Its not good when--: I am not on any meds at the moment... - NRAS

NRAS

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Its not good when--

VeronicaF
VeronicaF

I am not on any meds at the moment, and its not good when I am sneezing praying I might have a cold, I have sneezed more than once today and I have had the best day in ages, I feel almost normal

to me a cold =normal, as other than the ill you feel when you have flare, I don't get ill anymore no colds nothing and can't remember the last time I was with a cold

everything is zapped before it starts

I sometimes wonder on my good days my immune system is busy with something else rather than attacking me?

wouldn't it be good if they gave you something that kept your immune system busy on something else

19 Replies
oldestnewest

and its not good when your having such a good day, you don't want it to end to wake up the next day to find you feel a 100 years old again

janny55
janny55 in reply to VeronicaF

Oh Veronica, isn’t it so ridiculous I can go to bed feeling reasonably well and active thinking to myself oh I’ll do this,this and this tomorrow, wake up in agony feeling like the duvet is a great big heavy boulder not being able to lift it off me, almost crawling to the toilet and having difficulty just pulling the chain 🤷‍♀️ I offered to grate some cheese the other day, I couldn’t do it! All these things and more I use to take for granted, just want to be me again, rant over sorry 🤗 I’m really considering the CBD oil though 😁x

VeronicaF
VeronicaF in reply to janny55

I am the same, I want to sleep in in the morning, but I get out of bed because the longer I am in it I know the worse I will feel.

I can't even lift a kettle up in the morning

but I have learnt to open a hot water bottle with a screw driver, and tighten it up with one :O)) yeah

I try to do the thing I know I will struggle with in the mornings in the evenings, sometimes its evenings too but a lot less than mornings,its the stiffness that adds in the mornings.

I was saying to hubby yesterday, its a bit like cinderrella ( please excuse spelling)

when the clock strikes 12 am and she turns back to rags

janny55
janny55 in reply to VeronicaF

Yeeees definitely it’s weird really 😱 same with kettle 🤦‍♀️it’s the silliest of things you wouldn’t think twice about doing before but now, if I go anywhere I check out all the chairs to get the highest one so I can get up off it, good tip with the screwdriver thanks 🤗x

VeronicaF
VeronicaF in reply to janny55

if I get anymore I will share and you me please, someone on here said put one of those chip baskets in saucepans for veg, so instead of lifting heavy saucepan, you just pull up the basket when cooked, I keep forgetting to do that, my wrist bands help a lot, they give my arms more strengh

janny55
janny55 in reply to VeronicaF

Yes definitely will share with you , still learning at the mo 🤗x

VeronicaF
VeronicaF in reply to janny55

me too

janny55
janny55 in reply to VeronicaF

So confusing 🤦‍♀️🤦‍♀️x

Janny55 your description of life with RA is spot on, feeling like wonder woman for a day and making plans for tomorrow only to wake up..... and you said it so well 👏👏👏👏 oh yes the feather doona does indeed feel like a boulder somedays. But we grin and bear it, 😬 rant and rave about it, try to ignore it, cry about it 😢 and also try to have a laugh about it.🤣 Thanks for that, laughter really is the best medicine some days 🌼

Ha ha ha ahhh daisychain your right, what’s that song I get knocked out but I get up again 🤣🤣 glad I put a smile on your face 😁 ps my fav song at the moment is the trolls where princess poppy sings get back up again 🤣🤣yes I’m 55 going on 4 in my mind anyway the body has other ideas 😁🤗xx

Go the CBD oil and whatever helps wherever it helps I say. I’ve tried CBD and the other oil and it really stops the pain in the day but at night it spins my head out, feel every ache and pain and I can’t sleep. Catch 22 🤔. Ive got 2 knee replacements and an ankle replacement to have, starting in about 2 weeks, I find out next week. Yay, can’t wait, another year of surprises coming up. Yes, 🎵 🎵 I get knocked down but I get up again ain’t nothing gonna keep me down 💪

Ha ha ha you go girl daisy 👏good luck with all the replacements, let us know how you get on 🤗x oh yeah its down 🤣 I put knocked out 🤣🤣🤣xx

Hidden
Hidden

I hadn’t thought about it until I read your post but I haven’t been down with anything else like colds etc since diagnosed about 15 months ago (apart from RD itself & flares etc) & you would think the opposite would be true, being immune suppressed? Or are you still getting them without the immune response, bit worrying if so? Are you not taking any meds now by choice or waiting on new ones? Good luck with it all, I’d love to just feel normal again, sorry you’re a bit low x

VeronicaF
VeronicaF in reply to Hidden

I due to go on new meds thanks kerena I am waiting for my eyes to be checked out first before starting it.

I had one before and didn't do well on it so thought I could do it without, but when I bad I realise I can't, when I feel good I think I can, round and round you go until it effects your joints and they start to look abnormal ,then you know you can't.

I am okay though thank you , I had two really good days being today but I do know it can all change tomorrow.

the days that are bad you quickly forget the good days and you forget your get good days again

before RA I was always getting colds, sore throats chest infections one after another but now nothing, I am sure once on meds I will be back to having one after another.

Hidden
Hidden in reply to VeronicaF

Same here, had 6 weeks off MTX & felt like old me, no brain fog, sickness, fatigue etc ... then started flaring ☹️ So know what you mean.

I hate taking all these drugs but have caught nothing since RD (like that’s not enough lol) which is weird. Hope your eyes ok & whatever you try next works; does make you feel like a guinea pig at times x

VeronicaF
VeronicaF in reply to Hidden

yeah I feel its like russian roulette , please excuse spelling, your damed if you don't take them, your damed if you do in other ways

Its hard to get your head round it all something

I look back and think ,this is stupid I was fine before how can you suddenly go like this?and have this? keep trying to find the switch to turn it off but so far haven't found it :O)

a tip the CBD oil is very good for pain,really good, doesn't make you feel funny or strange or anything but helps with the pain.

if you haven't had it?

you get it by searching CBD oil brothers.

I got the green one, two drops under your tongue twice a day

Hidden
Hidden in reply to VeronicaF

I tried some but didn’t notice much Veronica; it was decent strength too but maybe it’s cumulative effect & you need to keep at it; ciuldn’t make me feel stranger than all the prescription stuff 😊 It is hard to get your head round it all. It’s so b****y unpredictable too; can have what you think is good day, do too much, have to sleep for hours or flare. Seriously I bore myself sometimes 😬x

VeronicaF
VeronicaF in reply to Hidden

I think the more you have the CBD oil longer you have it the better it gets, I don't think its a 100 percent no pain with it but for me I like it better than pain killers, the only pain killer that help me was ibro but can't have it anymore because the damage its done to my stomach

I hope you get the right meds this time VeronicaF, yes the merry go round for sure, even tho I’m a newbie it seems day by day life atm.

Wierd about colds, you’d think the opposite be true. Your right about forgetting about the good days when a bad one slams you.

all the best, you’ve got a good attitude and this forum is awesome in helping us all get thru, loads of support and info. Def try CBD oil, loads of nutrients to strengthen the immune system too.

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