Thanks for the replies. I am off to go clean the living room and probably spend the rest of my evening in bed.
My in-laws are like everyone else... they do not understand what I go thru. They think that just because I do not complain, not one of my strong suits, that I am normal and can do and should be able to do. FIL just does not think before he talks most times. But I believe most is said to me to be told to hubby.
But if he is saying it to hubby it is because I am not doing my part.
People seem to think I like to be in bed, in pain and when I am not awake I am asleep. For me when my pain meds do not work... sleeping is the only way to make the pain go away. Heck if it will make any of them feel better... I will go to sleep in the floor or even on their couch. Most times I do not get go enough sleep while in pain anyways. With my legs jerking and waking me up every hour or so.
I just have not been having good sleep lately. Since that fibro flare I had. My legs have been jerking and waking me up and my neck muscles are tensing up again, and makes it hard to sleep.
But other than that I am ok. Just been disgusted with myself and trying to psych myself into doing things I should be doing.
Joonie, I had to get over my own guilt at not being able to do things others can and not having a job. Even though I am on disability, (and believe me, it is a tiny amount of money) it did not stop me from feeling like I should be doing and contributing more. It does not help when others look at you on a good day and say they can't even tell you have a disease.
You just have to find that peace within yourself, Joonie. Do what you can, when you can and don't punish yourself for not being able to do what you can't.
Those that do not have this disease can not understand, how on days you can pick up a cup of coffee and cry from the effort of it, you can not be expected to clean the house much less find a job.
Your job, Joonie, is taking care of your health so you can be there for your children and others who love and depend on you.
Dry you tears, Joonie, and be proud of who you are.
Hey Joonie bug...what they been saying to you? Only you know what you are capable of. we all have gulit about burdening our loved ones with our illness and the extra burden of having them do things for us...I was going through a bad flare this last few days and i have been a sorry site to be around..im coming out the flare now and am trying to do little things...all little things help..whether you just put a load of laundry on or you cook a small meal or even make a sandwich, or a cup of coffee, read book with your son or draw pictures with him sat on the bed with you. You need to be firm with your daughter..she probably just carries on ignoring you coz she knows you wont follow up on it...lay down the law with her about picking up and keeping her stuff tidy..take away her treats or her favourite game until she agrees to help. Are there no support groups near you or a mother and toddler group you could go to so your son could play with other kids while you sit and rest and chat with other mums..it might stop him from tearing up the house..maybe hes bored..it will also get you out ( not on days you cant walk) and things like this take your mind off of your pain...if you focus to much on this and you lay there thinking about how much pain you are in every day it becmoes the whole focus of your life and you will become depressed and feel hopeless...http://arthritis.about.com/od/family/ht/parenting.htm
I found this joonie, it might give you some new ideas and help with your daughterWhen my children were young, I didn't have RA. Now though, I'm babysitting my granddaughter and I didn't really know how hard on me it was going to be. She's 15 months old and into everything! Like your son, she makes messes all over the place. I try to limit most of our time in one room that she messes up and that helps a bit...but still...it gets very frustrating. I really feel bad for anyone raising young children while having RA. I'm sure that it's not just the messes to deal with while feeling sore, but guilt I would imagine is there as well.
I don't know how things work where you are, but would you be able to set up an appointment to talk with a professional? Maybe on ways to better cope with all of this? Possibly talk about how you're feeling? I think that would really help. I know though it's difficult to get someone to take you to any appointments, but sometimes these things are important.
Don't let it get you down, Joonie.
I am better now. I tried to clean the livingroom up, and then I took a break. Now my left leg is jerking all over the place. But I am going to go back and finish the livingroom.
I just get tired of it all sometimes.
Thanks for all the replies. I just need to be smacked upside the head sometimes.
Before I did not know when not to overdo and now... that I seem to have figured out how not to overdo... I feel like I am doing nothing at all, because I can think of all the things that need to be done and I know I would never be able to do them.
Just like when I cleaned the bathroom and about killed over from more problems than I had before I started. LOL! What? For some reason... I felt that the walls in the bathroom needed to be wiped down and scrubbed. *shrugs shoulders*
Joonie..do you get a spray foam in the US..we get two types here, one for bathrooms and one for kitchens..you spray the shower with it and the sink, leave for 10 mins then go back and rinse...a nice gleaming shower..we also get a spray and when you finished showering you spray the shower and the tiles, no need for scrubbing or rinsing...its all i use and my shower is always shining...there are lots of products out there that cut down on elbow grease but that are also good for the enviroment tooOh another thing I learnt when my kids were little was to have one bucket of toys in the living area and the rest in their rooms, each week i would swap over the bucket in the lounge and then they didnt get bored. Water based finger paints are good as they are fun but dont stain and no mess..also we get bath paints here and when my kids were little i used to put them in the bath with the paints and get a comfy cushion and sit on the floor and watch. salt dough is also a good one for little kids and the exercise for your hands if you join in is great....i love squishing dough between my fingers.. what ever you do just have some funI have not been down the cleaner aisle in so long... makes me just want to spray my house down with lysol LOL!
I do not clean the shower... hubby does when he feels it needs it, kinda scary that thought LOL! I use to be able to clean the tub with my feet, but not anymore since now we have a shower.
Ya try to adapt changing from tub to shower and then in the process lose your ability to clean. I cannot scrub, because of my right wrist, it will not bend but one way and well... it is not the scrubbing way LOL!
I just got off the phone with hubby again. I asked him if he thought I was lazy. He laughed at me. I asked him if that was a yes or no. He said no. I said... well... I remember a time when you called me lazy and I cleaned house and now that I do not do much house work you do not think I am lazy.... how is that? He said bye. I said no bye... what changed? He said do I even have to tell you? I said no, I guess not.
