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Posted 4/19/2016 3:00 PM (GMT 0)
Sometimes as I try to succeed in my life with work and personal relationships, I reach a point of feeling like I'll never be good enough. I'm really smart, but as my body limits me I have times of mental blunders and fault myself highly, rather than allowing myself room for error.

Do any of you seem to have more "off" moments due to the up and downs of your pain? Are any of you hard on yourself for having these moments?

Mostly looking for people to relate to with this post.
Posted 4/19/2016 4:41 PM (GMT 0)
Absolutely, we are harder on ourselves than anyone. This is when I step back & remind people they need to lower their expectation bar a little. We are limited on how much control we have over our health issues & for some reason we tend to forget that. So, lighten up on yourself & remember this too will pass. Take care.
Posted 4/19/2016 5:16 PM (GMT 0)
I'm not as hard on myself as I used to be.
I got you by a couple of decades.

I'm a lot more comfortable in my skin than I used to be.

I don't really have any advice.

We all come to an acceptance at some point. It's like mourning the loss of our former life.

Take care and God bless.

Rick
Posted 4/19/2016 6:47 PM (GMT 0)
Thanks for the replies, they're much appreciated.

I do need to find a way of getting a majority of what I'm aiming for without overwhelming myself... perfectionism and chronic pain don't mix well it appears. (haha)

Last night I came home frustrated after a work meeting, and just collapsed into bed. I just wanted to hide out in a safe place away from the demands of the world. Likely a sign that A) I needed more rest, and B) I need to not take on quite so much.

Thanks for listening.
Posted 4/19/2016 6:55 PM (GMT 0)
You are MOST DEFINITELY not alone. I can't seem to do anything right
Posted 4/19/2016 10:32 PM (GMT 0)
Just as everybody else has said, you are not the only one who blames themselves for their pain, mental exhaustion and not being able to do the things you used to be able to do. I am also very guilty of that. My husband tells me now and again when I have a breakdown about my body failing me that it's not my fault but being the strong headed person that I am, it's hard to understand that. I so wish I could do the things I used to be able to do, but I can't and that is so frustrating.

You are not alone. If you do find a way to stop this madness, please pass along your findings!

Well wishes to you and yours!
Posted 4/20/2016 10:32 AM (GMT 0)
Wow,Thoreau.Great Username by the way.I guess I've forgotten the pressures of the real World.

I checked out a few years ago.

Henry David Thoreau had some great ideas for the most part.

Hope you have a good day.

Take care.

Rick
Posted 4/20/2016 11:57 AM (GMT 0)
"Expectations are just pre-meditated resentments."

Although my partner and I have been a couple for 12 years, we do not live together. We each have situations and circumstances that, for now, prevent it. It's not a bad thing.

I have so many limitations...she has so many expectations. It's 'easy' to pretend to be normal for 36 hours on the weekends. Sustaining that, 24/7, would be impossible. Part of me fears the day that our situations change and we will be free to make a move.

Sometimes, it's my pain that sends me back to bed. Sometimes, it's my depression. I applaud you that you are still able to work at a job. That ended for me back in 2006. It is so not easy for me to 'slow down' to the pace that my body can manage. I can no longer 'push through'. I've had to cut back in order to satisfy the perfectionist in me. I have learned to be content, dusting ONE shelf perfectly today and hoping I can dust ANOTHER shelf perfectly tomorrow. I think you get the idea.

Redefining 'perfect', 'success', 'enough', has been a big help. Using my own 'measuring stick' instead of anybody else's has helped alot too.
Posted 4/20/2016 9:22 PM (GMT 0)
Intellectually, most of the time, I know I am not a failure. But emotionally, sometimes the thoughts creep in. Tends to happen when I am feeling down or depressed.

One thing that can help at those time for me is to think about all the effort and work I have put in for years fighting my disease and coping with it. When I really think about all that- the hours, days, weeks, months, years, I realize that I am stronger than many people. I have something called grit.

