I feel like my quality of life is questionable to nil. This disease has progressed very rapidly in my body and it’s getting depressing. Today was the first day I have gone out of the house in at least a week. We went to church and were going to do some family stuff together, but I had to be taken home because I was so exhausted just from going to church for an hour. I hate living like this. Does anyone feel this way?
At times, I definitely feel this way. I have come here a few times for help and to get support, as my SS as well as other things were acting up and I found myself seated in a chair with a heating pad for days at a time, more than once. I know that autoimmune problems in general have clearly altered my life.
It sounds corny, but eating correctly and getting enough sleep, does provide some help. (See diet thread) Also, learning to cope well with stress. These things are not as easy as they sound.
Just learning to cope with the changes the illness brings to our life is tough, but it’s do-able. I’m struggling to accept it all and trying very hard to concentrate on the positives in my life, weird thing is if I do have some good days, how odd that others forget my super bad days and wonder why I’m not working etc. (just had that happen to me). BUT finally, I just don’t care. I have learned the hard way how precious good health and life is and I am doing what it takes to take top notch care of myself to have more of those kind of healthy days.
If you don’t have one already, make sure you have a caring, intelligent, informed, caring doctor working with you. And cherish any good, close friends who understand your burdens. If need be, consider short term counseling. Having health problems is no picnic.
You are in good hands here. (Hugs)
hi…. I can say that for me, I have definitely felt that way- physically and mentally. I think Nomand was right on the button with all of it. You do the best you can, make your health paramount to hold off the bad spells as much as you can, and finally, sadly, accept that others may never truly understand. Heaven knows I don't always understand what's going on and I have to live in this body. If i remember that, I have a kinder, more patient feeling towards others when they are at the point that I would be upset with them.
Stress, anxiety and depression can all affect the body too so just like avoiding sugar, you may want to talk to someone to manage them.…they will cause problems if not properly regulated.
Sending hugs and please keep in touch. We are here for each other.
Dear Holly,
I'm sorry you're struggling right now. Exhaustion at it's worst, hits me in waves too, just like pain cycles. Sometimes I can trace it to weather, or stress, over doing it, and then sometimes there is no known reason what so ever.
I think the exhaustion was at it's very worst when I was still taking Enbrel and having recurrent infections, I guess I'm just one of the few who cannot tolerate the biologics, and there is no adjusting the dose on those, you either take it at a set dosage, or you don't take it. At least this was what I was led to believe.
Not leaving the house is a tough one, it's very difficult for me to ride in the car, so it is rare that I am away from home, and even then I cannot ride for long, and it's a drag, believe me. It works on your head after a while, especially not living near anything, meaning there is no place within walking distance.
I hope that you can speak to your Doctor, and get to a better place soon, I hope we all can.
Please take good care, was good to hear from you!
Wishing you well,
SK
Thanks to all of you that replied to my discussion. When you are in the midst of such a bad “flare” you think that your life will be miserable forever and you forget how it feels to be even halfway “normal”. It’s so nice to have a community like this that can really and truly understand what we are going through.
Gentle hugs to you all
I have a question.
Everyone keeps telling me to pace myself so I don't have a flare after a good day.
Does anybody have any clues as to how to do this to avoid flares?
Nope! I find that when I feel good I can't pace myslf because I try to get so much done while I am feeling well. I began taking Celebrex and it has done wonders for me. I have been on about a 4 week stretch of feeling great, other than developing a "mouth flare" about a week ago. (Yeah, I know, I make up my own terminology...mostly because I can't remember the proper terms. But I have a sneaking suspicion that everyone knows what I'm talking about!) Then I got up yesterday with aching hips, slept like crap last night and got up so lethargic today I feel like I'd run a marathon. Nah, make that a triathlon.
I got so much accomplished while I felt good. My sister helped me clean and sort out various piles that accumulate when I don't feel well. It felt so good to have those things done. I got a new car (my first since my horrible accident 2 years ago) and I have a sense of freedom that I haven't felt in, well, 2 years!
So I got cocky.
No, I don't think this is a pay back for my cockiness. And yet, it is because I haven't learned to pace myself. Then I find myself bummed out and thinking, "Here we go again. Why didn't I pace myself???". It seems that even with meds that work, break-through flares still happen but I apparently keep forgetting about that.
Awww geez. I haven't answered your question whatsoever. I guess, just know that with this disease and its unpredictability, for any of us to have figured out a way to pace ourselves is highly unlikely. And if I'm wrong, would somebody PLEASE tell me HOW TO PACE MYSELF???!!!
Well, that helped a lot, thank you so much.
I would love to be able to give some invaluable advice because I was diagnosed with Sjogren's 20 years ago, but I have always been able to cope and keep going until the last year. I feel like I never get anything done and I'm just living in constant fatigue. I have learned that when I don't feel like doing anything which is most of the time that I do things to enjoy myself as much as I can. I put my feet in my foot bath or soak in Epsom Salts, read a book. That's the only way I know to survive the fatigue. I had a wreck in November when a lady turned in front of oncoming traffic and my car was totaled and my back fractured in 4 places, airbag chemicals burned my hand and the airbag messed up my hand and I feel like I will never recover. I'm still going to try to do things I like to do so I can look forward to something.
Pebbles, that sounds dreadful and extra hard for us with autoimmune illness. It’s gonna take TIME to recuperate from something so major. Lots of rest, TLC and support. Love your idea about the Epsom salt foot bath and reading a good book. So sorry to read of your accident. Wishing you well.
