My friends,
I suppose this is the nature of "this beast."
I feel blessed that I am feeling better overall in the last months. Lately it seems that I can feel fairly energetic (and have a rather low level of pain) for a couple of days, and then really be hit hard with even more painful joints than ever before.
It seemed every joint screamed at me all weekend. And what surprised me is that I was back in a depressed mood. I thought I was coping better than this, but it just seemed to "wear me down."
I know this pain doesn't last forever, that I will feel better, but in the height of it everything seemed so bleak.
Maybe I expect more from myself...guess I just needed to vent a little. I know we all deal with this sort of thing, so thanks for listening. I appreciate you all! ;)
Being endlessly sick ... all the time .. with no end ever coming ....
OF COURSE we are going to feel bad for ourselves.
It's natural. It's expected. We'd be robots if we didn't.
Honestly .. the folks who continually are positive while feeling like this ...
I think there is something wrong with them .. must be aliens or something...
zombies ... ;D I'm human and being sick without an end in site .. that's TIRESOME.
Hi Meld,
Oh I sure do know what you mean! The pain is never ending and like Liz mentioned, it will wear the tar out of you.
Sending you some very gentle
( ( ( H U G S ) ) )
my friend and hope that the pain ends soon for you.
Take extra special care of yourself -
Patze
Liz,
You're right, and it helps. I usually can be positive, but some days are just hard. Tiresome is a good way to put it.
I gotta expect these days that I'm worn down, and just go with the flow. ;)
Thank you.
Patze,
I know you can relate, like most all of us. I really appreciate the "hugs."
I'm going to pile up under a heated blanket and look forward to my baby girl coming to visit tomorrow. That will help!
Melinda - I understand completely. I think the pain is what causes my constant fatigue. My pain meds help some, but I can't take them 24/7. I actually feel guilty that I am depressed even on Zoloft.
I am sorry for the pain flares you are having. There are so many good people here who really "get it." Literally and figuratively....
Soft, gentle hugs,
KellyG
We all need hugs and a shoulder to lean our heads on. Having a chronic illness is hard to deal with.
I get really frustrated and angry at times. That's when I have to ask for my hugs. I talk to our heavenly Father a lot and that consoles me. For the asking, He will send us some earthly beings ( such as this forum) to help us with our dismay.
HUGS, HUGS,& More HUGS
Think of it as honouring how your body feels. When you can deal better, you will, right.
Major, big hugs.
HUG!
You're absolutely normal in feeling down sometimes - it is mighty strange when people who deal with physical discomfort or pain claim to be upbeat and positive all the time, with never a shadow of self-pity or why-me-thinking darkening their every sunny day.
I go through cycles of positive and negative thoughts, feeling blessed and cursed, self-pitying and content. All in the same day!
How does the Serenity Prayer go?
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.
We need a Sjogren's Serenity Prayer! Let's try to think of wording. Wisdom to know when to stop what I'm doing, not do that "just one thing more" that pushes me over the edge and just LIE DOWN for a while would figure in mine. Might have to work on the wording.
God, grant me the serenity to accept I can't do it all anymore,
Courage to set my own priorities in the face of societal and family pressure,
And wisdom to know when to stop before I collapse.
with love,
Suzie
"It's my party, I can cry if I want to, cry if I want, cry if I want to!
You would cry too if it happened to you!"
Yep, I'm trying to learn how to float with the depression that pain brings, how to stop fighting it so hard, without getting swamped.
I find that the work of fighting the depression is as exhausting as the depression.
But of course I fear the depression, cause I don't want to get stuck there, either.
If I try to sort of float with it, acknowledge it, feel it, it lifts on its own at pretty much the same pace as if I fight it.
The thing about pain, tho', is it just is so endless.
oh well
I hope you're on the upswing by now, Melinda.
For me I just forget that the up part is only PART of the cycle, which is bound to turn down again...........
I guess we're not really made to accept this stuff, as human beings. So of course it's hard.
Hugs
Elaine
I totally hear ya. Hope you feel back on your upswing soon!
Oh yeah. Vent on!
I think I have had Sjs for 20+ years. I was Dx'd about 5 years ago.
I feel myself getting weaker each year. Yet, each day I get up expecting to have a good day and seem surprised when I don't. Then I feel sad.
How silly is that? I guess I should thank the brain fog!
I am still in denial that I won't heal from this ailment. If I could manage it, I would consider helminths, just to be done with the pain and fatigue.
I just want to be done with it! "Tiresome" is the perfect summary.
love to you all,
beth
I hear what you are saying - There are times when I think I'm the saddest, grumpiest stick in the mud. When I mutter this at my partner, he very kindly reminds me that I'm in a lot of pain, and haven't had enough energy to do (whatever it was that day - like carry my plate to the table). Thank goodness he mirrors that back to me, or it would be really be easy to think that the bad part will always be there.
But I have some good days too, and when I do, I realize that the "down" part is more about the pain than who I truly am.
Best!
I am feeling a bit better tonight, thank you all!
