Do you ever wonder | Arthritis Information

 

I am hurting so much right now and I wish I could feel your pain.  It is a sad statement, but I wish I knew that someone was experiencing the exact same pain I have so I can ask them - How do you deal with it?  I know this is ridiculous but I think about it all too often.  RA seems too cruel and you wonder how in the hell are others functioning on RA?  Am I a wuss, am I not doing something right to cope with it.  Just wondering, do you ever have these wierd thoughts?????????RA is cruel and no your not a wuss. We all try to deal with the pain as best as we can. There are days that I'm fairly pain free then the next day I can barely move through the pain. Not only is RA painful but it messes with your mind. I don't know of any other disease that is as frustrating. Today I wish I could have called in sick due to pain but unfortunatly we are short staffed so I had to go in for my 9 hour shift. Try to hang in there and you are so not a wuss!!! Maybe some of the others may have some suggestions to help deal with it more than I can due to the fact I break down quite often still so I don't think I'm one to suggest anything to help.

You a wuss? Hardly. The pain is excuriating. Allow yourself to accept that as a fact and don't feel guilty when it makes you cry or want to crawl in a hole in die. People that don't have chronic pain haven't got a clue and they say the cruelest things.

But don't say those things to yourself. You are your own caretaker. Be sweet to yourself. Say, "it's okay, honey, you can cry. I give you permission. You can rest. You can scream. Yes, it is okay to feel sorry for yourself for these few moments."

Sometimes the pain is so bad that I wish heaven would come. But then, I am not done living. I have my kids who would be destroyed if I give up. So I don't. Then, I keep a running list of all the new things I am going to try as soon as the pain or the fatigue lets up.

It's okay to hurt and okay to say it hurts. Being brave is going through the hurt and making it to the joy. It is somewhere in there.

Roxy, you're an inspiration to all of us! I know how badly I hurt a few months ago. I could barely crawl from room to room. I wasn't out working, lifting heavy things, taking garbage from uncaring bosses. I wasn't doing it day after day after day. I have a huge amount of respect for you for struggling on - and for saying how much you love your job when it doesn't always love you. I'm rooting for you. I wish I were there to help you, because if you had a little bit of help, I think you could manage.

It really is a cruel disease. I had no idea - until I got it, it wasn't on my radar at all. I never understood how people came to be walking with a cane or using a motorized cart. I always took what I had for granted. If only every person had to spend a single day with this pain, life would be different for all of us.


I'm sorry your hurting.

There are a few things I do to try and help me cope with the pain (in no particular order):

-put on headphones and listen to loud music
-put on three heating pads on various joints
-take a shower(hate baths)
-take a vicodin
-call physican and whine(complain)
-lay down flat on bed and cry (not recommended,just makes pain worse)
-work on computer or play computer games and really focus on activity(sometimes this works)
-force myself to go out on a trip(store,visit,etc)
-use my tens unit(sometimes makes pain worse)
-find mindless activity(word puzzle/jigsaw puzzle and really try to focus on the task
-watch movies(usually blood and gore)
-play chess or other games
-get my children to engage me in conversation,this helps to take my mind off of me and onto someone else
-anything that gets my mind off of the pain and onto something else
-asking people to pray for me

That's what I do to cope with the pain. They all don't work all the time(except the praying)but I have to try something. I refuse to give up. I may cry for awhile but then I can usually get over it and stop crying. I sometimes cry myself to sleep. I don't see that as giving up because maybe that's what I needed, sleep. Sometimes we're too tired to cope and we need to rest.

It also helps to take better care of ourselves and listen to what our bodies are telling us and not feel guilty about it. Maybe we deserve to pamper ourselves a little and take life a little easier. Ask for help when we need it instead of trying to do it ourselves. Maybe we need to slow down things in our lives or find a different approach to doing something. The bottom line is we need to think of ourselves so that we are well enough to think of others. Someone always has it worse.

Well those are my weird thoughts. Take care and I hope you feel better.
Yep Roxy - I got that pain too, and oh yeah that ones the worse.  I know the only ones who really understand these pains are people like the ones here.  To handle it I actually tend to turn inwards, but my family has caught on and know to come to my rescue.  Of course there are the pain pills but mostly I try to ignore it - read (of course I have to read everything again because of the pain pills), listen to music, cry. laugh, anything not to think of that excruciating pain wracking through my joints.  You are not a wuss and you are a friend and inspiration as many others are, my newest secret weapon is when the pain is bad just think of what you all are doing!!  Hugs and good  vibes. Great.  We have established I am not a WUSS You can do it, Roxy - minute by minute, day by day, you can do it. Every minute down is one less minute you have to work. I hope today is a little easier on you. 

