Now I have improved the way i feel about RA .........

theresa4

It's taken nearly 7 years but I think I've come to terms with my having RA
The thing I cannot come to terms with is my families lack of understanding and lack of care. I know it's not easy for them to watch but I have to live with this constant pain and gradual reduction in my self ability.
My OH has decided I'm just lazy and do nothing to help him with the business as I managed to go out with my friend for a day to listen to her as she's being tested for a cancer that killed her grandfather, she has a pre cancerous condition. Oh did I mention this was the first and only day/ hour out in over 3 weeks and I can't see that changing in the next few more :-(
Yep that's me I'm putting on the constant pain, falls, exhaustion, sleeplessness, waking up at 3 am in pain listening to him snore,
I'm snappy and irritable and have no patience yet my kids are moaning at me because I said I'd do something but haven't managed it already as I'm too tired to read my daughters personal statement for uni and help her consolidate it to the required word count. I feel so bad bug my brain isn't in gear and I can barely think. It's not that I don't want to help her. Why can't anyone understand I just need rest and a bit of TLC right now a bit of understanding I'm not purposely trying to make their life harder.
I've not enough spoons to get me through the day right now let alone enough to do everyone else's bidding. My spoons are depleted, my flare is spreading through hands wrists feet ankle knees hips ribs shoulders jaw. My fibro is flating my scalp id sgony with pins snd needkes And my family are seeing a lazy *****
Moan over

valval

first thing you need to go see rhummy or doc you need far more help than you are getting. now as for family this is far more complicated but it seems as if they are taking you for granted it time you sat them all down and told them the facts of life explaine you love to do your best for them but they are old enough to understand that you are not super woman and also need help ((())) val

theresa4

Hi Valval

Thanks for your reply
I've done the sitting down with fam sent them the spoons theory all to no avail all they see us the few times I do something for me and that's it I'm lazy lying putting it on etc.
as for rheumy they are trying but as I've tried 5 biologics and waiting to see if I get approval for desensitising to bio no5 as after that I will not be approved for further treatment so it's out of their hAnds. Cant say I'm happy out this but I'm lucky in that they e tried so many. Not well at mo so steroid out of question as it further depletes Mu immune system
Just needed to sound out really not expecting any new tact when it comes to my lot just know on hear no one is rolling their eyes at me

frogmella

Hi Theresa4,

As you don't want advice I won't dispense any but Ijust wanted to let you know that of course I am not rolling my eyes. And to send you a virtual hug ((()))

Love Helen

theresa4

Hi Helen
Thank you hug gratefully received

Numptydumpty

I really do feel for you.
We are always here to listen to you.
((((()))))
Numpty

hileena111

Just remember we are all here to listen to you....be it good new, bad nes, moans or whatever
Sending you ((((()))))

Love
hileena

dibdab

Sending more hugs and positive thoughts-hope the medication situation takes a positive turn soon. Families are tough aren't they. Maybe part of their reaction is because they feel helpless in the face of your struggles-my OH and I had a long talk about it because we got to the rolling eye stage, and what I felt as intolerance was really his unhappiness because he couldn't help me/ease the pain/ make it right etc. It doesn't help us greatly, but I think in their place it would be something I'd struggle with too. As for teenage children- aren't they all inherently egocentric- what they need is a hefty dose of reality! On the positive side my erstwhile teenagers are now two fabulous 27 year olds who tackle life head on and are more aware of other people's struggles because they have lived with mine for so long now-hopefully the same will be true for your daughter too.

Take care of yourself.

Deb x

barbara12

Aww theresa
You are having a rough time, its good that you are coming to terms with things, but I do think we all need help with this,families eh ....I find if you can stand up then you are ok, must say my OH is good, but I still sense he doesn't understand, but then how can he.
You really needed that moan, it will do you good to get it all out to us lot, at least we understand.
You take care ((((((())))) xx

villier

theresa you moan all you want we are all here to listen (((())))s.......marie xx

bubbadog

Theresa, you can moan all you like! we all need to have a good moan now and again! Send you a BIG (((HUG))).

lulubell69

Hi Teresa
I am in a very similar situation to you at the moment so I can empathise. Although my oh is very good, my teenagers grew up with me being poorly, (I have ra for 9 years) so they know nothing else. All my family, mam, sisters, in-laws etc don't bother and I honestly feel they don't care. If I mention my RA they are not remotely interested, I can almost hear them saying 'here she goes again', they don't experience the pain, stiffness and depression so how can they possibly understand. Like you, I am on the bottom and just wish someone would take an interest and really listen and try to understand not just the pain but the emotional turmoil which engulfs me on a daily basis now.
In all the years I have suffered from RA, not one person has ever asked me what it's like to have arthritis.
Sorry, didn't mean to go on about myself but sometimes I think it helps to know that you are not alone.
With the support of the good people on this site I hope you are feeling better soon.
Take care
Les
x

theresa4

Hi evryone
Thank you so much for all your replies it really does help to feel soemone understands.
Lulu My kids have grown up with it too for 7 yrs my youngest was 10 at the time but none of them understand but my hubby is still not speaking to me and I know he resents my being ill, the most he says at the minut is 'well im ill too but I still work and get on with it'
Youre right in saying he doesnt understand but he isnt even willing to try how can he compare a cold and headache with chronic daily pain, exhaustion and drowsiness from pain rellief. I dont remember the last time he had to crawl to the loo, and hope he get there in time :shock: :roll:

But I digress I am grateful to all my AC friends who get me through please know Im often thinking of you all but lately havent done much typing as it is just too painful.