3rd days out of work. I attempted to go in but I couldn't push myself any harder to *just make it to 5pm*. I'm not use to this. But for the past few yrs it's all I know. Just dr appts after dr appts. Pain when I sleep pain when I'm awake. Waking up and feeling as if there's no life in me. In order to get out of bed I have to mentally tell myself to get up. I don't just jump up anymore. I have to roll myself out of bed. And from there begins my jouney to make it through the day. It takes twice as long to get ready. I don't bother with my favorite eye shadow anymore. Or putting my victoria secret champagne color lip gloss on yet I still carry it around just in case, taste nice too. I don't even use my bath and body lotion that I use to love. Nor do I fix my hair slightly parted to one side. Right now I am happy to be able to put on my clothes which probably don't even match and I tie my hair back so that it's not in the way. My husband probably look at me and wonder what happened to me and why have I allowed myself to even step out of the house like this. He use to say my skin is so soft. But all I see now are rashes. I don't bother with all of that bc I don't feel that way anymore. I loved to smile but now smiling is forced. Not fake but definitely have to force it bc it hurts just to smile. Lupus and now Sjogren's- it's not as invisible of a disease. It changed me from someone who jumped out of bed before the alarm even goes off to not being able to get out of bed. From someone who loves the park and the beach to having to hide from the sun. From having soft silky skin to rashes whenever wherever. You can tell a person's pain by looking at them in the eyes...my eyes will tell you I'm tired, pain all over is indescribable to most, and wish people around me would understand. But don't worry too much about me... I was born a fighter and will fight all of this till there's nothing left in me. So long as I'm breathing I'm going to keep trying. Sometimes it's just good to write it all out so that someone else out there forcing that smile knows...you're not the only one.
To help me stay sane I started a blog. Writing is therapeutic for me. If interested
Hi! hi! hi! <--- These are exclamation marks, usually I make them and don't mean them but I guess this time I'm making them because I'm glad I read a post that I can relate to at this moment.
I have been on disability for over half a year now due to the chemotherapy I had to go through for Lupus. Due to doctor's orders I was not able to return to the same profession I was at previously. I am now looking for a new job. I have Sjogren's too, I wear glasses now and I used to wear contacts every day. Sometimes I have trouble getting up but I fostered a mom and her 6 puppies for 8 weeks, well one puppy passed away so 5 puppies. I ended up keeping one. I love the sun and still do other than that it makes me sick. So now it is predominantly a love-hate relationship for sure. The thing that makes me wake up in the morning is the one puppy that I ended up keeping. Otherwise I constantly wreak hate on the world for having this disease, I'm starting to think that the lack of sunlight also causes bouts of depression.
I can relate to you because I used to jump out of bed with minimal sleep too, now that is not the case. I used to care more about how I looked but now I care internally and it eats me up inside but I do nothing about it externally because I no longer see the point. I used to like to shop because clothes fit me well easily. But now I have to think about sun protection, I can't wear eye makeup or contacts anymore because of the Sjogren's, my hair is the shortest that is has been in my life after Chemotherapy for Lupus, I used to put my hair to the side as well, now i just towel dry it and put a UV hat on. I vow to never have my hair this short ever again after it grows back. I have a round face from prednisone. I used to smile alot genuinely too, now I am fake as hell. It's really funny because the world for the most part thinks I'm an angel. Only my inner circle knows I'm a demon about to burst. I used to scuba dive, snorkel, boogie board, paddle board, kayak, swim, dive for dead sea urchin seashells- now, that is all gone. That was who I was. Now it's like a lost identity case. One thing I do not relate to, is that I am not a fighter. I would have been happy to pass away in the hospital last year. Last year I was in denial, this year I'm like halfway through acceptance- I suppose chemotherapy will do that to you. I know one girl who is a fighter from my lupus support group, life doesn't work like this but I would have happily given my body to her. She's been through the ultimate hell. She'd be more grateful for my body than I am.
Yes, it always helps to write things out, whether there is an audience to read or not.
It can b frustrating, ive had sle for 10 + yrs , im 51 now but am a very young 51, was never active, smoked & drank b4,now i go 2 the gym & push to keep moving i dont do much but if i treadmill walk 20 minutes ill feel good about myself, doc says its ok to work out if sore so i try weights too, legs n arms. Quit smokin 5 yrs ago. Have a margarita once in a blue moon. Listen 2 yur body but dont stop takin care of you, put that lip gloss on, fix yur hair, do what u can itll make u feel good dont give up on that. My hubby says i changed alot, dont like to do things like i used to, i think its cuz wen we drank alot i was a fireball , now im relaxed n calm. Been sore for 2 days in a row it sucks!!!
Hi Ratana21 your post moved me so much. Keep forcing that smile as one day it won't be forced. We have to keep going no matter what. I pray that one day they will find a real cure but until then don't give up. Sending you big hugs
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Something to make all Lupies smile.
Does anyone ever go to a rheumatologist appointment and come out smiling? :\\
