Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
It's no secret that I've been really depressed recently. Everyone sees it. Professional and personal relationships are suffering. My quality of life is down to nothing. I'm now months into what seems to be a never-ending pity party.
I know that people don't "mean" to be rude or unsympathetic or hurtful in anyway. In fact, I know that they say the things they say BECAUSE they are trying to be sympathetic and caring. Unfortunately, that's not how it comes across. With the exception of a few people who know me on a very personal basis, most others just come across as rude and ignorant.
In the past week, I have repeatedly been told time and time again from different people that I just need to "find the bright side", "make light of the pain/situation to others", "pull myself up by my bootstraps", "it's a choice!", "you're giving up", "you'll get better; you won't always feel this way" and "you're young... you'll learn how to handle stress better with age".
I am just SOOOOOO sick & tired of people telling me stupid things like that as if I'm making up this disease. I am in pain 24/7 and NONE of the people saying these things has the disease or anyone in their life who has it. The constant pain has taken away my quality of life as I am not able to do the things I enjoy (painting, writing, playing various musical instruments, etc.). I am currently only working full-time to pay bills and I can barely make it through the work day/week before crashing on the couch each night.
I can't do house chores anymore! I am lucky if I can do laundry once every 2 weeks and even then, it doesn't get folded and put away! I can't tell you the last time I cooked a meal for myself! And yet people expect me to do the same things I did before at work or in my personal life.
But when I DO try to tell them what's going on or why I can't do what I used to do, they think I'm looking for attention! WTF?!?!? I just can't win! And people wonder WHY I'm depressed????????
I am just venting here... I'm having a REALLY difficult time dealing with this constant pain. I am on sleeping pills for night and I STILL wake up from the pain... I feel like my life has been taken away from me.
I know there are others here who know how I feel... unfortunately.
I know that people don't "mean" to be rude or unsympathetic or hurtful in anyway. In fact, I know that they say the things they say BECAUSE they are trying to be sympathetic and caring. Unfortunately, that's not how it comes across. With the exception of a few people who know me on a very personal basis, most others just come across as rude and ignorant.
In the past week, I have repeatedly been told time and time again from different people that I just need to "find the bright side", "make light of the pain/situation to others", "pull myself up by my bootstraps", "it's a choice!", "you're giving up", "you'll get better; you won't always feel this way" and "you're young... you'll learn how to handle stress better with age".
I am just SOOOOOO sick & tired of people telling me stupid things like that as if I'm making up this disease. I am in pain 24/7 and NONE of the people saying these things has the disease or anyone in their life who has it. The constant pain has taken away my quality of life as I am not able to do the things I enjoy (painting, writing, playing various musical instruments, etc.). I am currently only working full-time to pay bills and I can barely make it through the work day/week before crashing on the couch each night.
I can't do house chores anymore! I am lucky if I can do laundry once every 2 weeks and even then, it doesn't get folded and put away! I can't tell you the last time I cooked a meal for myself! And yet people expect me to do the same things I did before at work or in my personal life.
But when I DO try to tell them what's going on or why I can't do what I used to do, they think I'm looking for attention! WTF?!?!? I just can't win! And people wonder WHY I'm depressed????????
I am just venting here... I'm having a REALLY difficult time dealing with this constant pain. I am on sleeping pills for night and I STILL wake up from the pain... I feel like my life has been taken away from me.
I know there are others here who know how I feel... unfortunately.
I know exactly what you are talking about. People saying, "you look good today. I can tell you're not in pain." Jeez I hate when people say things like that. I have pain twenty-four/seven.
Pain also awakens me at night from sleeping. I have to admit, it's a hard way to live.
One of the very reasons that this is my favorite message board is that no one judges, people are informative, courteous, helpful, and especially, I find people going through the very same issues as I do.
I flared again this past week and the pain and fatigue were horrendous. I had to call in sick (FMLA) to work a couple of more days and am starting to be concerned about my career.
There is so much to think and worry about with this durn disease. I'm glad as well that I'm not alone but really sorry that you have so much on your plate.
Warmest regards,
TheWino
(silly me) said today she thinks this illness is brought on by the way a tough life isn't handled properly. I echo your WTF!. I told her I reject
that way of thinking and recapped the illness. We were having a chat so my response was warranted but you are right SecretSurvivor, trying to explain much feels wasted. I feel better Sunday after resting Fri nite & Sat so its interpreted as my changing my mind about how I feel, etc.etc.
Back to not saying anything to anybody....thank goodness for this board.
BTW I just hung up some laundry that had been hanging up to dry-for 11/2 weeks, I'm with ya.
I, when I was diagnosed last fall, was similar. Couldn't function, clean, fold, cook. Cried and cried. Constant flare, fade, flare, fade,flare,fade etc. It was overwhelming.
