Am I being a wuss?
March 19, 2011 9:30 AM Subscribe
I've been coming to terms with possibly having a chronic auto-inflammatory and/or auto-immune disease. I've taken time off from work as I was pretty badly debilitated and I've been in and out of doctors appointments and physiotherapy fairly constantly.
YANMD, YANAD, but you might be a patient or someone dealing with a similar situation. My question. How did you know it was the right time to get back to work and how did you assess your stamina and mental energy? Did it result in a wholesale rethinking of your professional life?
Spondyloarthropathy (AS), RA and SLE are the spectrum being assessed. But the doctors are confident enough to get going on treatments. I've been on on moderately high prednisolone, methotrexate and meloxicam for the last month along with some adjunctive stuff. Most of the primary symptoms have lessened but not gone away and I feel pretty darned washed out most of the time.
My friends have uniformly said take as much time as I can. Get healthy and as close to 100% before tucking back into the work world. I'm having a hard time knowing how to deal with this. Whether I'll ever get back to 100% or whether my body is just adjusting to the medications and things will settle out relatively soon.
I've reached out to local support groups and I'm seeing a therapist to help me come to terms with what's happening. But I figure I'd tap into the hive mind for your experiences as well.
Anonymous to keep my health issues out of the public domain for the time being.
Spondyloarthropathy (AS), RA and SLE are the spectrum being assessed. But the doctors are confident enough to get going on treatments. I've been on on moderately high prednisolone, methotrexate and meloxicam for the last month along with some adjunctive stuff. Most of the primary symptoms have lessened but not gone away and I feel pretty darned washed out most of the time.
My friends have uniformly said take as much time as I can. Get healthy and as close to 100% before tucking back into the work world. I'm having a hard time knowing how to deal with this. Whether I'll ever get back to 100% or whether my body is just adjusting to the medications and things will settle out relatively soon.
I've reached out to local support groups and I'm seeing a therapist to help me come to terms with what's happening. But I figure I'd tap into the hive mind for your experiences as well.
Anonymous to keep my health issues out of the public domain for the time being.
I'm sorry you're having a hard time. I also have RA, and something that's helped me is a play-through-the-pain mentality. I know that this is something that's not going to go away, that fucking sucks ass when its bad, but will go away eventually. When I'm having a bad time, I let myself feel really angry, but try to get on with as much as I can get on with.
Find yourself a physiotherapist and a psychologist who deals with chronic illness. It might be worthwhile speaking with an occupational therapist about your work concerns, too.
Exercise has *really* helped me. When I'm in real pain I go swimming, but otherwise I do heavy weights. Of course, YMMV, but do try to find something physical, whether it be yoga, walking, biking, swimming etc to do on a regular basis. It'll help psychologically and it'll also help with your energy levels.
posted by nerdfish at 9:48 AM on March 19, 2011
Find yourself a physiotherapist and a psychologist who deals with chronic illness. It might be worthwhile speaking with an occupational therapist about your work concerns, too.
Exercise has *really* helped me. When I'm in real pain I go swimming, but otherwise I do heavy weights. Of course, YMMV, but do try to find something physical, whether it be yoga, walking, biking, swimming etc to do on a regular basis. It'll help psychologically and it'll also help with your energy levels.
posted by nerdfish at 9:48 AM on March 19, 2011
Oh, and I got some really good advice about exercise when I asked this question.
posted by restless_nomad at 10:16 AM on March 19, 2011
posted by restless_nomad at 10:16 AM on March 19, 2011
While I do not have RA, I do have New Daily Persistant Headache. This is best explained as a non-stop migraine. I've had it treated for a long time and have tried many different drugs, what ultimately made life better for me was acknowledging that I am disabled, but I will not let it totally stop me.
I did make changes to my life, I wanted to go into teaching. With this condition that is not something that I can do, so I changed what I wanted out of life. Believe it or not, I learned to appreciate being able to get out of bed in the morning, take walks, and other types of being active. Just being able to live my life makes me happy. I've met people with my condition that are totally bed ridden and on 100% disability.
