I've been thinking about this for a little while and some of our discussions kinda pushed me to put my thought out there…. I am wondering what "stages" some of you went through when you first got your diagnosis and how it compares to where you are now when we hit a rough patch or something else changes on us.
When I first heard the words "it came back positive" I cried but I think it was equal parts stunned that I really have an autoimmune and relief that this IS a real thing. Validation and possible direction to treat it almost left my mind unable to think at all. Now that a little time has gone by I notice myself going through odd moods sometimes….There are times where I feel like the reality of SS is settling into my psyche and I have taken on the idea that my body is ill, while other times I totally reject the idea that I am any different than I was. That's easy to do as the symptoms have been around for so long. It definitely feels like SS has a life of its own sometimes, too. I just got test results yesterday that may mean yet another thing to deal with thanks to the SS and all I was was tired. The thought of one more thing felt like someone had just dropped a dead weight on top of the already heavy load. Waiting to see how I will process this one…..
I'm still censoring what I tell to who, then I get frustrated that I can't talk about what i am dealing with for concern of upsetting them. Heck, I'm the one living through this….then I realize others are fighting for their lives so what am I whining about.
I'm wondering if anyone else finds themselves moving between stages and also what you do to cope when certain things hit. Self talk? Yoga? Do you have quotes that you hold on to? This so-called silent disease causes me a lot of internal noise sometimes.
Such a tough question to answer . . .
When I was truly diagnosed this past May, I wasn’t upset. Because I have a daughter with lupus and knew I had the antibodies myself, I thought it wouldn’t be a “big” thing . . . Just some dry eyes and a dry mouth . . . But as the months and the disease itself has progressed -piling on complication after complication - I’ve begun to become discouraged.
Do you ever have one of those “rude awakenings” during the night and think to yourself “holy crap! It’s going to be this way for the REST OF MY LIFE!”??? Those moments have to be the worst.
But then I find other moments when I feel things are going to be okay. I spend time meditating. . or burying myself in a good book for days on end. I still socialize with good friends and family members, and - even though I’m out on disability from my job at my church - I’ll always have my faith. I’ve also started blogging again because I have historically used writing as a great creative outlet and a way to process whatever turmoil I’m going through.
And - because I’m not working - I also spend a lot of time now taking my 85-year-old mother to visit my Alzheimer’s-ridden father at the nursing home - allowing me, in a strange way, to become closer to each. And if you ever want something to fill your gratitude jar with, you just need to spend a day in the room where the Alzheimer’s patients are placed for meals and activities. Breaks your heart . . .
So I hope that you’re given the grace and strength to handle this newest challenge you’re facing.
And as far as a motivational quote, I have always tried to live up this one from Proverbs: “Strength and dignity are her clothing, and she laughs at the days to come”
I love Proverbs and some of the examples of women of strength throughout the Bible are awesome for calmness and motivation for me, personally. And yes, its that "rest of my life" moment that led me to put out the post. I kinda feel like I am working through the stages of grief on some level. There are good moments and bad but the processing is still active.
I'm liking Yoga because regardless of how I feel when I'm doing it (or trying to drag myself off the couch), I feel remarkably better when I'm done. I need to get it to a place of regular habit. For a person that has always been very physical, not being is a tough adjustment. Took a walk on the beach with friends recently and it reminded me how much I love that too. Maybe that's part of it....grabbing the moments.
I was diagnosed last month, but I had been dealing with dry mouth issues for a few years. And in the last year, I haven't been very motivated to exercise. Now, I've never been a big fan of exercise, but I've always kept moving. I blew it off on being so mentally exhausted from this new, big job I started last year. Like you, I was relieved to find out I wasn't just making up these symptoms in my head, and it is actually a "thing", not just psychosomatic.
I'm not a very emotionally sensitive person, but when I made it to the phase of feeling sad about this, of course I couldn't shed a tear, which is wholly unsatisfying!
If I had to pick a "stage" that I'm currently in, I guess I'm in the unmotivated phase. I know I'll feel better if I start dancing or practicing yoga, but the tired feeling is overwhelming most of the times. If anyone has tips on how to break that vicious cycle, I'd love to hear it.
Oh, and I do find comfort in prayer and reminding myself that I'm so very lucky for so many other reasons.
Yes, Enjoy Life, this process we are involved is just that - a process! I was thrilled when i finally got my diagnosis.having spent 10 years having doctors tell me the lab tests showed nothing. It was joy to put a name on it.I am fortunate that i deal with "just" joint and muscle aches and pain, dry and burning mouth,and fatigue. Most of the time I know there are so many others worse off.
Then there are the days that i don't think I can go on. You see, I'm up at 5:30 and by 6^) I try to relax a little on the couch so I can go out the door to work at 7:00. I have been cutting my hours back little by little. and just sttarted working 5 hours a day. Some days I cannot wait for those 5 to end. BUT I'm thsnkful!
Then there are the days when I know this will not end and I sure would lie someone to feel sorry for me even a little!
I guess that's why we have each other!
