As I read the comments from my blog entry entitled Life and Autoimmune Fatigue: Things Have to Change, I was struck by their authenticity and eloquence.
My readers ALWAYS have valuable insights to share about their journey with autoimmune disease, but I thought these in particular were exceptional, and deserved to be re-posted:
Sue said...
We like to kayak and bike so we have a tandem mountain bike and a tandem sea kayak. We can go on long paddles or bike rides around town and if I need to rest then I stop paddling or peddling for a while. I actually enjoy using the tandems because before sjogrens I was too focused on trying to keep up with him and not enjoying the scenery. Now I can't be left in the dust.
Blogger Mama said...
I try tweak my activities so I am still doing them, just maybe not in the way I was used to doing them originally. So instead of standing for hours baking with my daughter, I bought a stool to sit on instead.
It's all sort of like eating a weight watchers chocolate cake instead of Aunt Betty's triple bypass chocolate cake. It's still a way to enjoy chocolate, just in a slightly different way than you're used to. :o)
c little said...
For the most part I'm doing the duck thing. Calm on the surface, but thrashing and sniveling inside when my inner teenager comes up with a great idea that my outer self just can't accomplish.
I've learned to modify my expectations and be more at peace with the fact that my projects will all be 'in progress' indefinitely, and I have learned to just laugh at over-acheiving organized people's expectations (sometimes just inside, because those people are really pretty humorless). That will never be me, so why agonize? Life has changed, and I choose to spend my energies on things with true value to me and mine, and not feel guilty for things I cannot control.
Your blog and the commenters are really helping me with that. :)
One Woman's Journey said...
Oh my
how this post helped me
"hey I am not the only one"
always so energetic, more then most in my late 70's.
Hey built 3 homes in the last 5 years and relocated to a cottage.
I garden, write, photography and stay busy since I am solo.
There are times the fatigue is so horrible - that I have thoughts
there is something else wrong
besides the Sjogrens-Lupus- Ra that I was dianosed with 5 years ago. Only the last couple of years really bothering me.
Always a healthy lifestyle, diet good and weight 108 lbs, everything fine but finally realize I have to slow down.
Thank you for your post and comments. Ever thankful nothing really bad until middle 70's so I am very fortunate...
Christine said...
The process of planning our wedding with my fiancé has really helped me learn how to manage my lifestyle better and tweak what I can and cannot do. the good part is that I have discovered that the process of limiting myself when needed cuts down on the amount of time I am forced to.
I write this as I am confining myself to a day of rest 4 days before my wedding!
Kelly said...
Luckily, I have been able to hire the most difficult house and yard work done, and while it wasn't hard to give up scrubbing toilets, it's still hard to stay out of the yard. One session of pulling weeds can make my hands unusable for other activities for a few days and I have to keep reminding myself of that and not pull weeds, but I can plant things here and there, deadhead flowers, prune tomato seedlings, etc..
Also, luckily, I've always had a wide variety of interests that have varying levels of energy requirements. Low energy days=knitting in front of an indie film from Netflix. If something requiring high energy falls on a low energy day and can't be avoided, I simply force myself to do it as well as I can knowing I will pay later. Then I pay. Or I just say no and accept the consequences of that decision.
Finally, I've always had energy levels that fluctuated more widely than the average bear, so I never knew if I was going to have a low, normal or high energy day at least as far back as high school. I never experienced that sudden onset of unusual fatigue that people talk about, it has been my constant companion ever since I can remember. Sleeping 8-9 hours per night was the standard and the only way to cope.
Example: when I was in college and interested in studying Architecture and found that it wasn't possible to get through the program without spending insane amounts of time in the labs and pulling all-nighters, and that this was built into the program and expected of all students, I changed my major. I knew I was going to set myself up to fail in that program, or get really sick, because I couldn't sustain that kind of energy output and sleep schedule interruption. Back then, I didn't know WHY I was like that, only that I was and other people seemingly weren't. I picked something at which I could succeed that still challenged and interested me and graduated with honors and mostly healthy.
You make adjustments, as Julia says she has done. There's that old saying about closing doors and opening windows. Also, I try to remember that EVERYONE has limitations and has to make choices and adjustments in one way or another even if it doesn't seem that way. No one has unlimited stores of energy or time. I try to focus on what I CAN do and do well rather than what I can't.
Peggy said...
Like Julia I fought it tooth and nail. I wasn't going to get sick like OTHERS! I knew I could fight it because I ate well and was an avid swimmer...I had perfect sick leave record when I retired for heavens sake and I wasn't going to be like others I read about. HA!
Until sleep deprivation brought me to my knees and senses. Sleep is a priority now...not clean toilets.
I do what I can each day...never stopping for a nap but proceding slowly and paying attention to what my body is telling me right NOW.