It sucks at times to have to deal with the pain and the crazy side effects of some drugs. This is an entire rant on its own. I've been on plenty, Me-Mail me if you want what I think about certain painkillers, immunosuppressants, and other types of drugs.
Lastly, life always finds a way of working out. I'm happily engaged, have a great career, and I really enjoy my life. If you asked me before this started would I be content and enjoy this position, I would have said no. I've reflected on what I wanted from life and changed it to fit me.
You will adapt and make your life enjoyable for you. There are plenty of good doctors that work with these conditions. Find one that works with you and you can develop a rapport with. It makes the process easier and less painful. I guess the biggest lesson I can say is, learn to enjoy the times when you can do things you might find trying at times. The sense of accomplishment is wonderful.
posted by Nackt at 10:29 AM on March 19, 2011
I did make changes to my life, I wanted to go into teaching. With this condition that is not something that I can do, so I changed what I wanted out of life. Believe it or not, I learned to appreciate being able to get out of bed in the morning, take walks, and other types of being active. Just being able to live my life makes me happy. I've met people with my condition that are totally bed ridden and on 100% disability.
It sucks at times to have to deal with the pain and the crazy side effects of some drugs. This is an entire rant on its own. I've been on plenty, Me-Mail me if you want what I think about certain painkillers, immunosuppressants, and other types of drugs.
Lastly, life always finds a way of working out. I'm happily engaged, have a great career, and I really enjoy my life. If you asked me before this started would I be content and enjoy this position, I would have said no. I've reflected on what I wanted from life and changed it to fit me.
You will adapt and make your life enjoyable for you. There are plenty of good doctors that work with these conditions. Find one that works with you and you can develop a rapport with. It makes the process easier and less painful. I guess the biggest lesson I can say is, learn to enjoy the times when you can do things you might find trying at times. The sense of accomplishment is wonderful.
posted by Nackt at 10:29 AM on March 19, 2011
One note on exercise - powerlifting changed my life. Seriously. I walked with a limp before I started doing heavy weights training regularly with a coach. An older woman at my (former) gym has ankylosing spondylitis and now does triple body weight squats. Don't rule out strength training because you have an autoimmune illness; indeed, once you're feeling a bit more well, I'd strongly, strongly encourage you to find a great PT or barbell gym. A good coach will start you off very, very slowly with a painstaking focus on form. I'm a bit of an evangelist about this, so please forgive my tone!
* I just read through the thread restless_nomad linked to, and while that thread is full of great advice, I strenuously disagree with the idea that we arthritics should restrict ourselves to water aerobics.
posted by nerdfish at 11:14 AM on March 19, 2011
* I just read through the thread restless_nomad linked to, and while that thread is full of great advice, I strenuously disagree with the idea that we arthritics should restrict ourselves to water aerobics.
posted by nerdfish at 11:14 AM on March 19, 2011
I am so glad to hear that being full of RAAAAGE when on prednisone wasn't just me. I was raised in a pacifist religion, and I'm a pretty quiet, intellectual guy, but during the year I was on prednisone I struggled to keep my anger in check.
About a year and a half ago I was diagnosed with an auto-immune disease after a near-fatal bleed. I'm still struggling to get my strength up to what it was before I got sick, and it's true that adjusting to the time it takes to recover is one of the more difficult things. The first two months I was receiving treatment I was incapable of doing anything, but by about six months in I could start doing a lot more.
This sort of long-period recovery isn't new. Les Paul, the inventor of the electric guitar, electrocuted himself and took two years to get over it. Sometimes the human body takes a long time to recover from something. Best of luck to you, anon, and hang in there.
posted by The River Ivel at 12:03 PM on March 19, 2011
About a year and a half ago I was diagnosed with an auto-immune disease after a near-fatal bleed. I'm still struggling to get my strength up to what it was before I got sick, and it's true that adjusting to the time it takes to recover is one of the more difficult things. The first two months I was receiving treatment I was incapable of doing anything, but by about six months in I could start doing a lot more.