Its a new trendy thing for psychologists to research- but I bet a lot of the people here have it - do a google search on the word "grit" and see what you think.
Posted 4/23/2016 1:12 AM (GMT 0)
I can relate. I used to be harder on myself but like others, I've been at this for a while (10.5 yrs) and I'm easier on myself now. I also stopped working after 4 years of working in pain. But now I find I can still be hard on myself for the fact that I'm still not pain free after trying so many things. But again, I know it's not productive to feel this way, but sometimes I do. Just letting you know you're definitely not alone.
Posted 4/23/2016 3:57 PM (GMT 0)
learning to be self compassionate does help. it is an art form in itself, albeit you will find that your limitations as with your pain are diverse and other facets of life can be worked on. perception is a blessing and a bugger-and attitude and determination are tools worth not letting the dirty black dog steal. yeah a battle, so go to war I say!!!
Posted 4/25/2016 9:05 AM (GMT 0)
That's deep Turtle.Peter needs to put that up at the top of the page.

Tip of the Hat.

Have a good day Brother.

Take care.

Rick
Posted 4/25/2016 9:55 AM (GMT 0)
thx. very nice of you bro'.
Posted 4/27/2016 2:48 AM (GMT 0)
Absolutely. I struggle with this often and haven't been able to figure out the balance of being kind to myself, yet not allowing myself to become stagnate or a "victim." It's maddening when you're used to functioning one way mentally, physically and intellectually...then between the chronic pain, meds, exhaustion, cognitive and physical affects that seem to just spiral with chronic pain, you find yourself becoming someone completely different. Functioning completely differently. It feels as though in my personal journey, I'm at the beginning of learning to let go and allow for some new expectations of myself but have a LONG way to go, as I beat myself up quite often.

Some days are worse than others for me, one day I can still mentally multitask and juggle several things, then another I can barely remember my words, what I was doing, what someone said 5 minutes ago, or what I should be doing. My best friend actually jokes that she swears I have early stage Alzheimer's sometimes.

So yeah, I completely get this.
Posted 4/27/2016 2:50 PM (GMT 0)
I posted something like this almost exactly in the RA forum, I almost thought I had posted this! Yes I sympathize with you 100%. I know exactly what you are going through. I don't feel depressed, but I do feel as though my life is limited, and my future is limited. It is extremely frustrating at times because my conditions put me in such a limited position to really be able to do anything. Just curious how old are you? I'm in my late twenties, so the future is scary to me and I'm still trying to decide on a "path." But realistically speaking, what path can I take when you have to be in bed for days straight some times.
Posted 5/5/2016 4:39 AM (GMT 0)
Hey there, I'm replying to this a week or so late. I very much appreciated all of the replies.

StopthePain, I'm 31 years old. I've been through a lot of rough times in the past few years. I was talking to a relative a couple days ago, explaining how stuck I feel lately. I feel like my life crumbled apart, and I'm sifting through the embers. I still have enough determination to get me to the other side, but that wanes when I feel unwell. It's a rough constant up/down as I deal with the pains. -- I had a job offer come up this week out of the blue, but after some consideration there was just no way it made sense at the level of commitment it took. I'm realizing that this is what I have to work around, and I have to make the best of it for better or worse. It's a matter of facing the realities, and not fighting what is happening too strongly. I'm learning to let go of some of the higher ticket career aspirations, or at least admit to myself that I need to be very creative in how I pursue them. -- Do you see any good options for yourself and your "path"?
Posted 5/7/2016 1:06 AM (GMT 0)
I feel for you Thoreau, and can completely relate to the career aspirations thing. I was about half-way through my master's degree when I started getting really sick - I was 29 when I graduated.

I thought to myself, being in debt with half a degree is not worth it, so I just pushed myself to finish. And I am glad I did.

As all my friends at school went on to get jobs, I could barely work more than 10-15 hours per week. So I had to take jobs that were lower than my skill/training level, and only on-call positions or contract positions. It was demoralizing, but at least I was able to work in the field that was my passion.