He better ask the dr if his MIA lung Dr sent his lung biopsy report to him like he said he was going to. Hubby has a Drs appt today. Maybe they will not find much wrong with him. He already does not want to take his inhalers.
Joonie,
I have young children and am young with the disease as well. It is tough. I am not going to say it isn't, and others contributing with negative feelings doesn't help in the least. I went through a very rough bout of depression here lately because I felt worthless sometimes. It is really rough to come out of! The most important thing is that you remind yourself, that these people have no clue. And you push through it to make it through the day for your family and yourself. I find that on the days that I am the worst, I stay inside and try to do small thing that I know will impact my son the most or help me just get through the day. On the days that are good, I work like a banshee to try and get it all done, before a bad day comes along (or I take extra prednisone to help me through (shh)). It is not easy and if you have sever RA, you know that. But we only live once and I just tell myself, this is not going to beat me! You take the time you need and offer time when you can. you will make it through!Hope hubbys report comes back ok. Im terrible though joonie and this is no dig at you but when i feel like you do and I cant walk and feel exhausted I do the opposite of you and not coz im a super human , its just what make me feel better...I will make sure i clean the house and cook dinner, i refuse to even look towards my bed...i call a friend and have her come over and help me if i just need the company and my reward to myself is to sit down on the couch, and think..."yes" I didnt let it beat me today...I def. do have days as well when i think "its just not worth it" and i grab my book and spend the day laying around. Thanks for the reply, schell. I guess I am just feeling bad because I was doing well, and now... that the Remicade has wore off... it is kinda a let down and makes you feel is this how it is going to be all the time. Have one good month and then hope you last until the next infusion. I hope this all changes when I get to taking the Remicade every 5 weeks, soon.
I like feeling better and doing better and actually thinking I can do and not think of what I cannot do. It is kinda hard to be able to do something one month and then a few weeks later spend most of your time chugging pain pills, muscle relaxers and cuddling up with the heating pad and depending on someone to button your pants for you.
It is kinda like the grieving process all over again.
Joonie-Just wanted you to know I'm thinking of you. Each and every one of us has had someone treat us unfairly because of this disease. The "but you look fine" reaction. Whatever...I just vent to my husband, and eventually I get over it.
I don't know the particulars about your situation with your daughter, but you may need to gather enough energy to show her who's boss. We all have responsibilities in our families. If she can't help simply because you have asked her, than maybe a little punishment is in order. The hard part is sticking to your guns. La
I took all I can from her. I took her gameboy and games. I even told her when she does a house chore completely... that I would give her back one of her game cartidges to look at. I will not even let her get on her webkinz. She does not care.
She did help me with the livingroom a little after I went and rested. I told her all she had to do was pick the stuff out of the floor so I could vaccum, and she kinda done it. Then she asked if she could finish her book report. So... that was that.
I am feeling better. And I did not even have to bother my mommy with it all to feel better LOL! She was napping when I called... so...
joonbug, I'll confess I'm too exhausted to read this whole thread, but no it's not all in your head. I know what you mean, and I question myself as well, but then I have times like yesterday when I couldn't get the front door unlocked for the UPS delivery guy or today when I wanted to try on a pair of jeans and couldn't undo the button. It makes me just want to cry. For most of us I think, there are days when it is somewhat better and days when it is somewhat worse. But just because it's not consistent, doesn't mean it isn't really there. Just do your best without pushing too hard. Hugs!Joonie,
I haven't known you that long nor have I seen pictures of your hands or knees but please don't beat yourself up. RA is doing a good job of that already. It steals your joy if you let it and suck the life right out of you. the more you worry about things the worse it gets. it loves for you to be stressed out.
some are responding perfectly to their meds and some are even in remission so they may not know the extent of your limitations. My guess, it is not all in your head. You know your body. It is probably wise to pass on some of the things you have. If you don't take care of your kid's mom then who will be here to take care of your children.
This is the RA life and it is ever changing, constantly adjusting, the works, and if I had my way, I would put a different spin on how it is explained to us and how we treat it and in a way we know what we are in for from the word go, and what is real, most try to make you believe you will go into remission if you just do what they say. that might happen but you need to know what if it doesn't happen, then what and what you need to do to prepare for possible disability. I have had all sorts of people and doctors tell me about my body and only I know about my body and what its limitations are, a very long story.
but there are times when I feel entombed in my own body also. my drive and energy still lives within me but I am very limited in movement and there just isn't anything to be done about that at this time. so you have to slow it down, pace yourself, be creative and find ways to do the things you want. you may not be able to work a traditional job maybe something from home or part-time or start a business of your own but raising children is a full-time job in itself and huge contribution to your family and anybody who thinks otherwise is living in la-la land..
so go easy on yourself. take care.
Sorry I'm late but I agree that you know what you can and cannot do. It's hard enough to have the mom guilts when you don't have RA. I had days with the kids pre RA where I was just too tired from taking care of all their needs to get to the other kinds of things that needed to be done around the house. All in all what NEEDS to get done gets done. There is always tomorrow for everything else. Don't beat yourself up.firm sit down and say "In 10 min, I'm going to do....and you are going to do......, and
then when we get done, we'll (do something fun)" I have twins and had to lay down
the law. It's not a choice the kids have, everyone in a family has to contribute.
Truth be known alot of us have probably asked this question of ourself. I say NO it is not all in your head. It is normal to question yourself and let yourself be filled with self doubt. Push that out of your head . Hang in their.