Oh, it has been one of those really stupid days when you feel down because you're not feeling good, you're in pain, you're fighting for the help you need, and you're just tired of dealing. And, most of all you're tired of being down about it.
I wake up and I'm ready to take on the day. That's until I actually move. Pain killer or no? No. We might feel better if we just get this body jump started and fed. Feel better? No. Not yet? Wait. It'll happen.
Read a little AI and answer email. Feel better? No. Not yet? Pain killer. Sounds better. Maybe I'll try doing some reading or writing first. Wait. I can outlast the pain. I'm tough. I can do it.
Well, that worked out for a little while. Now, I'm exhausted. I hate fatigue. Can't they just do something about the fatigue? That'd help. And, my shoulder hurts. Now, my spine. Oh, just don't go there.
Try and do something else like watch TV. Did I say how much I've come to hate TV? So, I try to write. Then, I try to read. I sit up. No, better lay down. Can't I just get comfortable?
Still hurt. It's after lunch. I've tried. Take the stupid pain pill and quit complaining. Maybe then I'll feel up to doing something else. Wish I wasn't feeling so weak.
Well, that gave me a rush of about two seconds. Pain eases, slightly. I try to do some dishes or cook something. Call a friend or hear from a friend. Most of the day has gone by. I hate when days pass so quickly and I feel like I've nothing to show for it. I miss my overachiever days. Now, I'm the turtle that plods along. Do I progress or am I just trapped in some time loop (watch way too much Star Trek and SG-1)?
I want to do everything I used to do. And, I'm stuck with what I can do. I'm like a caged animal and it's my body that's the cage. Let me out of here! I'm not done living. I don't want this crippled body or this damn pain. Don't tell me I'm just getting older. It's just a disease, a stupid disease. Why can't they make me better?
I'm going to break out of this. And, I'm not going to stay down. But today, I was down. I was weak, sick and hurt. And, a pain killer was my best friend.
Tomorrow is going to be better. I'll wake up and it will be a new day.
Oh Deanna.... I know how you feel... especially in the morning, when I've had 8 hours of sleep, I just want to go back to bed. Seems better after my shower, but somedays, I can't move... no energy.I know how you feel Deanna. I used to be athletic and active and on the go all the damn time. There are times that I feel like a prisoner in my own body too. But I am not a prisoner in my own mind and I strive to keep that as active as possible. Even this forum does wonders for me. Even when I can only sit here for a bit at a time.
Do not worry that you have nothing to show for your day. You don't have to show or prove anything to anyone. And if they don't understand that then well pfffffffft to them.
I wish I knew why they can't make us better. I often wonder that myself.
Remember, it is the turtle that won the race.
Tomorrow is another day. And you will have all of your friends here waiting for you.
I know how you feel....the days seem to be such a challenge sometimes...I hate the fatigue too. I can fight pain, I can live with pain. But when I am tired, I cant even think. And I have to give in to it or it will take over anyways. And when I wake up I am just a little less tired than I was before. It has been worse lately. And I was on a roll for a while there....but my few weeks of being busy have caught up with me...which sucks because my knee is so much better and I want to do more...My brain wants to do more, but my body is just not listening. I am trying to get away from the pain pills...I have only been taking one at bed time. So, I just move slow and do my best....thats all we can do right?
"So, I just move slow and do my best....thats all we can do right?"
That or Meth. :|
I'M KIDDING. Jeeze. I know how you feel. It's the fatigue that pisses me off the most(excuse me) It's just so hard to understand whysometimes you can feel so rediculously drained, yet you haven't even DONE anything. Argh. And it's even harder for those around you to understand it. I guess when you feel normal, it seems like a stupid thing that we should be able to control. But we really can't. They should make a med for it. Or not...it'd probably come out like meth...LOL I'm sorry I'm sorry..I'll hush...oh now I got the giggles...
Sorry.....but with my ADHD the meth would probably put me to sleep!Deanna, Hang in there. You have been having a rough time of it but your spirit is strong. Do something just for yourself today that will lift your spirits.-Maybe a nice hot bubble bath or a really special food you crave. Do you have one of those zero gravity chairs you could sit in in front of a good movie- preferably a happy one? There will be other days you don't feel this way. My prayers are with you.Deanna - I live on the other side of the world to you but we face the same problems - namely ignorance regarding disease & especially autoimmune diseases.Oh sweetie, I so understand. You are right, tomorrow is a better day and if not, theres always the day after that! Keep fighting one day at a time.