Not so long ago. I turned to my husband and said, 'Well no-one would miss me if I weren't here, would they?'

He was so shocked that it took a while before he made any comment and then he was in turn cross and then concerned.  (He is my rock, and has been with me through all this, as I was diagnosed only 3 years after we first got together 24 years ago.)

I didn't mean it.  It just popped out of my mouth, without any real thought behind it.  I was just feeling SO low and everything was getting on top of me, and sometimes, no matter how understanding your partner/parents/children/friends say they are, they just do not understand quite how low RA can make you feel.  It's not just the pain, the tiredness and the physical stuff; that's bad enough, but how it makes you feel inside too.  How much less of a person you sometimes feel, how frustrated you can sometimes get.  I tend, also, to 'go inside myself'' or as I describe it, I 'hibernate' until I start to feel better.  I tend to become a TV junkie, even music doesn't always do it for me, and I love music.  If I can physically hold a book long enough to get into, I also sometimes escape into fantasy books.  I've just started reading Stephen Donaldson's 'Thomas Covenant; The Unbeliever' novels again after 25 years.

I don't know that hibernating really helps, but I don't work any more and the voluntary work that I did a couple of years ago, I had to give up as I needed my back operated on and I've never really felt up to going back to it.  I started painting a number of years ago and I keep promising myself to get back to that, but never quite seem able to.  I used to have a good circle of friends here, but some have moved a long way away, although I do speak to them on the 'phone and those that are near are busy with their own lives and families, most of them with young - teenage children that need their time, and my family are not near me at all, with my husband's all in Sicily.

I don't know where all this outpouring has come from, because when I don't feel low I'm quite an outgoing and chatty person whom most other people would think of as confident, bright and happy.  I just don't feel like that person inside when I'm feeling low.  The past 12 - 18 months have been the worst mentally for me since I first got RA 20 years ago.  Physically I have certainly been worse, but I have certainly coped mentally with it much better in the past.  I don't know why this is, it just is.  (Could it be some of the drugs I'm on?)    The thing is, I KNOW what I should be doing to 'snap' myself out of it.  I have given and received all the advice needed over the years but I don't seem able to draw on it and put it to use for myself at the moment.

         "My get-up-and-go has got-up-and-gone so far away that it doesn't seem to know it's way back!"

Sorry for off-loading like this, I guess I needed to.  I don't think I've expressed these thoughts to anyone quite like this before, not even my husband, my Mum or my sister and they are the people closest to my heart.

 

Aurora, I haven't thought of Thomas Covenant in decades. I used to really enjoy those books.

Reading everyone's posts, I'm struck by what a universally tough time this seems to be. Everyone's job is imploding, people have been awful, and life has been just downright rotten. I hope it changes soon - that either the job situations improve, or you find acceptable alternatives. This seems like something that should get attention from more than just this forum.
Aurora,  I am glad you poured it all out.  It helps, believe it or not.  The problem with RA is it takes away your get up and go away and along with that your self esteem.  As you know over the many years you have coped with RA, it always changes.  Lean on your hubby, he sounds great and come pour yourself out whenever you please.  We will always see you as at least half full

Even though they hurt horribly, i can't roll out of bed without being pulled sometimes from my husband.

A good day when i say it is a great day, i still hurt horribly, wear a brace on the hand and don't go out cuz i don't want to walk too much cuz of pain.  And that is a great day.

Remember this, some talk about going and going and going with their pain because it isn't as bad as most who can't go go go.

It's bad for them, but not as bad as others.  You might have the kind of RA that is worse than others like mine.

I was told by my doc office that has literally thousands of patients that i have one of the worst cases they have ever seen.  It helps me not feel too bad for being in pain and not going to visit people etc.

There are alot of times when I feel completely miserable because of pain and fatigue. The one thing that always sticks in my mind when I start to feel really down about my disease is the endless number of people who are terminally ill and the children out there with things like cystic fibrosis and leukemia. It makes my pain seem so  insignificant and I suddenly feel stronger. I am grateful every day that I only have RA to deal with. There are times for all of us when we do need time to cry or be angry...but that is how I get perspective on my situation.  Everyone copes differently, I do have a little glich in my system that I am sure some shrink would love to pick apart though. I tend to feel guilty if I start to feel sad or as I say sorry for myself. Those emotions are normal and okay and in my honost opinion good for everyone else dealing with RA...I feel bad for yall but I just cant help getting really guilty when I begin to entertain those thoughts. Maybe its a nurse thing, or maybe its a Taurus thing
Copyright ArthritisInsight.com