This sort of long-period recovery isn't new. Les Paul, the inventor of the electric guitar, electrocuted himself and took two years to get over it. Sometimes the human body takes a long time to recover from something. Best of luck to you, anon, and hang in there.
posted by The River Ivel at 12:03 PM on March 19, 2011
I had to stop working >15 years ago due to scleroderma, so I've made a long-term study of how to assess my stamina and manage my energy. It sounds trite, but all you can do is listen to your body. Be careful of all the messages that percolate through our culture, often through well-meaning friends and doctors, to "push the envelope," do a little more, keep trying, don't be a wuss. Nerdfish' response above says "play through the pain"--for some people that's a great strategy, some not. My natural desire to keep going and do more tends to get me in a lot of trouble.
Your body knows what it can do, and it will tell you, but you don't have the luxury of not listening. If something makes you feel worse, stop doing it. Forms and levels of activity that would make a healthy person feel better over time won't necessarily work for you. You have to find your own boundaries.
I've found that I need to consistently do a little less than I think I can. If I guess wrong and do a little more, I pay. And it's like paying back a mafia loan shark--the interest rate is steep, and they'll shoot your kneecaps if you try not to pay.
If you think it's the right time to go back to work, wait just a little bit longer to make sure that your improvement is secure. Then ease back gently, very part time, and stick with that for a little while to see how it goes. Take it slow. That's a hard thing to do in this culture, and it actually takes a LOT of strength, courage, and determination. DO NOT LISTEN to anyone who's inclined to call you a wuss, most especially your own inner critic.
posted by Corvid at 1:01 PM on March 19, 2011 [2 favorites]
Your body knows what it can do, and it will tell you, but you don't have the luxury of not listening. If something makes you feel worse, stop doing it. Forms and levels of activity that would make a healthy person feel better over time won't necessarily work for you. You have to find your own boundaries.
I've found that I need to consistently do a little less than I think I can. If I guess wrong and do a little more, I pay. And it's like paying back a mafia loan shark--the interest rate is steep, and they'll shoot your kneecaps if you try not to pay.
If you think it's the right time to go back to work, wait just a little bit longer to make sure that your improvement is secure. Then ease back gently, very part time, and stick with that for a little while to see how it goes. Take it slow. That's a hard thing to do in this culture, and it actually takes a LOT of strength, courage, and determination. DO NOT LISTEN to anyone who's inclined to call you a wuss, most especially your own inner critic.
posted by Corvid at 1:01 PM on March 19, 2011 [2 favorites]
I've found that I need to consistently do a little less than I think I can. If I guess wrong and do a little more, I pay. And it's like paying back a mafia loan shark--the interest rate is steep, and they'll shoot your kneecaps if you try not to pay.
My symptoms are generally significantly less serious than others are talking about, but I can't agree with this part enough. On the other hand, sometimes it's worth it to 'buy now, pay later' for something you really want, she says on her fourth day of SXSW.
For me, I find that stress is a huge issue, causing flares and other negative effects. I am currently not working because I have the luxury of a supportive spouse, but if I did go back, I'd be looking for a job with less deadline stress than my last (software technical writing, which is heavily deadline-intensive and frequently high-stress, because you're at the end of the line in software development). I liked that work, but I don't think I could handle the deadline stress any more.
One place I wish I had pushed myself harder in early days was exercise. When I exercise regularly, even if it's just walking around town, I'm in better shape and my joints are happier. It's better to build that habit into your life sooner rather than later.
posted by immlass at 1:15 PM on March 19, 2011
My symptoms are generally significantly less serious than others are talking about, but I can't agree with this part enough. On the other hand, sometimes it's worth it to 'buy now, pay later' for something you really want, she says on her fourth day of SXSW.
For me, I find that stress is a huge issue, causing flares and other negative effects. I am currently not working because I have the luxury of a supportive spouse, but if I did go back, I'd be looking for a job with less deadline stress than my last (software technical writing, which is heavily deadline-intensive and frequently high-stress, because you're at the end of the line in software development). I liked that work, but I don't think I could handle the deadline stress any more.
