Recently i have read two blog entries by two people who i chat to on twitter who suffer from RA and JRA and they both looked at "pain" i thought i'd cover it to but first links to there blogs:
http://rheumatoid20something.blogspot.com/2012/01/so-whats-pain-of-rheumatoid-arthritis.html on twitter @josephbayliss
So unlike my friends i never had JRA it came on after i lost my mother i was 23 years old. Before this i had a heart condition but i'd never been one for painkillers or generally moaning about joints hurting. I took life as most of us do, i wore high heels, i didnt think about what i was wearing there was no need to. I walked, occationally ran, enjoyed sports such as horse riding.
But then i turned 23 and my life changed forever because it is simply not just the physical pain its the mental pain you go through as well. Which many of you will never truly understand even after reading mine and others blog's simply because no one can truly understand unless you suffer to.
Many of my friends see me smiling and my happy comments on facebook and often twitter to but have you ever thought that behind that smile that "cheery vicky" there is a person crying? Do you realise the pain i feel every day. Because in truth i have a "yeah im good" face for everyone but the truth is only seen by very few such as my doctor my Rheumatoid friends both facebook and twitter but in truth not even they no the full extent of my pain.
I got asked once why dont you show your pain to everyone .. well ask yourself this would you like to show the tears rolling down your face at the thought of getting out of bed because of the pain in your feet, or crying because your awake again at 3am or the tears because you can not get comfortable because of the pain in your joints? No i dout you would. I feel weak admitting i am in pain, i hate taking pain killers i feel weak but i do because they get me through the tough hours.
See what many of you dont see my carer's do, the people who help me get through, they put a smile on my face, make me feel normal while they are here, they have become friends as they are simply part of my life, they have seen those tears, the fear but also the happiness when some thing happy happens, when i took that step .. when i come home from reiki and can get dressed myself.
You dont realise the pain of every day, mentally the pain of admitting you need help to get out of bed, to unplug your charger, to pour a drink .. to lift your laptop, sometimes even the remote. The shame of not being able to do your own housework having to reply on others family carer's (friends) its truely heartbreaking i am only 26. The fact of not being able to wash your hair yourself because of your disfigured hands, needing someone to help you put your socks on because you simply can not do it. Not being able to cook your own food, or even cut it up, have you ever been so embrassed you'd rather not eat instead of asking someone to cut your food up? No i didnt think so it hurts you feel so low.
People think i do alot because i go to concerts and i am going to the olympic games in the summer. But do you realise what my days really consist of .. well i'll tell you simple sitting in my house looking at the 4 walls not being to watch the TV any more because ive seen it before not being able to enjoy my music because its all i have on because the TV is now boring. I sit here looking at the four walls and if i am not doing that i am looking at the doctors/hospitals four walls .. ever felt that it is the worse feeling in the world. Have you ever gone through a day were you only see your farther and your 2 carer's in the morning and evening ive had that happen to me, some days i may see more people if i have appointments. I have no friends who live close by you see so i get really lonely. Thats why im on the net "your always on line" people say to me yeah because its communication with the outside world. I look out my window and think i wish i could go out there just walk out there breath the air, run through the rain, smell the spring flowers, but i can not that is reality.
Do you realise the pain of only being able to wear trainers all other shoes hurt or are just painful to even get on. Or the pain of looking at your clothes and crying cuz you know you wont get that on, looking in shops loving that top but knowing there's no point wasting money because you wont be able to get it over your hands or over your knee .. think next time you get those skinny jeans on i couldnt get them on i have to wear "big" jeans so they go over my knee.
As for the physical pain, i simply can only say it is constant pain move a joint and OUCH sometimes the pain is that bad i feel sick with it. It feels like a burning sensation, it feels like im being stabed over and over again it feels like ive broken a bone every time i push my joint so far the constant pain without those painkillers i'd probably be crying a lot more than i do.
So Rheumatoid you create a lot of pain but you have NOT beaten me i'll continue to have my life and enjoy my days with family and friends but i know you'll be there ready. Even the fun days you hurt me .. thats life could you live with it? Next time you think oh vicky does loads think about this post and realise i live for the fun days and dread the normal days.
Thank you everyone for reading as always
much love xx