Sunday, July 12, 2009

Approved Fatigue

Image found here.

I miss being authentically tired.

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.

19 comments:

jenhex said...

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

Louise Larsen said...
This comment has been removed by the author.
One Woman's Journey said...

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.

Kat Finch said...

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.

troy tully said...

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.

Anonymous said...

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. : (

Fearless Fibro Warrior said...

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!

Jodi Anderson said...

This is such a relevant post, and so well said, but the comments are just as compelling. Wow. xo

Anonymous said...

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!

Claudia Nugent said...

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!

Anonymous said...

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.

Anonymous said...

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.

Anonymous said...

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.

Eliza J said...

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.

sharon harris said...

I never thought that I would be exhausted just from taking a shower.
I feel like I look "lazy".

Linda tolqer said...

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.

Anonymous said...

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.

jacqueline culler said...

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.

Carolyn McBride said...

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..

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