I want to ask you something. I see you're on Plaquenil and mobic and prednisone. Is this all? Honestly Plaquenil is one of the most mild dmards, and is best used along side a heavy duty one like methotrexate or arava. Are you on anything else, or should I say what's the doc doing to get you to a better place?
My current treatment is "ok". I am switching to enbrel, but I've been functioning on my current treatment of arava and Plaquenil. Functioning enough to live a somewhat similar life to the way it was before. (I'm switching because arava is tearing up my stomach horribly and now I've reduced my prednisone in attempts to be pred free, I've realized my treatment isn't as good as it seemed with increase in pain).
My point is, since I'm not sure your current treatment, you really should demand a change if something isn't working. You've hired your doctor and pay him for his services, never forget that. You aren't satisfied, saysomething! We have that right, to demand another treatment if it currently isn't working. It can take months to see a huge difference with these meds, BUT there shiuodve been a noticeable change within 2-4 weeks. If not, discuss a change or adding.
It does get better, like they all said. They've all told me the same thing, and slowly....very slowly I've come to see they're right. It will get better to a place of functioning. It takes a lot of time, and I'm sorry for that. But it will.
I do apologize for not knowing more of your history, treatment and how long diagnosed.
I finally said something has to change! I refuse to keep living like this! It took a month or so, but I was able to get in and get relief.
you lose hope when you work all day long without your shoes on or your bra snapped and your dignity in the toilet from trying to keep up a facade and asleep in driveways, couches, and toilets.
they either have to get your pain under control or something has to give from the total number of spoons you have to give out each day.
if the whole lot is going towards two things:
1. pushing the presence of pain away while sleeping
2. pushing the presence of pain away while working
then, yes, this is enough of a stark reality to what was before to make you feel as you feel.
we hear you.
no one else that does not have a chronic disease is going to be able to validate you. i have learned to self validate myself in front of my friends and not request feedback.
it's not about hobbies, passions, dreams, or engagement for you right now, it's about one day at a time
don't look for their validation. you validate you. vent anytime here we all have felt the same way, exactly, or feel now the same way, exactly
hugs
R
Maybe right now you are so limited on doing things -especially things you want to do..but with the right meds-right PT? you WILL find a way to do things-even if it isn't the normal way of doing things..you will find your own way and you know why I can say this? Because if you really want to do things..you will find a way.Pain or no pain we can not let pain control our lives.
WE have to find a way to lessen the pain and do things. But remember we do care and are here with listening ears
I am desperately trying to find a job with benefits so that I can see my Rheumy again for treatment as I have not seen her since December and need my meds ! Once you have the right treatment you will feel so much better and the depression will lift. I know this from having treatment and then losing it. Please get the help you need from your doctor to find the treatment that will be effective in your pain management . Don't lose hope. I get through each day knowing that someday I will again have my RA treatment back and will be better again. Don't let depression pull you down because then you are dealing with emotional pain along with the physical pain - which is an unbearable combination ! I will keep you in my prayers that you don't lose hope for better days.
Thank you for sharing. It helps us all feel less alone. I hear ya girlfriend. Your description is spot on! It shows how hard having RA is. You are doing what you can say by day.
When I accomplish something small like finishing folding and delivering laundry to my families closets I celebrate. Sometimes I cry tears of joy. Sometimes I order in for dinner (a treat to not cook and clean) or watch a free movie (my pick -- not my kids or husbands!). My point is I do something for myself. I reward myself for accomplishing a once small task that due to RA has become a big task. No one without RA understands this (or RA itself for that matter). Find something you like and find some aspect of it you can still do with RA. I love films. So watching a film is a reward. It may seem small but it gets me through the days when I feel the worst and no one around me "gets me".
I am sending you a big hug through this post.
It's not you--it's the darn RA! You are a fabulous human being. You are dealing with a disease. It's OK to feel this way. I heard it gets better. Hang in there. I am rooting for you!
XO
For a long time I tried to do exactly what people are telling you to do.............buck up,, push the pain away mentally, focus on the good things, etc. Guess what? It didn't work. I was living in denial and getting more and more depressed without even realizing it. Depression starting affecting my speech. My husband pointed out that I talked soooooooooooooo slowly and was struggling to find words. He was concerned about stroke. It was depression! It's important to talk to your doctor. It's as important to treat your depression as it is your pain. Having my depression treated didn't stop the pain, but it did make dealing with it easier.
No way can others understand that do not walk in your shoes.
I'm so so sorry you feel this bad.
Yes we do care.
I agree if your feeling this bad it's time to look at your treatment plan.
Pain management, trying another med? you simply tell your doctor/doctors you want as much quality of life as you can get.
You deserve it.
My goodness I do not know how people with RA manage it work full time & run a house hold, especially when it's not controlled well.
I truly hope you gain some relief.
Please check in.
We get it.
We care.
Sammy