Still Learning | Arthritis Information
I have realized I still am in the dark about my health. I thought I had it all figured out, was able to deal with all of it, after learning to cope with my new limitations and adjustments made and all. Then I get fibro, and now I have to start all over again in the coping, and adjusting and trying to decide which is what and have many new experiences and old ones on top of the new ones.
It just seems like a never ending cycle.
Pain I can deal with, swelling I can deal with, stiffness I can kinda deal with and limited ROM I can kinda deal with. But there is only so much at one time I can deal with and only for so long.
It wears me down mentally, and physcially, but the mental part is the worse. I just am not sure if I can come to terms with everything that is going on with my body and the lack of being able to function mentally.
See before I still had my mind functioning like it normally did, even though my body did not function well and was tired. I was able to think a complete thought, and it was easy to cope when my mind was functioning properly. Now I am just scared of how far this is going to go.
It is making it hard for me to understand or comprehend exactly where my health is headed. I feel hopeful it will get better, and it has gotten better, but I am still scared it will pick up speed and get worse again or I will have more to add to my list of diseases that are just the same as what I have, but causes are different.
I am sure once the Remicade and all has time to work, my mental function might return. I just feel dumb sometimes because of how much I have mental blocks and forgetfulness and just mentally tired.
Hi Joonie, I do not blame you for feeling this way. I have RA and FMS, but my RA is by far worse than the FMS. Plus within the last few years things have gotten bad, and mentally speaking the last few months. I actually feel like I can really understand your thoughts at this very moment. Up until a few months ago I was just dealing with my pain and severe swelling. Now doctors are talking about knee surgery and this scares me because from what I have read once I start this process I will have to continue it. I look at my life and the plans I have for it (I live in Germany and currently am supposed to take a job in france for the summer and travel more of Europe). I see all the things I have planned for my life and how each one slowly begins to fade away. I look at my friends who have little to no health problems and it makes me angry. I try to eat better to keep inflammation at bay but when I feel terrible, all I want to do is eat terrible food.
I think depression is a major aspect of this disease because of how various it can be. One moment you are fine and your joints feel great, then you make one wrong move and then next thing you know you are swollen and in pain. I have problems with walking, bending, biking, and basically cannot do any kind of work out at my gym.
I am constantly worried just like you as to where my health will stand in the next 10 years. I just read on one blog that a person aged 35 using a cane...a cane!!! It just doesn't seem right, that is so young. I look at myself and think jesus is this where I will end up?
But I guess what I am so badly trying to get at is please try to keep your hope up. I don't want your health to decrease anymore than myself or anyone else I know. But just try to stay level headed and realize that there are so many RA-er's out there that relate with you.
I can sure understand where you're coming from Joonie. To me, not knowing what lies ahead is always the scariest part of trying to deal with my RA on a daily basis. Remicade has worked for me and has truly turned my life around from constant pain and discomfort for the last 5 yrs. I guess you could say I've been in a chemically induced remission. But after 5 yrs. I find myself not feeling as well as I have been and I wonder if the remicade has worn out it's usefulness as far as I'm concerned. Even if it has, I am the eternal optimist and I feel something else will take it's place to enable me to live my life to my fullest capabilities.
Joonie, I am the eternal optimist because I know and am living proof that really bad situations can turn around. By the time I was 33 yrs. old I was pretty much bedridden and unable to walk more than a few steps at a time due to the destruction of my knees and hips from RA. Depression was a fixture in my life and the reality of never being able to walk again was there when I woke up in the morning and when I finally went to sleep at night. It's very lonely when others including your loved ones can't understand the things you're going through and even worse, you can't understand why this is all happening to you.
My life was turned around by joint replacement surgeries and I was able to live a somewhat normal life again. Of course "normalcy" changes quite often and you learn to adapt. Like you, pain, swelling, stiffness, loss of ROM, these things were all so much a part of everyday life that I just didn't give them a second thought.
I know it's easy for me to say Joonie, but try to have faith in the docs and meds and treatments and know that there are many, many success stories to be told and one day you'll tell yours. Even though I am limited to the things I can do these days, I always try to focus on the things I can do and not worry about things I can't do. I know with your JRA, you've dealt with this your whole life. I was dx'd at 26 yrs. and I'm often asked if I remember what life was like before then. I honestly don't.
Hang in there, you'll be okay!
learning what you dont know is an important step. As you learn to take better control of how you deal with the disease I suspect you will begin to feel better. Once you become more comfortable with knowing what is going on and dealing with the medical community a lot of the stress will melt away.
Thanks for the replies.
Yeah, you are right buckeye. I have adjusted before to going thru this process of getting better, it just takes me some time to go with the flow a little more.
just hugs joonie
Copyright ArthritisInsight.com