyB in reply to Spanielmadlady]

Oh no flower, it must be so hard and you're always there for everyone else on here too, helping us. I've been very naive and have lots to learn X

[Spanielmadlady in reply to BonnyB]

For me the art of dealing with it is just to get on with it ...I've had 7 years of it gone Christmas day . I can take upwards of 40 if my steroids are high .I have some lung and heart involvement so some meds are for those and I also take prophylactic antibiotics 3 times a week all year.when I fall over ( which has been known) I dont bounce anymore I just rattle 🙄🤭 xx

[BonnyB in reply to Spanielmadlady]

Haha yes I bet! Take care you X

[Spanielmadlady in reply to BonnyB]

And you stay safe and warm xx

[Spanielmadlady]

Welcome to the forum.friendly caring folks here who are more than willing to support and share knowledge.im sorry to hear you have had a flare.whilst I know this is all much more scary now try to keep those stress levels in check .I'm cev so I'm staying at home too but I live rural so i do go out once a day with the dogs down onto the beach.We share all sorts of things on here to help keep our spirits up....crafts,achievements,pets,nature,cooking...even funny stories so do join in wed love to hear after all there is more to life then lupus.sending hugs your way...stay safe keep warm xxx

[Minamoo1 in reply to Spanielmadlady]

Hi thank you for your kind words 😊 I do lots of craft things to keep occupied I love crochet and cross stitch keeps me busy x

[Pickzie]

Hi Minamoo1. Sorry to hear of your recent flare; I hope it has settled down and you are feeling better now. Covid is a worrying concern and most of us will be feeling somewhat anxious about staying safe and well. Sounds like you’re rightly being very careful about minimising contacts outside but I know that staying home is hard emotionally and mentally. I’ve found mindfulness and daily yoga very helpful in keeping me grounded and I do go out for a walk once a day at times and places when it’s quieter. Building this daily routine has been really helpful for me although I did have to work at it for a while - but it gave me something else to focus on and was worth it. I tapped into a lot of free on line resources to get going. You might find establishing something similar helpful but it’s not for everyone. Either way there will be plenty of people here to give support and encouragement. Roll on the vaccine xx

[svfarmer]

Hi and welcome to the group - that’s the thing with Lupus you never know when your going to get a flaire up - the only place I go is to the supermarket once a week and out walking my dogs xx

[Minamoo1 in reply to svfarmer]

I know how you feel I dread even doing that only go shopping if I can’t get a online space hope your keeping well hugs xx

[Krazykat26]

Hi Minamoo 🤗 welcome to the group 💐I'm sorry to hear that you're flaring after so long symptom free. That's the thing with lupus isn't it..the wolf is always lurking even when things r going well!!

I'm classed as extremely clinically vulnerable n have been sheilding for most of the year now!! But tbh I'm glad that I'm not having to go out too much because of all the irresponsible people out there who believe that they r invincible!!

Please try to keep your stress levels in check as much as u possibly can coz we all know that stress drives lupus!! I'm glad that you've got your crafts to keep u busy.

This is a very supportive friendly forum..yes we're all ill but we're people too with lives to live n obstacles to overcome.. you're not alone 🌈😽😽xx