I miss being tired because I have put in a long, hard, physically active day. One in which perspiration dries to a salty layer on my skin, and is only removed by a steamy hot shower.
I miss having muscles that are sore after an exercise class, or a long uphill hike. I miss putting on my gloves and unloading hay bales from a wagon and grumbling because it's such dusty and scratchy work.
I miss jumping and running and dancing and doing all those things that leave one gasping for breath but giddy with laughter. I miss feeling bone tired yet confident that a good night's sleep will erase it all, and I will awaken the next day ready to tackle anything.
Autoimmune fatigue feels fake. It feels artificial, unnecessary and undeserved. One should have to legitimately earn this sensation of feeling so tired, and I haven't done a single thing that warrants even one drop of sweat on my forehead.
I don't deserve to be this tired, really, I don't.
I wonder what makes exhaustion legitimate?
I mean, what kind of exertion earns that gold foil stamped certificate of authenticity? Is it energy put forth for some kind of visible product? Is it sweating resulting in the appearance of toned and fit muscles? Is is made evident by that newly-mowed lawn and weed-free garden? Do shiny floors and gleaming polished furniture give legitimacy to someone's hard work? Or hours of labor resulting in stacks of freshly-printed, collated, copied, and stapled reports? How about a hundred shingles newly nailed in perfect, even rows? Or the person that hands over a dozen crisply ironed and spotless dress shirts?
I'd put my stamp of approval on an individual collapsed in a heap as a result of those exertions. Yessir, If I was in charge, I'd smack that person's forehead with a big old stamp that said, "THIS PERSON DESERVES TO BE TIRED". And I'd put a gold sticker on their chest, too.
Now, I know that my fatigue is real. I do have that knowledge tucked away in my brain. I have been told this by reputable people, and have read it in authentic medical sources.
But....
Knowing is different than understanding.
26 comments:
thanks for understanding it!!! nobody gets what its like to be tired all the time...i used to be very very active and just reading your list reminded me of all the things i miss doing.../.knocking down a chimney for 3 days straight and sweating with exhertion...etc..thanks
Felt so good early this morning.
Errands after being home bound because of snow for 10 days.
When I pulled in long drive at noon - I could hardly unload the groceries. Still very very tired.
Hopefully it will not be like this tomorrow. For several years with these attacks - I would think is this what aging is - now I know it is not the agings.
Thank you again for contacting me.
I have recently been diagnosed with SJS. Mine started with fatigue and painful joints. It is so hard to explain to someone who doesn't understand that you are so completely exhausted that you cannot put into words just how you feel. There are no words for this feeling other than " this just doesn't feel right. It's not normal. My body is betraying me."
It gets to me some days. I feel like crying alot.
My job is quite physically demanding and with fighting this fatigue, plus osteoarthritis in my shoulders and knees and now D.I.S.H in my back, I don't see how I will be able to continue working. I'm hoping to learn more on this disease and the other things I am dealing with that I may be able to better myself. Thank you for your posts.
Thanks 4 the post! As a man w/secondary sjogrens I often feel less than..... Because of how tired I feel. I have had some relief since beginning methotrexate injections, 3 months ago.
I practiced figureskating when I was younger for 10 years (several hours a day without problems) and now at the age of 27 I can do some mild garden work for about 2h's max. After which I need to go inside and crash on the sofa for about 5h. Just doesn't feel like it's a fair trade. : (
I know it sounds silly, but I miss being tired from shopping all day-the way my arms ache from carrying my stuff, legs tingly from all the walking. Thanks for putting it to words!
This is such a relevant post, and so well said, but the comments are just as compelling. Wow. xo
Someone who gets it - lots of people who get it! I had my hip replaced in November and my Rhumy tells me that I have to have patience as I am still recovering. A normal person might recover in two months - not me. I am so tired all the time. I can't build muscle working out because I can't be consistent. I am anemic and take iron pills but it works for short periods and then I am tired all over again. B12 doesn't help.... The doctor said there is a medication that can help with the exhaustion but he is not ready to start me on it. Thankfully I work from home but it doesn't help that I am tired and my mind just stops working..... Thank you for understanding!