Hi Pebbles
It seems like we are living parallel lives. I crushed (not broken, crushed) my finger and the side the of my hand and have to wear a cast for a long time and my finger will never be the same. My Sjogren’s went from 0-60 in only a few months and I am so miserable most of the time. I didn’t know how bad this could be. Thanks for the support, it’s nice to talk with people who understand.
I'm currently in the same boat. I'm not sure just what it was that escalated everything, but it's very difficult to function lately. It's one of those times I go from couch to bed to chair, and sleep, sleep, sleep! Being able to sleep is wonderful, let me tell you as sometimes it's quite elusive.
Seems like just one event can change everything, we just never realize how breakable we are, until we break! Best thing we can do is listen to our bodies, talk to our Doctors and try to get to a better place by listening to our bodies at the time!
Your personal standards will certainly slip during these times, and you have to learn to just adopt a more Bohemian attitude. I once asked an artist friend of mine to give me HIS version of Bohemian. He replied "the place is a mess, so what, the dishes need washed, big deal, I keep the dog and I fed and focus on my art when the time is right. It's about only focusing on the thing that really matters..."
Sending my personal best to all,
SK
That was sooooo smart, SK! I know when I feel well I over do. And I have times when I have to rest, that I am bitter. My husband is 8 years older than myself and often has more energy. I think to myself at times that this just sxcks. How OLD is this disease making me? BUT your analogy was a good one!!! Must CHILL! So sorry to hear you are really feeling yuck at this time, SK…and Hollydoodle too! Our son says when I’m sick that I need to “chill-lax” and it always makes me smile. Let’s get Bohemian (as/when needed)!
Thanks Nomad. I never understood how Sjogren's could continue to get more and more dehabilitating because I have known people that basically had dry mouth and dry eyes and that was it. Unfortunately, some of us are not so lucky! My daughter bought me a massaging/heated footbath. I spend a lot of time with it. :-)
Nomad said:
Pebbles, that sounds dreadful and extra hard for us with autoimmune illness. It's gonna take TIME to recuperate from something so major. Lots of rest, TLC and support. Love your idea about the Epsom salt foot bath and reading a good book. So sorry to read of your accident. Wishing you well.
Hollydoodle, sorry about your hand. My hand is messed up forever. The docs say they've done all they can. It is so minor compared to the fatigue and body aches from Sjogren's. I am determined to still live a life I enjoy. Venus Williams talked about her fatigue and I wonder if she has the same kind of fatigue I do because playing tennis is not something I could be doing. However, I aired up my bicycle's tires today and rode in front of the house for a few minutes and yes, I am hurting now but am going to do a few minutes everyday. We can't let the disease beat us! We have to find a way to enjoy life.
Hollydoodle said:
Hi Pebbles
It seems like we are living parallel lives. I crushed (not broken, crushed) my finger and the side the of my hand and have to wear a cast for a long time and my finger will never be the same. My Sjogren's went from 0-60 in only a few months and I am so miserable most of the time. I didn't know how bad this could be. Thanks for the support, it's nice to talk with people who understand.
That is wonderful that you go out and ride your bike for a few. When I am going through a really bad flare I can barely go to the bathroom after getting out of the bed. I’m like some of the others who say they get as much done as possible when they feel better than usual because we know it is short lived. I sometimes regret going all out and doing too many things but I want to try and be as “normal” as possible and try to be a good example for my kids. I still work part time (not right now because of my injury) and my husband wants me to quit, but I feel that would be the last nail in the coffin for me…meaning giving up trying to have a normal life.
SK… been wondering how you are. We missed you Sunday. I really like your Bohemian Bud's philosophy. I think we do it out of sheer necessity but its nice to have a relaxed view of it.
I am sorry to hear that so many of us are suffering right now. Life does throw us curve balls but no matter what it is, I think having an AI makes recovery harder and longer. I am finding myself slipping back into the world of fatigue, which is disappointing as I thought the Plaquenil was finally taking hold. I had been doing much better with that, but here it is again. I had people reminding me this weekend that I had said I would be around more this summer, yet its over and I have hardly been around. Hard to explain without sounding like a drama queen. O'well…..I too overdo it when I am feeling good but I almost have to. I feel like I have to grab that piece of the "old me" when its here.
I agree EnjoyLife,
Grab the good while it's there, even if you wanted more, be glad for what you can get, and by all means be the Bohemian when you need to! ha!
I'm feeling a little better today! My granddaughter came and did the floors for me today, so that was super helpful, and I was able to spend a bit of time with her little ones! They never fail to make me laugh!
Yes, tennis is out for me too! Always was!
Hollydoodle said:
That is wonderful that you go out and ride your bike for a few. When I am going through a really bad flare I can barely go to the bathroom after getting out of the bed. I'm like some of the others who say they get as much done as possible when they feel better than usual because we know it is short lived. I sometimes regret going all out and doing too many things but I want to try and be as "normal" as possible and try to be a good example for my kids. I still work part time (not right now because of my injury) and my husband wants me to quit, but I feel that would be the last nail in the coffin for me...meaning giving up trying to have a normal life.
I am going to agree with you. I quit teaching in July of 2013 and now know I need to do something that makes me feel useful and gives me a reason to get out of bed. If you can work part-time, it may be better to continue working if you can.
Pebbles said:
Hollydoodle said:That is wonderful that you go out and ride your bike for a few. When I am going through a really bad flare I can barely go to the bathroom after getting out of the bed. I'm like some of the others who say they get as much done as possible when they feel better than usual because we know it is short lived. I sometimes regret going all out and doing too many things but I want to try and be as "normal" as possible and try to be a good example for my kids. I still work part time (not right now because of my injury) and my husband wants me to quit, but I feel that would be the last nail in the coffin for me...meaning giving up trying to have a normal life.