One place I wish I had pushed myself harder in early days was exercise. When I exercise regularly, even if it's just walking around town, I'm in better shape and my joints are happier. It's better to build that habit into your life sooner rather than later.
posted by immlass at 1:15 PM on March 19, 2011
I was diagnosed with AS while in grad school. I seriously considered taking a year off, but I discussed it with my rheumatologist and she said that there was likely nothing particularly to be gained from it and that really doing my best to stay active and functional was most important. I now am pretty confident that I will never get back my old 100%, and I am glad that I didn't take that year off.
As others have said, the number one thing I wish I had done sooner was regular exercise to my ability level at the time. It has been 3 years now since the flare that led to me getting diagnosed, and I'm finally exercising regularly and close to a level of flexibility and endurance that are normal for someone my age. I try to at least go for a walk and do my range of motion stretches every day, and most days I either swim or use a Wii exercise program (as I mentioned in the other linked thread). I so wish I had started doing these things earlier.
At the same time, do not listen to folks who tell you stories about the person with RA who runs marathons or (as above) the person with AS who does serious weight training or even my story as though those are typical or you are being a wuss if you can't do them. The progress of everyone's disease is different. As you come to a diagnosis, it will probably be easier for your rheumatologist and physical therapist to help you figure out what your new normal is going to be.
I definitely agree with what Corvid says above about listening to your body. Some days things I've done thousands of times are just not possible. For me it's a roaring pain in my back and a dull ache in my thighs which tell me I'm done. And that's just how it is. And it does not make me a wuss.
posted by hydropsyche at 3:42 PM on March 19, 2011 [1 favorite]
As others have said, the number one thing I wish I had done sooner was regular exercise to my ability level at the time. It has been 3 years now since the flare that led to me getting diagnosed, and I'm finally exercising regularly and close to a level of flexibility and endurance that are normal for someone my age. I try to at least go for a walk and do my range of motion stretches every day, and most days I either swim or use a Wii exercise program (as I mentioned in the other linked thread). I so wish I had started doing these things earlier.
At the same time, do not listen to folks who tell you stories about the person with RA who runs marathons or (as above) the person with AS who does serious weight training or even my story as though those are typical or you are being a wuss if you can't do them. The progress of everyone's disease is different. As you come to a diagnosis, it will probably be easier for your rheumatologist and physical therapist to help you figure out what your new normal is going to be.
I definitely agree with what Corvid says above about listening to your body. Some days things I've done thousands of times are just not possible. For me it's a roaring pain in my back and a dull ache in my thighs which tell me I'm done. And that's just how it is. And it does not make me a wuss.
posted by hydropsyche at 3:42 PM on March 19, 2011 [1 favorite]
This is a weirdly difficult question for me to answer, because I'm still sorting through some of the same questions. So I apologize if any of this comes off sounding weird: it's still all a bit jumbled in my own head.
But I just wanted to say that if you've only been on medication for a month, I would give yourself some more time before you make any big decisions, career-wise, etc. A lot of RA meds take a while to kick in, so it's possible that how you're feeling right now isn't necessarily your eternal destiny. Also, auto-immune diseases can sort of creep up on you, and so if you've been sick for a while, your sense of what normal feels like may have gotten skewed. I know mine did. It took me about four months on medication to look back and go, 'Holy shit, how did I manage to do that for so long?'
At any rate, if the meds really start working in a couple of months (most RA meds I've been on take 2-3 months to work), you may find yourself feeling better than you thought you could. So I would give yourself time to establish a new baseline and then make decisions from there.
posted by colfax at 4:13 PM on March 19, 2011 [2 favorites]
But I just wanted to say that if you've only been on medication for a month, I would give yourself some more time before you make any big decisions, career-wise, etc. A lot of RA meds take a while to kick in, so it's possible that how you're feeling right now isn't necessarily your eternal destiny. Also, auto-immune diseases can sort of creep up on you, and so if you've been sick for a while, your sense of what normal feels like may have gotten skewed. I know mine did. It took me about four months on medication to look back and go, 'Holy shit, how did I manage to do that for so long?'