Love and hugs
One last thing - take your pain pill earlier girl. I have learned my day is ruined if I put mine off. By the way, you are sick of TV. Yesterday my niece came over and wanted to watch a soap. I have never watched a soap in my life. I told her to tell me about it because it sure sounded good to take one hour during the day to get absorbed into other's problems and they are all good looking
You are a writer gf and RA will never take that from you. You are also an amazing inspiration and creative problem solver. There is so much to the Deanna we love. Cassie
Where are you that the politicians want everyone to work regardless of health status?
Isn't our elected government paid by our tax dollars? Are people really getting that greedy that they would force people who truly can not work just so they could buy that fancy new car or that sleek new boat? I wish there was some way to put them into the pain, stiffness, depression, and frustration that we feel because we can not work because of this disease. I bet they would change their minds right quick about forcing everyone to work. Must be nice to be so normal that you can bend (no pun intended) the policies to fit your own greed.
Cassandra, I can't believe what you just told us. That's outrageous. I can understand them being borderline on my being able to work because mostly I look just fine. Once, I get to moving it's a different story. Still, I can't work.
But what about the mentally ill, those in wheelchairs, mentally impaired, those without arms or legs or more? I don't get it. I could understand this when I was a child and one of my best friends had polio and epilepsy with mental impairments. But, to me, she was beautiful. I do remember how others looked at her and treated her though. Are they truly so blind?
This is the laziest politics there is. You have to take care of the weakest members in your society in order to have a strong society. If you don't, you will crumble. It's just like some of us have to use a cane or braces to walk in order to hold up the rest of the body. A society is a body. And while all parts do not function equally, all parts are necessary.
I wish at some point that I could regain enough strength to speak out about these issues. I hope to do that eventually with my writing.
In the meantime, keep raising this issue with those around you. If you can write a letter, do so. I know this for sure that God will not tolerate this kind of attitude. Life has a way of making all of us eventually unable to work. Accidents happen, illnesses and finally old age. The naivety of those who cannot see this are cutting their own throats.
It is one thing to want to bring all the disabled to their highest potential. I'd like that. But I need help now to accomplish it. Are they going to bring aides into the workforce to help the severely disabled go to the bathroom, dress themselves, provide them special equipment? Or, well they just punish them for not being able to work by taking their disability income and medical care away from them? Will they starve them to death? Will they allow their illnesses to sift them from the population? This is what Hitler wanted. It is one of the most dangerous ideas ever conceived.
It's a real shame. I hope this does not happen. I would be interested to read more about this.
Thanks for all the encouragement. Today has dawned brighter. And, Roxy, I believe I will take that pain pill earlier. Oh, I already did.
Katie and Crunchy you had me laughing my head off last night when I read your discourse on Meth. Now, that's some interesting problem solving. I kept thinking how you turned a depressing post into something hilarious. Thanks.
Cassie, That is crazy. It reminds me in the beginning my RD said he never approves long term disability because he thinks it does people an injustice because they quit trying. I can see some people may be that way but most want to do all they can. Thank God, he realized I am one of those and supports my LTD. It seems like governments are going backwards instead of forward. I thought society would become more aware as I grew older but in fact, society has become more archaic. I am so sorry that you have to struggle. I think it would be impossible for me to work full time but who knows what we can do if we are forced to - even if it makes us more crippled and shortens our lives and eliminates any qualityy of life. I have not been able to find out a lot of information reDeanna,
I know how you feel and it is so easy to get down in the "dumps"... and until you live with RA you just don't 'get it'. I've been a RN for 23 years and have had numerous patient's with RA. Didn't understand until a year ago when I was diagnosed. Now I get it (in more ways than one!)
Anyway...keep plugging. I know it's difficult some days, but you just have to PRESS ON! There are days that I have to literally log roll out of bed...waddle to the bathroom....but it feels so much better if I just get in the hot shower right away. My pain and stiffness are worst for about 5 hours then it subsides significantly. I just try to set goals every day and push myself. It helps that I work fulltime...makes me get up and get dressed. I know it's scarey....for me too...as I face this alone since my husband left me at the time of my diagnosis last year. I just know when I look around there is always someone else who is worse off in many ways. I try to count my blessings as I know I have many! Take care and know that even though there are days you will accomplish little you are still accomplishing something. Press on my dear! Pam I'm on MXT, Enbrel, Prednisone, Actonel, Thyroid, Folic Acid, Estrace
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