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wendya432
08-30-2012, 08:13 PM
I hope it's ok if I vent a little here. I'm just so tired of feeling so bad, and just not having anyone "get it". I overdid it today. Well, probably yesterday, too. Lots of stress, and too much activity I guess. So now I am just beat. I'm hurting and sore and tired and rashy and emotional. I missed a call from the rheumy today when I was vacuuming and didn't realize it until too late. They could've seen me today!!!! But I didn't even notice I had a message until after they would've been able to see me. That was just... crushing for some reason. Maybe I'm just exhausted and emotional. I took a shower and ended up just not even able to function afterwards because I felt so crappy.
I called my mom today and just broke down. She ended up coming over and made the kids dinner and I got to lay down. It was nice to not be in charge for a couple hours. My husband works out of town 5-10 days at a time and then is home 2-4, and I stay home with the kids. So it's a pretty constant thing and I don't get to recharge very often. But, when my mom was getting ready to go she made some comments to me that make it seem like she thinks I'm just taking the easy way out. I tried to tell her that I hurt, I'm not lazy. I want to be me again and I'm so frustrated that I can't be doing what I used to do. And my kids are going stir crazy since I've been hurting so bad lately. (Thank goodness school starts next week!!!) But she just doesn't seem to get it. And she is a nurse!! And my sisters stopped over to take my daughter with them and my niece and nephew and they both just looked at me and didn't even say anything to me. I know they were thinking that I was just being lazy, and it just hurts that think I would want to be like this.
I was always someone that was active, even though I'm pretty type B. :) But I used to do circuit training and rock climbing, and always some kind of aerobics or something!! Heck, 2 years ago I was out every day with the 3 yr old in the jogging stroller and the 1 yr old in a back carrier. Now, I have a hard time going up the stairs. I'm having a hard time standing at the stove to cook dinner. I've always been one to "do it myself" and rarely ask for help. So for them to judge me for having my mom help me and think I'm just being lazy.... It just... I don't even know. I guess they just don't understand it. They actually thought I was making it up when I told them that I have a reaction to florescent lights!!!
And I got a call from the surgery center about my procedure coming up for my kidney stones. And I have to stop taking the motrin 5 days before I go in. Which, since I haven't been able to get into the rheumy yet, is my only defense against the inflammation right now. I'm taking 800mg every 8 hours and it's what keeps me somewhat able to move. So I have 5 days of pain to look forward to! And no lotion the day of. Which means no sunblock. And I'm thinking, oh great, I'm going to get such a bad rash!!! I can picture myself in all my glory turning red... lol!! But hey, it's 3 days before my rheumy appt, so I'll be in great shape for her. ;)
My husband and I have a joke that I'm 30 on the outside and 80 on the inside. But sometimes, it just makes me want to cry because it's so true!!!!
I'm just having a really rough day and no one seems to understand.

n.mac
08-30-2012, 08:46 PM
So sorry that your having such a rough time. Like your mom my wife is a nurse and sometimes she will forget that I can look ok and still feel pretty bad.
Not that I'm complaining -my wife works very hard herself and for the most part is very supportive and always goes to my dr appointments.

Most of my issues have come from my in-laws- this last new years day we went to my in-laws and I felt terrible but went anyway-I got a few snide comments about not playing some board game everyone was playing. Later that evening I ended up in the er with a high fever of unknown origin.

My mother-in law merely said I guess you weren't kidding when you said you weren't feeling well.

Like they say you can pick your friends but not your family.
And I'm 51 yrs old -too old to be having in-law problems!

Take Care Niall

Derrie
08-30-2012, 08:47 PM
Oh, Wendy, I'm sorry. I know it's not the same as having the people in your life truly understand, but I wanted to assure you that I understand. I am sure everyone here really understands.

I especially sympathize about having to go off Motrin! I rely on NSAIDs to keep pain and inflammation down, and I've been having enough stomach troubles that I can't take them like I used to.

I hope all goes well for you with the surgery!

steve.b
08-30-2012, 09:57 PM
maybe this thread could help
http://forum.wehavelupus.com/showthread.php?11692-The-Open-Letter-To-Those-Without-CFS-Fibro-…

i found it helped me understand.
hopefully mum can.

kim,l
08-30-2012, 11:51 PM
dear wendy i am so sorry this disease gets the best of all of us at one time or another and we need to vent we are here for you anytime hugs kim

Nonna
08-31-2012, 01:00 AM
Sometimes, besides our families not really understanding ; it's ourselves not understanding we now have limits. I want tone able to do like I did a year ago. But I can't; if you are 30 and feel like 80. Then I am 65 feeling like 115. I know how you are feeling. Big hugs and good luck with your procedure.

blackeight
08-31-2012, 02:11 AM
I am sorry you are having such a hard time. I understand how you feel, just last summer I got down too 145 lbs and was walking 2 a day with my kids and dogs. Heck a few months ago I was out in the garage using my bowflex to the extreme I could almost bench my weight and hitting the bag. Now cooking supper and getting myself dressed is a major task. I have over done it also and taken on watching a 2 year old during the day. UH oh! I may once again have gotten myself into a lil too much. But I just want to be me again. I tell people someone hijacked my body and won't give it back and I haven't figured this one out yet. LOL! I try to be funny or crazy just too make it through. I was over doing it like you were and end up crying and hurting and just feeling crappy. I can tell you that it only makes it harder to make it through the day. Feel free to message me anytime. Like you I can't do much anymore like i used too but trying to learn how to live with it.

Gretchyn

wendya432
08-31-2012, 05:02 AM
Thank you a million times everyone! It is so great to know I'm not alone, and that I just have to get through this rough patch.

Thank you for the link, Steve! I think I will print it and give a copy to all my family.

MorrisonGal
08-31-2012, 09:09 AM
Wendy, I totally "get it". I'm sending you a big HUG! When I'm sick so many little things bug me - like the sun/lights, having to deal with pain, getting frustrated at things I wouldn't when I'm feeling better, people who can't know what I feel like on the inside and tell me I need to just try harder, and not being able to do things I used to easily do. It feels like everything is out of whack and it's overwhelming.

tgal
08-31-2012, 11:03 AM
So sorry that you are having a rough time. If they only knew how much we wanted to be doing the things we used to do

jmail
08-31-2012, 03:17 PM
Hey Wendy, sorry 'bout the potholes & chuckholes you've encountered lately in the roadway of life - hope you're doing better tho...

I wonder if our handsome, young, magnaminous admin can add a "Gentle Hugs" button, like the "Thanks" button to the posts?... tic

LenaT14
09-01-2012, 06:21 AM
Hey there, so sorry to hear about your struggles, I totally understand. I too am a Mom in my 30s and am used to being superwoman while my husband works 15 hr days 6 days/week. Believe it or not I was told by my mom who is a lupus/r a sufferer herself that I must enjoy being sick because I refused to take the huge dose of steroids she wanted me to take. I'm very sensitive to drugs and it would have done more harm than good. Then just yesterday she told me that it was "mind over body" and I needed to will myself to feel better.
There will always be people in your life who say stupid and hurtful stuff but you have to know that most of the time its ignorance or in her case lots of narcotics talking. We can't all be crazy!! Just be patient with yourself, the kids love you no matter what and who cares if everything isn't done the way it used to be?!? I know the dishes and laundry are still waiting when I feel up to doing them :-)