Thanks for this wonderful post EnjoyLife :)
I do believe that with the SS we may dip into depression for a while or may be longer. I have done extensive research on depression over the years and come up with my own ideas. I think depression might have a bad rap. When we go through a life changing experience like getting SS it alters the wiring of the brain. This is normal when you have a traumatic experience. For a while maybe you need to relent and be on the floor with your depression. You need awareness of course that you are in depression but you are not depression, you are still that whole functioning person. While your brain gradually rewires you will need to feed it with healthy knowledge/lifestyle.
What has given me hope beyond this depression is finding out about brain plasticity. The brain is able to regenerate, make new branches/wiring right up to the day we die. Therefore I believe with the right exposure to knowledge and lifestyle you are able to rewire your brain from a traumatic experience. Is this not just the most amazing fact!
Even with knowledge about depression getting diagnosed with this illness brought me to my knees with despair. It triggered depression and I sat with it and was patient while I figured out what was happening within me. There was no magic pill just time, research and allowing everything to be as it is meant to be. I slowly started listening to what resinated with me and what not. For example when people told me I should try a diet or go on anti depressants, I allowed myself for the first time in my life to just say no I am going to do it my way. Saying no and really meaning it has helped my recovery. I have had to observe my body stress. In the past I would feel the stress physical eg: in the solar plexus. Now when I feel stress enter my body I am aware and soften it. This kindness to oneself has had a huge effect on my wellbeing.
Most importantly was as I say, cleaning out the closet, getting rid of the things in your life that no longer serve you. Thats people and habits/negative thoughts. This is an ongoing process but I feel lighter and happier. I had to have a really good look at me, the inner conversation I have with myself and it was not pretty. Sometimes I think our mind actually is a bigger challenge than the Sjogren's.
I practice mindfulness which has made so much sense to a otherwise busy mind and brought me much joy. It's a simple practice of just being present in every moment of your life. You connect with your breathe to quieten the mind and suddenly the whole world looks anew. Quite lovely :))
What brings me always back to reality when I loose myself in the victim state is that I have children who are in the wings observing me and learning how to deal with illness/trauma in their lives. I am so grateful for them as it would be so hard to find motivation some days.
Then its this site which I dip into when I need to just unload. It goes out into cyberspace but typing my feelings and not storing my thoughts is healing. So thank you all you lovely people for the patience with my long winded chatter. :))))
Kate, that was wonderfully put and I think you put the finger on what I was feeling today. After being very sick for over a week, finally getting moving, then hearing potentially bad news from the doc again I commented that I felt like someone had just thrown a weight on top of my already heavy load. She said I should find a bright spot, etc. I normally do but I told her that this time, I just didn't feel like it. I get tired of always being perky. I think you are absolutely right that sometimes we need to sit still with our thoughts. Feel them, see where they settle and let a little rest and healing happen before jumping back up and pressing on. I think I've mentioned that my Masters is MHC and what you said was a great reminder and very helpful. Know that your words don't disappear into cyberspace…. they touch people too.
Like the others said, after 10 years of being blown off, it was nice to be validated and have a plan of attack physically. I think the emotional end sneaks up on us. LOL. I can see myself moving into different stages at different times and I know that how I deal now isn't the same as it was years ago, or even at diagnosis. We really do grow with change.
Enjoy Life, I read your post with great interest. I have always been a very positive person even with severe allergies to almost everything and Fibro for more than thirty years. But this SS thing has me beside myself. I can not calm myself down. My biggest fear is there are almost no drugs that I am not allergic to. What do you do when you can't use an antihistamine? I itched all last night.
It is my hope that I will become calm as you sound. Internal noise is pretty normal when life smacks you in the face.
I like you don't talk to other people and internalize most of the time and feel guilty when I complain to my husband. Tonight was the last straw when we had to sign up for a new drug plan. Ha! How do you get the insure rto pay for even generic drugs when they also have to be ordered by manufacturer? I certainly was not quiet with my husband regarding my fears tonight. Poor man!
We can all hope that soon there will be gene therapy or something else that will make us not so dry and sick. When I read some of your beautiful replies I thought maybe I can get to the point they are at and hope for the best.
There seems to be a need for continuous adjustment to what is current. Right now I am dealing with being worn down by the lack of comfort and ease. No matter how or where I sit or lay, stand or walk, I am never at ease, there is always physical distress and dysfunction.
It's a never ending process to deal with all of this. There is certainly a grieving process going on, with stages of denial, anger, bargaining, researching, and the perpetual quest to 'get fixed'. Every time you think you've reached a place of acceptance, that your head's in the right place, there's another issue to process...
Being able to put it all in words is a great help to me, and the feed back is invaluable.
We just push on the best we can, trying to hang onto all that is near and dear to us! :)
This is why I love this board….everyone has a different piece of the puzzle yet I can relate to every single one. Together we make a whole picture.
its so good for me too, to know that others know the nuances of what goes on- not just physically but mentally and emotionally.
I hadn't read this discussion before, but it's a really positive one, and as we've got so many new members, it's probably worth a view again!
Jules, thanks for bringing this back up. I had forgotten about it but I just found myself rereading each and every response. We spend so much time dealing with the physical aspects that the emotional doesn't get tended to as well sometimes. I really needed this today. Like SK said, it really is a never ending process of dealing with more changes… Thank goodness for such a supportive community.