Testing, testing....

[DaleDiva]

Ok, so I was diagnosed recently after years of auto-immune type illness and my steroids where increased to cover my flare until I could see the Rheumy for treatment for the Lupus. The steroids did work so I thought maybe it was a co-incidence, whatever, and I didn't really have Lupus, it was just a virus and I was recovered... NOOOO!!! I reduced my prednisolone (slowly) back to my original dose.. and guess what? All the damn symptoms have returned! Anyone else as daft as me thinking they can beat the bloody illness

[roobarb]

Oh yes! Every time I feel a little bit better, or manage a night out, or something nice I haven't been able to do for a while. I'll think 'at last, this is it, the meds are working, I'm getting better.'

Sometimes Mr lupus is sneaky & he gives me a few weeks of this. Other times, it's wham bam thank you mam, & I'm back to being sick & tired of being sick & tired.

I can almost stop myself now from building up too much hope. But hey, where would we be without hope.

Keep smiling. X

[Purpletop]

Nah, I'll reserve that for the time when I have no pain, I look great, my hair has stopped falling and is growing back again, I can breathe without issue, my skin is unblemished and I have no symptom whatsoever. Haven't managed to get there yet, there's something going on on a daily basis and as long as there is something, I know my B/T cells are up in arms about something.

But I do appreciate the periods of lesser criticality and when a flare start to come up I do get despondent, so I suppose that is because I was hoping it will stay calm for longer.

Like Roobarb, where would we be without hope, it's what keeps us going.

[letslaugh63]

i'm a true virgin to all of this hav'nt been diagnosed with anything (hopefully wont be it just a blip)waiting for app for rhuematologist and i am so grateful for this site i could kiss arses because if i have nothing wrong with me you have all still helped through months of despair and if i have lupus you've so prepared me for things to come.i know it cant be beaten but neccessary to keep fighting anyway.if i am positive for it just wanna be like a lion trainer and whip it's arse to keep it in it's cage x

[Sher78]

It's not daft thinking u can beat it. Ok, u'll never b free from it & there's always a chance it'll rear it's head but I've had long periods (some that have lasted a few years) where I have been relatively 'normal' (depending on what u regard as 'normal').

After just having come out of a 2 year flare, I feel bloody fab, despite my bones. joints, muscles, ligament, tendons all constantly hurting, but I take my pain meds & it dulls it enough 4 me 2 have some sort of 'normality' again. If that's all I have 2 put up with 4 the next God knows how long, I'll take it, I'm used 2 it now, I can cope with it.

Lupus will not stop me doing things I want 2 do. Sure, it may make things harder 4 me & slow me down but sod it, I'm still breathing :0) I may have lupus, but it certainly doesn't have me ;0)

[DaleDiva]

Gad it's not just me then... pace and hope from now then.....

[Sher78 in reply to DaleDiva]

and good old 'Lupus arse kicking' ;0)

[brave]

hey! i havent had a normal day for over 12 months but when i think back over the last decade i have flared and remission plenty ,i have def had lupus since my twenties im now 38yrs,but was only diagnosed in june 2012 ,it answerd a lot of battles over the years ,however i used to obviously recover to what i assumed was normal in the past ,ive always had symptoms since 20yrs old but this was normal for me ,but i can recall feeling normal in the past ,but now .......im afraid not ;( im desperate to feel normal again ,hey ho ,i know theres a million people worse off ,but it doesnt make it any easier hey?keep well ,brave