I would appreciate any feedback from those of you who have been in this situation. Currently, I work part-time as a Behavioral Specialists- anywhere from 2-10hrs/week. I also teach yoga 2 mornings per week. I also fill the "monumental" homemaker role- Preparing fresh meals, cleaning, housekeeping, pet care, home improvements, gardening, etc. And yet still I seem to have some time to rest during the day.
For the past 8 years, I have been dealing with fatigue, back pain, joint pain, constipation, depression, probably forgetting a few. I have been seeing specialists like it's my job (tests, tests, tests), This past year, I had a positive ANA, leading me to a RH. There, they played detective and found Sjogren's through a positive lip biopsy. Though, my main complaint was NOT dryness, but an overall ILL feeling. (no one, but my mother, seems to understand how bad it affects me).
I am a fighter and have been my entire life. I have been able to fight through pain, fatigue, weakness, and any other trial (which I have experience quite a few). Stress is probably some of the reason for my autoimmune conditions. These past 2 years, my life has drastically slowed down. Having to cut things and people out of my life...feeling like a shut in, because of symptoms.
So, my question is: have you ever doubted yourselves that it is all in your head? I want so badly to be a financial contributor to our household. It would NOT be extremely difficult for me to get a job based on my qualifications. However, due to my health, I have constant ups and downs. I can't make more than 1 or 2 appointments in a day, because I don't know how I am going to feel. When I push through the fatigue and other symptoms, my body stops functioning leading to constipation, joint pain, swelling, moodiness, fatigue, etc. I keep trying different ways, but each time, I come up with disappointment in my lack of control and inability to physically do things (which very few understand).
Hopefully some of you speak my language.
Advocate of clean (paleo) eating, tried plaquenil for 6 months, celexa for "mind fatigue", prednisone is amazing...only took it as part of finding out diagnosis.
"If I can only walk to the end of the driveway and back, it's better than nothing"
Rachel
I like your attitude!
I also understand the 'not knowing how much energy I will have' feeling. It's a tough one. I've been diagnosed maybe 6 years, and was going downhill for two or three of those. The pain was awful. However, I started Plaquenil (just 200 mgs daily) about 2 1/2 years ago, and reduced my working hours about 18 months ago (now 28.5 a week) and I'm managing. However, I'm 55 amd don't have young children at home. I've also started paying for someone to do the heavy cleaning once a week, so that helps.
Generally, my life is manageable most days.
Hugs
Kathyx
I get it. I pushed through all of my stuff to the point I ended up sicker. I finally saw a great rheumatologist who said I wasn't doing myself any good by ignoring or pushing myself. I quit my job; simplified my life; applied for disability and after a couple of years started feeling better. I pace myself and if I know I have something planned I need to do I cut back a day or so prior so I can be ready. You are stol contributing to the household if you are doing household tasks. Financially I contribute my Soc security disability check plus it covers my health insurance and a portion of my RX. I take vitamins and supplements (multi ; omega 3; D3;potassium ;plaquenil; butrans patch-for pain round the clock;restasis ; pilocarpine drops for a mouth swish; clean diet plus gluten free.)
If you are still feeling pretty bad, then work with your doctor to find some other medications that may help. It sounds like you are already doing the "lifestyle" things (eating well, supplements, etc).
Do check your Vitamin D and B12 levels - sometimes supplementing those at a VERY high level helps with energy.
I also felt AMAZING on prednisone - holy cow, if they could make that stuff with no side effects I would be SUPERWOMAN! :o - but obviously as it is, it's not a good long-term solution.
For a number of reasons (which I won't take the time to explain right now) I ended up on Methotrexate - VERY RELUCTANTLY - but I have to say, it's been AMAZING. I have few side effects, and it's ABSOLUTELY worth the trade-off (so far) - I am back up to probably 85-95% of my "old normal". I know I may not be able to take it forever, but WOW has it made a difference in the last year!!!!
In any case, let your doc know how you are feeling, and talk to him/her about maybe trying some other medications to see if you can get more relief.
And in the meantime, don't feel bad - part of your job as a human being - ESPECIALLY as a mom - is to take care of yourself!
I think if i wasn't currently working( I have a 30 work week I can schedule myself) I wouldn't be looking- if that makes sense.
I do SO understand your feelings of not knowing how to plan- and that pushing only makes everything worse. I wish bloodtests would somehow miraculously show this portion of the disease!
Tasks of daily living , which i can just devote myself to on days off keep me busy enough, and I can rest when needed. If its a good day- I can accomplish a lot-to help balance out the days I can't get much done.
We have 6 children- but two are out on their own now and all the rest are teens. No small ones anymore who don't understand when Mom has had a long day at work and doesn't feel up to making dinner. They are stepping up to the task.
I am not sure how long I will be able to work off the farm- we certainly need my income with one in college and two to start in the next year.After we get that post secondary schooling out of the way ,( if i last that long), I will either cut my hours back drastically or step back entirely.
if finances aren't part of the equation for you- I wouldn't let societal expectations be your motivation.sounds like your work schedule is perfect for someone with variable energy
Thank you everyone. It is nice feeling to have people who truly understand. Yes, I am obviously new to this site.