Medications finally kicked in and I could work 3/4 time. I found a 1/2 time position with benefits and took it, and a year later, I was able to bump up to 30 hours per week.

I ended staying with that company for over a decade, because it would be nearly impossible to find a 3/4-time job in my field with benefits. The company also provided me with disability accommodations over the years which allowed me to keep working as my disease progressed. I was very fortunate in that regard (but I also did a ton of research on disability accommodations and was very well-informed before I even approached my company, so that helped a lot too).

So I ended up working for 18 years after getting my MA, and then last year, had to finally throw in the towel.

It was hard to watch my co-workers progress in their careers and move on to higher salaries and promotions while I stayed stuck, but ultimately, it was better than being out on disability, because my career was a true passion for me.

I took a lot ego blows over the years and it hurt, but now I am glad I pushed myself, and am happy I had a chance to work in a field I loved, even if it was not the ideal for me. I definitely wanted to go much further and higher in my career than I was ultimately able to. My health is the only thing that held me back.

Anyway, I hope you will be able to figure out ways to work toward your career goals in spite of your health - its an arduous process.... but worth it, I think.

One good resource for ideas about accommodations is https://askjan.org/ - they have a lot of info on their site, and a free 1-800 where you can call and speak to someone confidentially about your job situation and they will provide good input.

Post Edited (Candy_Apple) : 5/6/2016 7:10:14 PM (GMT-6)

Posted 5/9/2016 5:14 AM (GMT 0)
Candy, I read your reply a couple days ago and really enjoyed/appreciated it. It sounds like you've been through a lot of challenges in your life. It seems like you're the type of person to keep on trying, which has no doubt helped you along when the going has gotten tough.

In regards to seeing peers moving along to better work situations/salaries, I understand completely. I am always trying my hardest to do my best. This often means I hit a wall of limitation (pain, fatigue, depression), and I pull back then. But, to me it's better than passively admitting defeat, which it seems like you agree.

This may be short -- I'm up past midnight -- but I wanted to respond and let you know I appreciated the response.
Posted 5/10/2016 5:09 AM (GMT 0)
Glad you enjoyed my little biography there!

I just know how hard it is to keep pushing through a job/ trying to have a career, when dealing with serious health problems.

So I admire your efforts.... and in my opinion, you're doing the right thing.

I could have left work many years ago to go on disability... but I chose to keep going because I loved my career. Now that I am out on disability, I am thankful for those years I was working. It was hard, but that builds character, and helps you get through other problems in life, so in my mind, its worth it.

Best wishes to you!
Posted 5/12/2016 7:23 PM (GMT 0)
Candy, when you decided to stop working what was the catalyst that pushed you over the edge in your decision making?

I ask this as a 47 YO with 20+ years of RA. My medications are very limited due to infection risk and I am and have been struggling especially hard for the last 3 months. I am a technology professional so while my job is sedentary and I often work from home I am constantly so sick that sometimes I am out of it more than I am able to function. This was once a great passion for me but I find that I am not performing even 50% these days and am now dealing with bouts of depression and anxiety that in the past were not so hard to shake. I have considered disability over the years but I love to work and be productive when I am able. It is just that those times are short and are becoming fewer and farther between.
Posted 5/12/2016 9:08 PM (GMT 0)
Hey Don -- while we wait to see Candy's response I was just going to ask a couple things. Have you ever tried Turmeric Root Powder? And, have you ever tried eating Gluten-Free?

I have a different health problem called Ulcerative Colitis -- and I know how it feels to have people suggesting things. I just mentioned to try to be collaborative based on some of my experiences. In some ways my disease is like yours -- similar treatments can be used (such as Remicade which I was on at one time). I've found Turmeric Root Powder to be beneficial... it's even been studied in some clinical trial type things I believe. My specialist said it's one of the few supplements actually proven with evidence to help people like me.