I just found your blog today. I glad I did it. I feel just like what you have described. I also miss being tired. My fatigue today, made me to cancel a doctor's appt. to check on my swalling lymphnodes, and physical therapy. You actually made me feel better knowing there are another folks dealing with SS fatigue!.
I'm also making today a blog www.blogger.com/ClaudiaNugent where I'll be posting my diary!
Knowing is different than understanding.
I totally agree with this sentence.
Nobody understand why I'm always so tired. They all think I'm lazy.
Just like the others...It is good to hear other people's perspective. I am struggling with my job. It requires that we work in excess of 60 hours a week regularly and more in during deadlines...and I just cannot do it any more. I get a lot of comments for not working hard...they do not realized what it is like.
I am definitely thinking of long-term career change.
Thanks for your post. I barely made it through my last year of teaching ending 2011, but, thankfully I did! I'm single and have only myself to rely on. I have tried to explain to my brothers what SS does to me, but they don't listen well or explore internet info I forward. I am pretty sure my sis-in-law and probably her mother both think I am quite lazy. B-12 shots are helping me as I had almost none in my system 3 months ago. Now the glands in my throat and whatever is in my cheeks are very swollen, chipmunk cheeks. My Doc ordered anti-biotics to make sure it wasn't just an infection. They are not working. Will call him tomorrow. Anyone know a Sjogren's savvy Rheumatologist within 3-4 hours of Chicago? Please let me know.
Oh my gosh did you ever "nail it"...I haven't felt authentically tired in years. You described what it feels like more than I have ever been able to. I have MS and Sjogrens. Copaxone, Vitamin D and B Complex have helped very much...but still, YES, I know that nasty fatigue feeling when I do too much...that shouldn'be be considered too much. So happy to have found your blog. Thank you.
I never thought that I would be exhausted just from taking a shower.
I feel like I look "lazy".
I to have sjogren's and the fatigue is a huge problem. People don't understand why I spend so much time on the couch. I just can't move; when I do, it feels like I'm walking through mud all the way up to my neck. Thank you to all who have shared. It's nice to know I'm not alone.
wish my fam could understand. they call me lazy. it used to anger me, their judgements, now I just feel sorry for them, for they are my blood and this may too happen to them. I know I will not be around to witness this in the flesh, but I hope to bring comfort as spirit. I am tired, from having to defend the issues I deal with daily. AND I so totally understand the difference tween healthy fatigue and autoimmune fatigue. That is the first time I have seen this correlation in print. Thank u I have tried to explain this to people .but they just do not get it.
I am so glad to see these posts for years I have been having problems with weight gain. I use to be very active raising 3 children of my own adopting 4 and fostering over 40 other children but now I feel so tired just from doing 15 minutes of house work. I feel like maybe I have done to much in my life and this was God's way of making me slow down. I get it.
WOW... This is just like I read my own thoughts.. I miss being tired an exhausted from putting in a full days work. At least then I had something to show for it.. PFFT.. Now.. I am exhausted when I roll out of bed.. Someone gets it.. I want my life back.. Only thing I complained about was not enough time during the day an not enough help.. Oh to have them days back..
Embarrassed. Apologetic. Impatient. Defeated. That's how I used to feel--and I admit that I sometimes still do. But most days lately when I'm hit with fatigue, I just feel ambivalent. I am learning to accept it like I do my crooked nose, my graying hair, and my laugh lines. They are all part of the map of my life. If I can learn to accept the limitations of this disease the way I accept my height and eye color, perhaps I will be more forgiving of myself when I walk in the door at the end of the day and only make it as far as the couch. Thank you for your blog.