Everyone's understanding and encouragment helps more than you can ever know. ;)
Thanks for the song, Elaine. It made me smile; that's just what I've felt like the last week. I hate feeling so down when I'm in pain! I know it's normal and to be expected and I still hate it.
On occasion, I just need to give in and do what I feel like is "wallow" in it. I succumb to self-pity, and I don't like it, but as said, we're human. Sometimes it just can't be helped. I just need to "stop, drop and (whine)" and wait for it to subside.
And Suzie, That's a great Sjogren's Prayer.
I feel so lucky I can come here and vent and whine, and be honest about things and receive so much love and caring. It means so much...
Tomorrow we have our dear daughter coming to visit for a long weekend. She's pregnant, gets tired easily and has had horrible morning sickness. If needed, she and I can pile up on the couch together, and we'll still enjoy our time together. :D 8)
Blessings to you all,
Melinda
I think having a pity party is completely normal and I too like to throw myself a pity party as well ;)
Having an illness is a difficult emotional roller coaster not to mention the physical pain that we go through. I know exactly how you feel!
I hope that you have a wonderful weekend with your daughter!!
Well, a pity party of my own, today. The song "I'll cry if I want to," is okay. I get it.
The only problem is, I don't cry, and apparently can't cry unless I use Lacriserts, a capsule of tears that's inserted in the eye, and unless I insert the Lacriserts correctly. I just don't have the tears! How do I cry about not crying?
Sorry, not very positive right now.
Soycoffee
Meld
Sending you another big hug. I know how you feel. I've had a 'duvet day' today, which I can now that I work just 4 days. Just hoping to feel more human tomorrow, as I have a couple of commitments.
Sounds like the hugs with your daugher could be a comfort for you both. enjoy!
God bless.
Kathyx
YYC_Mommy,
Thank you; seeing my daughter is awesome.
soycoffee and Katy,
I sure hope you both feel better by tomorrow. Kathybarstool, now that you have that mid-week break *Kathy-Day* it doesn't seem fair to spend it in bed, does it?
soy,
I appreciate your post; we can't be positive every day. Just seems to be the way it is for us. Some days we just gotta hang in there and hope for a better day.
I'll send you both BIG HUGS and hope we all will be much better soon!
meld, I am sorry that you are feeling down in the dumps, but I understand and don't blame you one bit. Pain is like water torture---just a constant agony that can very in intensity but just keeps on in the same place and is relentless.
Also, it is getting time for the holidays and that always seems to bring some depression to a good many. Those of us with autoimmune are probably more prone. Just having lack of energy, lack of socialization like we did in years past and feeling "yukky" in general are reason enough to be depressed.
I am finding it increasingly hard to enjoy the holidays as I don't have the energy for the tree and baking and all that goes with Christmas. The stress is too great and the gratification is not what it used to be. Then with the kids out of the house is seems to lose some of its oomph.
It is always great when the kids come home and I am glad that your daughter got home and hope she is feeling better. Morning sickness can be bloody awful. Remind your daughter that in a matter of months to small number of years she will forget a lot of the misery of pregnancy.
Hope you get on the upswing but don't punish yourself if you don't cause that is the nature of the beast. Thankfully we don't usually stay on one plateau and sort of move around on the emotional rollar coaster we are on. That is one thing to give us hope as tomorrow this may change. Take care and rest when you need to, cry when you want to and we will still love ya. Irish ;D
Meld, I hope you're having a happy day today and was so glad to hear that the time you spent with your daughter was so very very nice. But we all get those down days, its part of life and certainly part of chronic illness. For myself, when I'm down, I always think of tomorrow with hope when I'm hurting as perhaps that's going to be a better day.
The words to that song sung by Orphan Annie, "The Sun will come out tomorrow, bet your bottom dollar that tomorrow there'll be sun. Tomorrow, tomorrow, I love ya tomorrow, you're only a day away" often helps me alot. Not to mention the occasional dip into a usually forbidden snack, like a few chocolate almonds or a small nibble of jelly belly jellybeans, seems to do the trick to smooth away a brow furrowed with stress from hitting life bumps in the road too repeatedly.
Today, is a good day for me though, I can't walk very well at present as I've been having some RA issues, still fighting NHL cancer as well, and have all of the usual Sjs complaints BUT I am finally off of the O2 tank and only have to use it for nighttime for the time being which is terrific! That accomplishment is certainly wonderful in itself, but even more fantastic was something that happened earlier today. My new rescue dog who is so fear ridden and anxiety laden because of the very abusive treatment she suffered before I got her, came uncalled into my bed this morning and laid her head softly on my chest, and asked to be petted.
Life is still pretty awesome.
Daisy
soycoffee you made me cry. sorry. I'm new to this site and its amazing the support that everyone gives. I'm learning about my illness and accepting my situation gradually. The positive thing about not crying... is at least you don't have to have a snotty, blotchy face and an awful headache later. I hope your mood lifts soon. If my daughter were reading this she would tell me off for going on about the positives as we are allowed to wallow in our negatives if we want to!!
I have sjogrens secondaire to rheumatoid arthritis. Taking plaquenil (my wonder drug) and nabucox, as well as other bits and pieces for a little bit of this and a little bit of that.