I mention the Gluten-Free Diet for two reasons. 1) My in-laws have a neighbor (lady around 40 years old) that has bad arthritis, and eating gluten-free changed her life (for the better). 2) After over a decade of almost continuous suffering without great help from medicines, I went gluten-free and have retained a remission for the past 1.5 years. My last colonoscopy my GI doc said "If I didn't know your case history, I wouldn't know you had Ulcerative Colitis." He's still cautious to attribute it to the diet, but anytime I sneak some gluten I get abdominal pains, and if I stop any sneaking I heal up.

Just my two cents while we wait for her reply. I know how bad it is to want to work and not be able to.
Posted 5/13/2016 4:55 AM (GMT 0)
I was one of the lucky ones to find a job right out of college that I love. I taught middle school science for 11yrs, and loved it. Each year was a bit more difficult, but I loved the job enough, and I was able to push threw it. Unfortunately, my last year I only made it to Oct. I was diagnosed with many of my conditions while I was a little kid. This allowed many of them to progress, and over such a long time, they became to be debilitating. I ended up in the hospital every 6-8 weeks, with one admission lasting a month. This pattern of hospital stays still occurs frequently, and his exhausting both for myself and my son. I had debated and looked into disability, but I was young and figured I still had time. My Dr had always told me that my body would tell me when I should seriously consider leaving teaching, and to focus on having enough energy, and maintain a level of health so I could enjoy my son. I applied in my early 30's and was approved within 4 months. While I was thankful to have been approved, leaving teaching has been horrible. I had been nominated as teacher of the year multiple times, and became the science chair for my side of the county. It killed me to give it up, but my body told me in no uncertain terms that it had had enough, no matter what my heart said.
Posted 5/13/2016 7:47 AM (GMT 0)
I'm a 27 year old male with Crohns and RA, and know exactly what you're feeling. I'm self employed, which helps a lot and takes off a lot of pressure and stress. But I have resigned to the fact that I cannot lead a normal life both in work, and in personal relationships. Unfortunately for us, it's just a fact. You are lucky that you are still able to at least hold down a "normal" job for now and that is something to appreciate. But it's important to try to live in the moment, slow down, take it one day at a time. Appreciate the things you have such as family, friends, and people who care about you. These are the things that keep me going.
Posted 5/13/2016 5:20 PM (GMT 0)
Thoreau; I have tried the gluten free diet. I have been on two elimination diets over the years, the first we didn't find anything that I had any kind of reaction to. This was about 20 years ago. So I went on another one after reading about the Padderson program and I was able to identify that Corn and sugar are two no no's for me. Gluten I have no real reaction to it seems and that is good because corn is in just about everything these days and the combo would make it a real challenge.

I don't eat anything processed. Nothing whatsoever. So we cook a lot and I rarely if ever eat out. I think it probably helps to keep me from having the really bad flares. Plus we save a lot of money that way.

On the Tumeric subject yes, although the ingredient in tumeric that is so beneficial to people with AI disease is Curcumin. The problem with tumeric is that you would have to eat a ton of it to get a beneficial amount of curcumin to help. Now there are some companies who have concentrated curcumin and as well have found a way to bind it so that it has a much higher absorption rate in the body. Without this the average person will only absord about 5-10% of what they take naturally.

The one I am starting to take is a patented form called Curcumin BCM-95. I am planning to take it 3 times daily and possibly more so if I am in a flare. I hope that I react well to it because tumeric did nothing for me on its own but now I know why.

Take care everyone.
Posted 5/13/2016 5:33 PM (GMT 0)
Don, sorry to hear that things haven't worked out even after trying things. That's the way things have mostly gone for me, but I was able to notice a difference with a teaspoon of the turmeric powder three times daily in water -- on an empty stomach (20 mins before or 2 hrs after a meal).

One time I tried the "Specific Carbohydrate Diet" -- and was losing five pounds per week! (I didn't have it to lose.) I know how discouraging it can be. I was just hoping there was maybe something... gotta hope we can help each other out!
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