It's aggravating because it takes me twice as long to do anything...including something simple like internet searches;sometimes I just give it up because I can't concentrate and I am just plain tired.
I too discovered baseball (go giants!) and don't do a thing after 5 pm but search for baseball on tv. Exercising (swimming) is my first priority every day because I feel normal (not sick) when I am in the water but it takes up half the day. I feel many times that I am just wasting time and I need to be more productive like the good old days - full of pep right up to 10 pm. What the heck happened?
I thank Julia for her blog...it is rooted in reality without too much mind blowing scary technical stuff; if I need serious stuff it's there too when I need it. Besides I love the serene pictures she posts.
LM said...
THIS is (and remains) my biggest problem. The pain, no sleep, crushing fatigue, nausea...Okay, I can soldier through that. It is the fact that I can't do what I used to do that bothers me the most. Matter of fact I'm typing this from my recliner. I want to do something else right now, but can't. I'm still learning, VERY slowly, but I'm learning that if I don't take care of myself and push it too hard, then I'll miss the really important things to me. I plan my week carefully and try not to schedule too many things in one day or week. Finding downtime and an afternoon nap is almost essential in helping me get through the day and feeling okay.
Annette said...
I just wish that I could do what I want to do, but to deal with it I have been convincing myself that I want to do what I am doing. It's working pretty well for me but not for my husband who picks up the slack.
Continuing to work for the past 30 years was like an endurance marathon. I was so used to working I thought I could do it forever but things changed when the company was sold. My contract ended and now, like Lene said in her post, I have more time and energy for friends and family.
AutoimmuneGal said..
This is such an important topic and thanks for always writing so honestly about your experience. It really resonates with me.
I've gotten better at rolling with the punches of fatigue, but I occasionally find myself "feeling lazy" for needing to rest. Because when the fatigue hits hard, I am too exhausted usually to read, write, or move for that matter. I can watch movies and tv and sometimes talk on the phone. Sometimes it feels like I am standing in place in order to start moving forward again. Afternoon naps are essential and my husband often reminds me to get off my feet especially when we have multiple activities planned in a day. We always leave time for me to rest before going out with friends or between outings. This seems to have cut down on being hit on the head with fatigue.
Like you, I have become a major sports fan in my new autoimmune life! I love watching football, basketball, baseball on TV and even soccer and golf. The competition and excitement of games almost makes me feel like I am doing something active, while just laying on the couch. My goal for the fall is to feel well enough to make it to football game and actually be there in person to watch.
stephanie said..
Thanks Julia for putting this question out there. All the comments have been helpful and eye opening. In my must-sit-down times, when I want to be doing, I do feel like I'm being lazy and not contributing. These comments have also made me realize that I'm not the only one with these issues. I guess this will just be another in-progress deal, and I'll have to be creative in findings ways to cope in a positive way. As my husband says: My body is FLUID and my life is FLUID! Thanks again.
ShEiLa said..
Tough. For. Sure.
I agree with you Julia... Modification is key while learning to accept new limitations. I am learning how...Gradually my family will too.
I am thankful for the support I find here... I am not alone.
Well said, everyone. Thank you for your willingness to share your experiences with me and others -- it helps me so much more than anything that comes in a pill bottle.
2 comments:
You will never know how much
the comments made on this subject
has helped me.
I moved back to my home place which is a small town.
Doctors here have not even heard of Sjogrens or my dentist.
I have had times of "no one understands.
Local medical help or my children.
Now I know
I am not alone...
I think it is a long process, to learn to adapt to chronic AI diseases of sjogrens, and also RA and the accompanying health issues. It is devastating to go from a full-on, type A person, to a couch potato. It has been 25 yrs of it,and thank God for a supportive husband and family, and faith. Also, I was helped a great deal by a counselor and also antiopressants. One activity that was especially helpful ,that the counselor had me do, was keep a journal. Not for her to read, but for me to vent. I didnt know how helpful this would be. I would write out my despair, my pain, my hopes and fears, and my prayers. Then at one point in my journey, I started keeping a blessings journal. There are silver linings, to everything we go to, though it is pretty cloudy at times, and all you see is black. But for exapmple, one of my silver linings was that since I could no longer work outside the home, that meant I was always here , (except during hospitalizations) when my kids were done with the school days. And through the years, though I may have not been able to go to some of their school activities, my mind and spirit were always here and available to my kids, to be that mother for them, tnat they grew up knowing, as a person who loved them, no matter what. I would also like to think, that through having a mom with sjogrens, RA, etc, that they learned to have empathy and a spirit of courage and fight, with whatever or whoever they dealt with in life. Now , one son just finished a 2nd masters degree, and is married, and our youngest is working on a doctorate. Both seem happy, and pursuing their dreams. That is all that a parent could ask for. And my greatest wish, was that my chronic illness did not decimate them, but they could grow up to be as normal as possible.
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