On the mom note: Thankfully, we can choose right now, and this is not happening with young children at home. I am in admiration of you momma's out there. I have always had caretaking, love, passion, and protection in my heart. This is the one of the pressing subjects. We have been recently discussing children (I am 29 & Husband is 34). Ha, that's the thing, I feel like if I were pregnant, that's all I could do. And if I became a mother of an infant, I can't plan to be healthy. Growing up with a sick mother has made me happily who I am; however I would not knowingly want to subject a child to repeat this cycle. Open to adoption, I still can't promise that I wouldn't run myself into the boneyard by attempting the 24/7 task of being a momma.
About the Methotrexate, my RH prescribed it for me in November 2012, after the Plaquenil trial. I am not confident in taking it with all of the possible side effects.
Will check about my B12 and D.
You described the quintessential Sjs dilemma. It does make one feel crazy!
On the relatively good days, I can drive myself nuts wondering if I am just being neurotic about low energy, etc.
Yet I know my overall stamina is better if I allow myself to take breaks to recharge. I know that if I take better care of myself, eating more healthfully, resting when I need to, I am more productive than if I push myself to Be Productive. Some days I just live in denial that I cannot control physical symptoms.
A lot of my energy goes to food prep, as I prefer organic, unprocessed foods, similar to Paleo. Two adult sons are at home right now. Those guys sure can eat! Less energy or interest goes to creating a neat and tidy home. In some ways, I feel fortunate that I was not diagnosed before my kids were born, because I would have felt too overwhelmed to have kids. ;D There was no internet in my life 25 years ago, so I had know idea what was ahead for me.
I agree with cargillwitch that if I were not already gainfully employed, it would be difficult to begin a new job. I am fortunate to work only during the school year. I will retire in a couple of years after the youngest kid finishes his schooling.
I have been contemplating teaching an on-line course for a local university, but I worry that I will not have the energy to keep up. It could be a good supplemental income when I retire. I wish I could retire now, but we all need the medical insurance my job provides.
I agree about walking to the end of the driveway!
Quote from: racheld724 on January 09, 2013, 11:52:36 AMI am a fighter and have been my entire life. I have been able to fight through pain, fatigue, weakness, and any other trial (which I have experience quite a few). Stress is probably some of the reason for my autoimmune conditions. These past 2 years, my life has drastically slowed down. Having to cut things and people out of my life...feeling like a shut in, because of symptoms.
So, my question is: have you ever doubted yourselves that it is all in your head?
I've thought of that a lot lately: Is it all in my head? Mainly, but not just because, my working ability is being evaluated by the institute of occupational health (or whatever it is in English...). My doctor put me on sick leave in November and it'll continue at least until the evaluation is done. The process itself seems to be concentrating on "twothe insides" of my head. The last visit was with an occupational psychologist who said that after receiving my files she thought "what is a person like this coming here for?". Sigh. Next two visits are with a psychiatrist. So they too think it's all in my head...
Well, maybe it is. I've been popping depression meds in several occasions, this time two-three years without a pause. But I don't think I'm depressed. The docs seem to think I'm living in denial on that one...
In my head or not, my life, too, has slowed down. I don't make any commitments, not even in the near future, because I can't know if I'm up to them when the time comes (usually I'm not). I don't commit to any regular activities. My life is pretty much nothing else but home and taking care of my horse - which also seems too much for me. My family (hubster and girls 12 and 16) don't understand either. But then again, I haven't even tried to explain it to them. Somehow I'm feeling ashamed of this - maybe also because I'm doubting it even myself.
Eija
It sounds like things are really tough for you just now. I wonder if you are being too hard on yourself? Just because the occupational health people don't understand Sjogren's, doesn't mean that it's all in your head. They just need educating.
Joe always recommends the spoon theory. Could you print a couple of copies out, and give one to the psychiatrist at the beginning of your visit, and one to your family to read? If you can't speak to your girls and hubster about how you feel, maybe a little note to each of them, explaining how you feel, and using the spoons as an example would help? It's worth considering.
Also, taking antidepressants is not a weakness - it can be an essential, when you have a chemical imbalance, which many of us have. I don't see my amitriptyline as being any different from the inhalers I use for my asthma. I need them both, irrespective of the reason why.
It's hard to open up about how chronic illness affects you, but if you can muster the energy, you will be doing yourself, and your family, a favour. If they don't understand you, they can't help you
God bless.
Kathyx
Hi Eija, know that you are among friends :)
The title of a research paper I scanned was "Sjogren's: The Orphan Rheumatic Disease" and that kind of says it all. Makes for feeling more than frustrated, as patients, when docs, family and friends treat us as orphans, too. But this is what we "have" and surely we can keep up each other's spirits, and in doing so maybe keeping UP our own.
