This happened last Friday. I went with MIL to town Friday, just to get out of the house, and for son to get to see his granny, because he does not get to see her that much thru the rest of the week.
So, I am not totally sure how we got on to my "health", but MIL was telling me I needed to do more things. She said if I do not use it, I will lose it. I am sorry to tell her... I have lost it, more than one way
I do not really lay in the bed that much... It just seems like it to her that I am always in the bed when she comes over, but that is because it is cooler in my room, and I can have the fan directly on me. I stay in my room, because I do not want to watch cartoons, and if I sit up too long, my neck/back/shoulders start to hurt, so I have to rest them every so often.
Anyways... it is just annoying. I mean... I would love to be able to exercise and lose my weight, and do the things I need to do.
I just told her about some of my symptoms as to why I have not been doing what she thinks I need to be doing. I told her about how when I do not have swelling, my joints seem to pop out of place and how painful that is. I even told her about how the new muscle relaxer is making me even more fatigued than usual. I even told her about what my GP said about my neck and back, and how the muscle relaxer is used for Injury to intervertebral disc. Plus, I also explained to her that I am not on the right meds to help me do better than I am right now. I told her about how I cannot take MTX, Arava, and that I am hoping that my new RD can give me something to take with my Humira, so I can get of this pred and hopefully do better.
I think it kinda helped her to understand that I am doing the best I can right now. I am not a complainer, I woluld rather not even go there. But it seems like if I do not complain about my aches, pains, problems that I am having then, to them I am not doing so bad. I have a lot of things wrong with me, I just pick and choose what I am going to let my family know about. Until I go to a doctor to tell me what it is.
I think everyone thinks that the Humira is suppose to "cure" me or even make me "normal". To them if I am not like I was in 2005, then I am "better". Of course, I am better, but I am not out of the woods yet. I have a lot of symptoms, not sure if they are all RA related, that needs to be addressed. I still feel like at any time I can revert back to the way I use to be. What if the Humira decides not to work for me? It already does not seem to do as good of a job as it use to. I am only getting like 3-5 "good" days a week, and most times it is like every other day is a "good" day.
A "good" day to me is little to not much swelling, I can move my fingers, not much pain in major joints, my knees seem to be ok, I can walk a fair distance, I do not gel as much, and I feel like I can keep up with hubby (which I know I cannot).
Today is not a good day. Today is injection day. I have not had a good day since last Thursday.
As if you don't have enough to be frustrated with. It must be a lot harder to get through when the people around you think you could be doing something more. Hopefully your mil will take to heart what you told her and be more supportive from here on. Maybe she really just didn't know. I guess alot of people just don't understand RA. I only knew of it, but nothing really about it, before I was "stricken". Either way, I sure do hope you can get on the right med combo to make you feel better. It sounds kinda tough to be joonie, and still you have this great, unique personality that brings out the best in the people around here. Impressive.
Linda
Joonie- I too spend a lot of time in my bed, not because I am lazy or cant be bothered to get up, its because its where I can be at my most comfortable. By laying down it takes a lot of presure off my hips and lets me relax my shoulders , feet and knees. I dont have the life I used to and cant do the things i would like to but I do what I can and when I can. If I have good days I go mad and max out my energy ( i know this is wrong) but life is for grabbing so I grab when I can. It sort of makes up for the bad times. Sometimes we get it in our minds that everything is too much trouble and we are so tired to try, thats when we need to push our minds to try something new thats within our limit. I supose it is a life changing disease but its about adapting things to suit us.
I hope the Humira kicks in soon and you feel better
Now... that is all I feel. I think last week I had 3 good days and they were not even in a row. It was like one day I felt like doing something and then the next day I would plan to finish what I started the day before and then I was hurting too bad to even get out of the bed.