sick and tired

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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/22/2009 5:33 PM (GMT -7)   
I am so sick and tired of feeling like I let everyone down. Tonight was the Relay for Life to raise money for cancer and we were supposed to go, a group at my church has a team. My hubby was supposed to get off early and we were going to walk the survivor lap, hang out a bit and go home. Well, he got really busy at work and wasn't able to leave early as planned, I've got a nasty headache and my hip is killing me and he's tired so we aren't going to go. So now I feel like I've let my friends at church down.

Then, when I started making all these plans my daughter was going to have to skip TKD practice to go with us and now that we didn't go it's too late for her to go to practice. Now she says "she knew this was gonna happen". I just don't know what to do anymore, I am sick of feeling like I let everyone down. cry
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 5/22/2009 6:31 PM (GMT -7)   
Arghhhhh!!!

((((((((((( Stacie ))))))))))) I do a lot of last minute stuff so I'm not committed to things I won't feel "up to". It really does weigh us down when we have to back out of activities last minute. I'm so sorry.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/22/2009 7:14 PM (GMT -7)   
I understand how frustrating it is. My husband asked if I want to go to a movie with another couple he knows from work. I would love to make friends locally but how do I know how I will feel in advance? I hate being asked to committe to anything more than an hour or two in advance. I try and take things on the fly whenever possible. I rarely plan anything anymore because of how unpredictable my energy and pain levels are. I wish I could do more than say I understand but really that is all I can offer. I am so sorry you missed out on something you looked forward to.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/23/2009 7:29 AM (GMT -7)   
((((Stacie))))

Your daughter needs a good spanking. I'm sorry folks are so insensitive to your medical condition. I've learned to never commit, but to tell folks that I'd love to come, and hopefully I'll feel up to it. People understand if you make it known that some days your body won't cooperate with your plans. I'm always genuinely grateful for invites and make sure everyone knows that.

I hope you can somehow get this through to your daughter. Has she read the spoon theory?

Take care sweet Stacie,

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/23/2009 9:19 AM (GMT -7)   
Thank you Rosie, Redrose and Pat I appreciate your kind words and suggestions. I guess I am going to go back to not making plans in advance and not committing to anything. The sad thing is, I don't think people "really" understand what we go through. They see that we look healthy and that's all they see. I know I have a lot of family members that have no clue, most of my friends are more understanding than my family (excluding my kids and hubby).

You know I don't think my daughter has read the spoon theory, she's 13 and all this time I thought she understood what I was going through but at 13 kids don't think about anyone but themselves.

Anyway, thanks again for listening :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


LadyTsuguri
New Member


Date Joined Jan 2009
Total Posts : 17
   Posted 5/23/2009 10:33 AM (GMT -7)   
Ugh, don't worry. I feel like I do this a whole lot. More then a whole lot even. I'll commit to something and I'll end up feeling really crappy and really not feel up to going, like even my doctors appointments. I know I let everyone down when I do stuff like that, so I know how you feel. Don't worry, we understand what your going through. All you can really do is apologize because you certainly can't help how you feel. I'm 17 and already doing this stuff, so it sucks. I hope you feel better soon!

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/23/2009 10:58 PM (GMT -7)   

This is one of the hardest things for me to deal with, because I don't feel most "normal" people really get it at all.  Why would they?  Seems like it's a constant battle between explaining it to others, or denying it to myself and the tension of that never goes away.  Then there is the guilt of knowing that others miss out sometimes by association.  So I really found this post and thread so reassuring in the sense that it's a common frustration, others DO understand, and it is just something we have to learn to cope with (as do our friends and families).    It's a heavy load, but it helps to share and feel heard.

 

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Angel MJ
Regular Member


Date Joined May 2009
Total Posts : 36
   Posted 5/24/2009 12:04 PM (GMT -7)   
stacie ... my heart just broke. i am a firm believer in things happen for a reason.
hubby worked late, not in your control ... but also you were not feeling physically up to it & you did the right thing in listening!
in an ideal world the ppl worth having around would pop by after to see you're okay ...
right now you may feel you 'let them down again' but i say 'you stood up for your body and respected the need to hang back' ... doesn't less today make for an easier tomorrow?
as for your teenager ... being just that! maybe you could see a family counselor? find other ways to help her understand and get her on-board
maybe if you also show her patience she will learn how to be patient in return? that is really hard ... my younger brother is 20 i am 33 ... v.tiring! sometimes he just doesn't get it tho! easier as he gettin older now. i guess i don't get it either sometimes LOL

hope headache + other aches etc ease
***BUG HUG***

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/25/2009 5:23 PM (GMT -7)   
Thank you Lady, Lucy & Angel ~ I needed to hear what you said.