At any rate, if the meds really start working in a couple of months (most RA meds I've been on take 2-3 months to work), you may find yourself feeling better than you thought you could. So I would give yourself time to establish a new baseline and then make decisions from there.
posted by colfax at 4:13 PM on March 19, 2011 [2 favorites]
I was diagnosed with RA fairly recently. Initially I was treated with prednisolone, and then switched to something for longer term use. During the first several weeks, I felt really well, and afterwards on the longer term med, I feel reasonably well most of the time. Still much better than before.
The point I'm making is that if you're only a few weeks in, you may feel better than you will feel once meds are adjusted / settled, etc.
Or you may feel better later.
I would say you have to get a feel for how you are, once you're several weeks in.
In my case, I started commuting too soon, thought things were fine, and then found I couldn't quite cope.
posted by blue_wardrobe at 9:09 PM on March 19, 2011
The point I'm making is that if you're only a few weeks in, you may feel better than you will feel once meds are adjusted / settled, etc.
Or you may feel better later.
I would say you have to get a feel for how you are, once you're several weeks in.
In my case, I started commuting too soon, thought things were fine, and then found I couldn't quite cope.
posted by blue_wardrobe at 9:09 PM on March 19, 2011
I was diagnosed with a fairly rare autoimmune disease when I was 20 that turned my life completely upside down. I was out for over a year while the docs tried to figure out a good cocktail of meds. And I mean OUT of everything - work, school...life. I couldn't stay upright for very long, couldn't speak in the mornings because of the pain, couldn't sleep because of the pain and the meds...it was officially no fun. The fact that most of your primary symptoms have responded to your meds is a GREAT sign.
When I finally got back to the point where I could start things one at a time, I found that I developed a new "normal". Nothing felt the same as it had before I got sick, and nothing was as easy. I took things a little (ok, a lot!) slower and allowed myself plenty of downtime. I took it one day at a time and tried to remain grateful to be alive (and still kicking 9 years later). I have realized that my life and my body will never be the same. And you know what? I'm ok with that.
You don't say what type of job you currently have, but I have found that stressful mental situations or a lot of physical work take their toll on me and can trigger flares for me. Your mileage will inevitably vary and you'll have to identify your "new" 100% to be able to figure out your limits. Please hang in there - things will get better!
posted by couchtater at 1:40 AM on March 20, 2011
When I finally got back to the point where I could start things one at a time, I found that I developed a new "normal". Nothing felt the same as it had before I got sick, and nothing was as easy. I took things a little (ok, a lot!) slower and allowed myself plenty of downtime. I took it one day at a time and tried to remain grateful to be alive (and still kicking 9 years later). I have realized that my life and my body will never be the same. And you know what? I'm ok with that.
You don't say what type of job you currently have, but I have found that stressful mental situations or a lot of physical work take their toll on me and can trigger flares for me. Your mileage will inevitably vary and you'll have to identify your "new" 100% to be able to figure out your limits. Please hang in there - things will get better!
posted by couchtater at 1:40 AM on March 20, 2011
I also forgot to add that the meds actually made me feel worse as time went on and the side effects began to take their toll. I don't mean to be all doom and gloom by saying this - just another reason to give yourself a little more time when thinking about any "back to real world" dates. Good luck!
posted by couchtater at 1:46 AM on March 20, 2011
posted by couchtater at 1:46 AM on March 20, 2011
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High-dose prednisone also makes me pretty crazy, particularly right at first. That part does settle down for me and I don't feel quite so much like trying to find a service that will bring a bar fight to my bedside.
Between those things I'd definitely resign myself to taking some time - you don't say how long it has been so far, but my issues seem to linger for about 6 weeks past when I start treating them effectively. (That being said, I've had two serious flares in three years, and I feel like I've got a pretty good handle on them these days. Feel free to memail me if you want to talk details - I could definitely point you at some resources.)
posted by restless_nomad at 9:41 AM on March 19, 2011