I think we wouldn't be normal if we didn't have a pity party every once in awhile..
I've been known to have my own and quite often lately.. I have pain almost constantly and none of the doctors I see would give me any pain medicine.. They don't seem to understand the toll being in pain takes on a person, especially when it's never ending.. But I finally wised up and switched doctors and he is trying to get me an appointment with a pain management clinic.. So i'm hoping I get some relief soon..
I'm glad you are getting to spend some time with your daughter, Meld.. That should make you feel better even if the pain is still there.. :D
Meld, I just wrote a big long post to you before this one, with all good things to say, how you should rant, rave, and we all will cheer you on, and so and so, and then just as I got ready to send it, my KITTY, hit a button and it was gone. :o
Anyhow, I was just saying that if you stay positive all the time, how are the rest of us going to be able to measure up to that? ;)
We all have to deal with our bodies on a daily basis of weird symptoms, and lots of pain, so surely we can all love ourselves enough to let out some of this toxic stuff that none of us ask for, and kick its butt in some small way. ;D
You Go Girl, cause we are right here with you.
susanep and kitty-lol....
Quote from: Daisy1234 on November 25, 2011, 07:02:26 AM
[ . . . ] My new rescue dog who is so fear ridden and anxiety laden because of the very abusive treatment she suffered before I got her, came uncalled into my bed this morning and laid her head softly on my chest, and asked to be petted.
Life is still pretty awesome.
Daisy
It is, for sure!
Irish, my friend, your post put a tear in my dry eyes. So kind of you... I'd been trying to be so "strong" last week, it finally really got to me. Sometimes we just have to be honest and say "I feel like crap" but I am feeling much better. ;)
Soycoffee,
thanks again for your kind words. I hope you're also feeling a bit better by now.
Daisy,
Now, you know you make me feel almost foolish for my venting, when you go through so much, still taking time to comfort all of us. You are one special lady!
I'm so glad you've had a good day. That's fantastic that the O2 only needs to be used at night.
And your dear new rescue dog asking for a special petting; how very sweet.
She surely knows what a kind soul you have. ;)
I wish you a whole string of good days and more love from that special pet!
Love and Blessings,
Melinda
Thank you, Iris.
I really hope the pain management clinic can help you. Many people have had a great response to different treatments. Being in pain constantly does wear on us like nothing else.
Please keep us posted.
Oh, Irish, I think my daughter knows all her pregnancy woes are temporary and the rewards will be a blessing. At 17-18 weeks, she is finally feeling a lot better and able to eat. She arrived Wed. and we've been pampering her a little. ;) She's a small person and so excited that her "little bump" has popped out, and she's feeling fluttering. So exciting...
Susanep,
Thank Kitty for losing that wonderful post you had for me. :'( Tell them I appreciate them writing!
You're right about being upbeat ALL the time. I try to be comforting to others, and encouraging, but need to be honest that I'm in the same boat as everyone else. That's why we're here, right? I have days I just hurt, I still get a little down, and I get annoyed with myself.
I really feel like I receive much more than I can ever give around here. For that, I am so grateful.
I'm back to feeling fairly good. I seem to handle the small aches and pains pretty well. (I'll say for today, anyway.) 8) Like Irish said, we have our ups and downs and sideways motions on this roller coaster ride.
I'll make sure I'm not positive all the time so no one feels like they need to measure up. 8) Good grief, I'm not one anyone needs to "measure up" to!! My husband could verify that.
I'm on this crazy journey just like everyone else. Thank you; you make me smile.
Take care of yourself, ok?
Melinda
Pity party for one your table is ready. Pity party for one? I think we all have a seat at that table every once in a while. Especially, when we push ourselves through the fatigue and pain. That's ok as long as we get up from the table.
Smileandbehappy, you're right. This is most supportive group of people in forum's out there. They've got me outta more than one pity party. Thanks all of you!
I'm with bloodless, and I've had a stint at it now and then. And I imagine that I'll stop by that table a time or two before the New Year! ;) :D
Patze
smileandbehappy,
I apologize; I neglected to welcome you, so..."Welcome!" ;) I think you'll find this a warm and supportive place, full of people who help one another.
We're glad you found us, and we look forward to hearing more from you.
Patze and bloodless,
I think we all need a standing reservation at the pity-party table!
Take care, all.
Melinda
Quote from: Suzie on November 22, 2011, 11:13:55 AM
Sjogren's Serenity Prayer
God, grant me the serenity to accept I can't do it all anymore,
Courage to set my own priorities in the face of societal and family pressure,
And wisdom to know when to stop before I collapse.
I did a search on the forum for this today; I needed to read it again. I think it's such a wonderful prayer! I'd like to be able to see it every day.
Does anyone know how to make it a permanent link? Kind of like Spoon Theory?
Hi A66ey,
I love this prayer, too! Good job, Suzie. :)
I'll ask my colleagues here about setting a permanent link to it, and let you know.
I think we could all be helped by seeing this daily.
Thanks. I saved it when it first appeared, and would love to see it available in the forum.
Soycoffee