I hate that any of us feels this same way but glad we are here for one another.

Angel, after reading your post I got to thinking and we've had something going on every single weekend since the beginning of the month and last weekend I pushed myself way too hard and ended up paying for it. This weekend was going to be another busy one. We were planning to do this walk Friday, visit with my mom which lives about 45 minutes from me on Sat, then of course church Sunday, etc...... less today makes for an easier tomorrow makes perfect sense. We didn't do the walk and I took a weekend off from church too. I stayed home all day and did laundry and rested when I needed to, I guess that's just what my body needed!

My daughter is usually very understanding maybe she was just having a bad too. I am 37 and just get sick of my limitations, this was the one thing I grieved the most.

Thank you all again! :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/26/2009 7:31 AM (GMT -7)   
Stacie,

I had a real awakening this weekend while my 8 & 10 year old granddaughters were here for three days. I was mindful of getting too tired and took a nap every afternoon while they did "quiet activities", and my hubby and stepson helped me prepare meals and cleaned up for me,but it was still it pretty overwhelming. When I was raising children, I was young, healthy and energetic. But I realized that what I'm going through now is what you and other young moms experience every day. Wow. I don't even know what to say. I have a very easy life and lots of support. If I were raising children and didn't have the support and understanding that I do, I think I would lose my mind.

Setting limits is one of the most important things we can do for our health. Whether or not others choose to believe us is their problem. There are many times when I announce that I'm taking the weekend off. No explanations, and no apologies. After you do that for a while, it will become part of your routine. When we have a house full of kids and grandkids, and I start to feel bad, I go to my room and get in bed for an hour. I may take a nap, watch a movie, or read, and everyone knows that it's my signal that I need a break. I don't talk about how I feel, and I don't ever complain, but they get the picture and don't resent me.

I understand the grief you feel about your limitations. Do I ever Stacie. I'm glad you can vent it here because I know that if I don't get my frustrations out in some way, I'd go crazy. So vent away, girlfriend. It sucks.

But we can do it! At least we can keep telling ourselves that. :)

Take care of yourself Stacie.

((((Hugs))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/27/2009 8:39 AM (GMT -7)   

Oh sweetie, I'm sorry I just now read your post. I think we have all been through this. Sometimes it's very difficult for others to understand if they just look at you. If it wasn't for my oxygen I would look normal. God knows I'm far from it. Don't worry about your daughter kids(including my own) are selfish by nature. I think it's written in their DNA. Somthing like When mom feels the worst it's time to kick her around.

Besides it sounds like your hubby could have gone he just didn't want to. Ok I won't attack him. My SIL and bro went to the lake monday. They asked if I wanted to go. Yeah right! I want to walk down the beach lugging a 15 lb tank with the sun beating down on me. All she aid was I need to get out and blow the stink off of me! I am just convinced even if they try they don't get it. The more they don't get it the more they try to make us feel bad. I try to tell myself if someone in my family has to have this disease I'd rather it be me. All though I wouldn't mind if they got a really bad case of measles tongue

love ya


 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/27/2009 10:31 AM (GMT -7)   
Hi Stacie, I think sometimes we plan things and crap happens. This does not mean you are horrible. Yep our kids have disappointment because we get sick. Truly these experiences will teach her to be prepared for crap that will happen sad   in the real world. My kids all had to endure so very much with many trials in our lives. They are truly better people for it. I hope you will feel better soon and then you can plan something else. God willing it will work out. God lift your heart and keep you in peace. Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/27/2009 6:31 PM (GMT -7)   
Thank you Pat, Carol and Tammy ~

Pat, I think I will start doing what you do, not complain and just rest and take the weekend off when I feel I need to. Me and my hubby always talk every day at lunch and he's all the time asking me how I am doing/feeling. Sometimes, I just say fine and there are days when I am truthful but then there are times I feel like I'm complaining, so what to do? I am so glad that I have all of you here, without this board I truly don't know what I would do!

Carol, it doesn't matter how you are feeling, you always make me smile smilewinkgrin (thank you!) I'm with you, I wouldn't wish this disease on anyone, but a good case of diarrhea or measles would work tongue ... we're so bad! LOL Healthy people just don't get it, why would they? I think that is one thing I am thankful for, through all of my sickness that began in 2002 I have more compassion than ever before. That is one good thing that came from something bad, I sure there are other things. ..... I think that would be another topic.

Tammy, I love the scripture in your signature and thank you for your kind words of encouragement. You are right, these circumstances will teach my children and hopefully prepare them for things they will face down the road.

This is something we all have to deal with, we just do what we can and that will have to be ok! Thanks again... you all are the best!!!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

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