Kelly,
Lady, that's how I feel too. But I guess I should admit: they are my true feelings of guilt, defeat, apologetic, etc. It just smacks me out of the blue. I've been sick for over 10 yrs. with stuff, and still worked. Starting with Epstein Barr. And it progressed from there. At age 45 I had to stop working! Pfft! Done. I don't even think I've accepted that, which was almost 5yrs ago. I guess I applaud us all for being amazing strong Human Beings. Thank you for your blog.
I keep waiting for tomorrow when I wont have to open my eyes and immediately realise I can hardly summon the strength to move I ache so much.I keep sleeping sleeping sleeping hoping I will wake up stronger. Tomorrow never comes. I am asking myself what I am living for when I literally have to drag myself about AND EVEN the most basic things like holding a cup or typing are a fight to achieve.Can I live in this body for the sake of my loved ones feeling like this for the rest of my life? Diseases like this make every breath a struggle ...I hope that society wakes up and researches a cure. One day the invisible grim reeper that slowly bleeds us to death may come for them or someone they love.
Just helps to know there people out there who understand this debilitating fatigue, and what it does to you and your life. #NotLazy!
Just found your blog. You put it so well. I am tired of being tired for no reason. I've gone from someone who trained running, cycling, swimming for 10 hours a week to someone who struggles after taking the dog for a walk. SJS sucks.
I've been to see my consultant today to be told I will not get much better than this with my 'optimal' treatment. I've been too tired to cry about it though.
The comments about SS fatigue are expressed so well. As most of the previous comments have said, I am tired of being tired for no reason.
But that last statement is not entirely true. I, and all of you, do have a reason for our fatigue; we just don't like it. I was glad to read that other SS sufferers also feel unjustified with their fatigue. And I am surprised at the number of people who say they used to be very active physically as well as being athletic. I was the same.
I used to be able to go to the gym, play with my kids when they were younger, take care of my lawn and garden, do the housework as well as participate in several sports. Now I limit these activities and can't let myself feel guilty for not being able to do it all without hired help or having to make choices depending on how I feel, or to let so many things go at home.
How many of you know or think you have blood relatives with SS?
I had not paid much attention to the fact that I have been sweating more easily the last year until my Accupuncturist commented on my increased sweating. I passed it off until it occurred to me it may be related to one of the medical conditions I have, which it seems to be.
Unfortunately, my issues don't end with Sjogren's. I am also diagnosed with Undifferentiated Spondyloarthritis, POTS (Postural Orthostatic Tachycardic Syndrome), degenerative disc disease in my spine and Hemochromatosis. If you have any of these medical conditions you will recognize them.
Although I have been prescribed several medications to help with all of the above, I take some solace in the fact that I think I am pro-actively reducing the dosages of each by actively taking care of myself. I still go to the gym for modified workouts, I work with a personal trainer on occasion to get advice for doing exercises that help my muscles, I get Accupuncture every 2 weeks and luckily my insurance helps, I see a chiropractor as needed and I have met with a dietician to learn to eat foods that do not cause more inflammation. Unfortunately, alcohol does cause inflammation. So if I really want a glass of wine I drink plenty of water, too, and save this for a special occasion.
I have also learned to drink freshly squeezed lemon juice in my water daily. I keep a water bottle with me and use juice from 1/2 to 1 whole lemon daily. The lemon juice is supposed to detoxify the liver. The added benefit for SS patients is that it stimulates the salivary glands to help with dry mouth and tooth decay.
Thank you all! Have sjogrens and not long been told I have sinus arrythmia, Ibs, asthma, etc. I get so very tired and couldn't figure out why besides my heart problem now I read u r all suffering from overwhelming fatigue Too! So good to know Im not the only one. So fed up with exhaustion. Its not my age! (67), so over being tired! I have to have a lie down and wake up 3-4 hrs later and feel great to find half the day gone and very little done. So frustrating! Thanks everyone for sharing. I think I get it. God bless you all. Hugs
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