Rachel, sorry, I seem to have hi-jacked your thread. Didn't mean to...
Kathy, I've been meaning to translate the spoon theory into Finnish but as so many things these days, it still hasn't happened...
Today was my first meeting with the psychiatrist and I hated every minute of it. No, I didn't take the spoon theory with me. And not once was Sjögren's mentioned. Not once. We did talk about possible ADHD and he blabbed some politician-sounding mumbling - I couldn't decide if it meant a possible "yes" or a "don't be ridiculous". Going to meet him next Weds again - already feel like throwing up just for the thought of it ::)
When it comes to taking antidepressant, I don't have a problem there. I too think there are situations when they're needed just like aspirin. I started Cymbalta originally for anxiety symptoms and it did help for that. And now I keep popping them because I'm wondering what my pains would be without it since it's said to help the pains, too. But depressed? I can't make myself sign that. Well, once again I'm filling in a depression questionnaire for next week's appointment...
The thing is, before talking to others about my illness I need to make it clear to myself if I'm really fatiqued and with brain fog or just plain lazy. And that is surprisingly difficult!
Marybee I tried to google that research you mentioned but couldn't find it :( Is it in the net somewhere?
I totally get it!
I am self employed, just started two new bussinesses and then this stupid disease popped up.
I have tried and tried to just push through and ends up paying the price every time. I have finally acknowledged that now. So now what? Well trying to figure that out... It sucks! There's so much I want to do and so little energy to do it
Lousy day.
I didn't feel like going to church with hubby and he didn't like it - well, he never likes it. I told him that I'm aching all over and he said "it's all as easy to sit there as at home". Just that it isn't :( It's my job to use the sound system while there, and also everyone expects me to play my flute. And if I don't I get a zillion questions "why?" and "at least come and sing with the choir!". Plus the church coffee afterwards - it's hubster's social highlight of the week whereas I'd rather come home straight after the service.
Yeah, my shoulders and arms are aching and feel powerless and my head has been not really aching but in sort of pain the whole week (if not longer). I should be filling another depression sheet for the shrink on Weds as well as list the major happenings/incidents in my life since 2000. Belch. I don't even remember simple words, how can they expect me to remember years and dates - not to mention happenings I'm eager to forget?
Plus the girl who's been renting my horse twice a week (thus helping me with the upkeep) just sent a message that she quits.
Sorry about the outpouring, but I needed to vent... :-[
I was already on disability for major depression when I got diagnosed. I've had bouts of it since I was a kid, but I also had the sore joints for 13 years before I was diagnosed, which leaves me not knowing whether the fatigue that made me stop working was physical or mental. I'll never know. Depression always felt like physical fatigue to me, even though I never doubted that it was psychological. Sometimes I wonder if everyone suffering from depression should be tested for autoimmunity.
I'm alone so I don't have to feel guilty at letting anyone down when I'm sick, but I do still feel guilty - for being on disability, for wallowing in being sick, even for what I might have done to cause my illness. And since when you're depressed the best thing you can do is push yourself to be active, it's a genuine dilemma whether to rest or make myself get up and do something. But that's just the way it is. Fatigue IS subjective and can always be psychological, AND I have a real illness. I just try my best to feel what my body really needs.
These disorders present with such unpredictability, it's ridiculous. If I do plan something - it's a long shot. Sometimes people just don't understand because "you look so good!"
Sometimes I can deal with it, but there are times in which I have difficulty dealing with it. I want so much for my life to be like it used to be - but it's not.
Sunday, Monday and today, I have not felt good at all. I've had more pain than usual. The first two days I spent in bed all day. This morning I thought this was going to be the day I felt much better. That was short-lived, so I am just taking it easy.
I must frequently remind myself of the Spoon Theory. Heck, I might have to borrow some of next week's spoons -- Oops, that's not good either. Oh, well!
Duchess
The meeting with the shrink was today. Oh my he really was not my kind of guy :o
Also, he really didn't understand anything about sjs - but somehow it was good anyway. He was determined that my symptoms are depression, not sjs (even the pain and the dryness!). He explained that depression shows itself via many different symptoms - and it can very well be there even though my mood isn't depressed. And that it is totally appropriate and recommendable that I'm on sick leave because the level of my condition.
Ok, so I take that and quit feeling guilty about my sick leave.. BUT... if I have depression without depressed mood - doesn't that equal an atypical depression? And here http://neuro.psychiatryonline.org/article.aspx?articleid=100237 (http://neuro.psychiatryonline.org/article.aspx?articleid=100237) they say it might be because of CNS-SS - especially since I have positive ANA, SS-A and SS-B. And if that is the case I should be treated with steroids instead of antidepressants and quickly, too, to avoid permanent damage!
Yep, I feel alone in this, totally alone. Just hoping that a SJS-expert would fall from the sky at my feet... Just wondering what they talked at their meeting about my issues in the afternoon - this shrink, a psychologist, my own gp and a general dr of occupational healt. Maybe my gp will call me tomorrow. :-\