I am trying…
AnonymousJanuary 7, 2008 at 10:59 pm
I haven’t written in a while. I am hesitant because I don’t want to sound negative, whiney, or discouraging. As many know, I had a rough 8 months this past year and then in the fall I started turning around in both physical and emotional ways. Right before Christmas I started to backslide. Weak, fatigued, unable to do much except lay in bed or be on the couch. I have been continuing to take the methotrexate which I thought was doing something but now I am feeling dubious with this recent “relapse”. In between this I have been struggling with this sleep apnea diagnosis and trying to get used to the CPAP which is only tolerable for about 2-3 hours at most. So I am still not getting good sleep. I also have been having major lumbar pain and saw my spine specialist who said I needed to wear my AFO’s more often. Now he is sending me for an MRI as I have this incredible pain regardless of the AFO’s or not. I am still going to OT and friday she told me I had to back off because I am getting dequervains tendonitis. She is going to put me in thumb splints on wednesday. In the meanwhile I joined a fitness center that has a therapeutic salt water pool. I am trying really hard to balance the concept of resting but still moving. So today for the first time I did a water fitness class with about 15 seniors who were able to do this way better than me. I just don’t have the strength in my feet and legs to do it and it was shocking to me.
I am really trying you guys, to go with this whole thing, be grateful for what I do have, adjust, do what I can, be positive, look at the bright side…etc. but I guess as I look at all of the medical devices I have to use just to be alive and I look at other 40 year old women, I get really depressed. I feel really old and beaten. It makes me feel like I won’t be able to live much longer as my body won’t allow it. I am sorry to sound so dark and down, but I just am so depressed. I am so tired of fighting just to go through another day of struggle. Sorry. So sorry. I am not asking for anything from you, but thanks for listening if you read this. I am happy though to hear other peoples stories and appreciate what has been offered here. I do think of you often.
January 7, 2008 at 11:16 pm
I am so sorry things are not going well. Can you try ivig in conjunction with the methtrexate?
You are right, it seemed as though you had turned a corner and accepted what you needed to do to make things work for you. NOW, you have hit a bump in the road and made a slight detour, but you will find your way back to that road that made you happy not long ago. I know it. If there is one thing this stupid dumb *** disease does, is it makes you guys extraordinarily strong. I see it in Kevin each and every day and read it in all of your posts. I wish you a better day tommorrow.
Dawn Kevies mom
AnonymousJanuary 7, 2008 at 11:34 pm
So sorry to hear about the tough time you are having. I know the feeling, as in the last four months, since being dx with cidp, i have been through an emotional roller coaster and continue to be up and down.
I’m on a walker, occas w/c and can stand in one place for less than one minute.
I also on many days can only be in a chair or bed and my husband brings things to me.
I’m making every attempt to stay focused, do what i need to do, do the exercises they have given me to do and to stay positive and hopeful for a remission.
I can understand how hard it is and at times to want to just give up.
Hang in there and will say prayers for you. Hopefully at some point this year will be better.
I had my second round of ivig and it did help my hands and arms for about ten days. I go for my third round of ivig next week.
please we are here at any time for you
AnonymousJanuary 8, 2008 at 12:26 am
I thought a big mickey hug might help right now. I know how it is when you can’t sleep, my sleeping patterns change so often, I just have to manage with what sleep I can get, which isn’t enough. My problem is physical sensations, a pillow between my legs help, but nothing works for my arms and the only positions I can lay is on my side. Sometimes I try too much to rebuild muscle strength and I start to feel like what’s the use and that’s when I need to back off for awhile, not try so hard and just do things to maintain.
AnonymousJanuary 8, 2008 at 6:34 am
I’m with you Linda, sometimes I look at my life and I marvel at how different it has become in such a short time, not necessarily for the better either. I have to work hard to find those silver linings I spout about in my posts and some days I just can’t find anything to be happy about. I do keep trying though because although I don’t know if I will ever be “normal” physically again with or without appliances I do know that the only thing I can control is my attitude. Really, it’s the only thing I have control over now days and sometimes even that is tenuous or impossible when I’m exhausted and not getting enough sleep. It sounds like you are doing what you can right now to manage your sleep patterns so the only thing I can suggest is to have a little more patience with yourself and try to recognize when your depression is related to exhaustion vs. being bummed out about your situation. And I’ll give you the advice my husband gives me every day that I frequently ignore – nap more, even ten minutes can reset your brain and change your outlook. I mean, like, what else are you going to do anyway? I do get frustrated with sleeping so much because I feel like my life is slipping away in a fog of exhaustion and sleep, but on the other hand when I am a “good girl” and try to nap regularly I find that I don’t need it as much.
If you can’t nap, then try to find a place where you can sensory deprivate for a half hour – turn a fan on, lie in the dark and try not to think about anything at all. When I can’t nap I’ll at least do that and it seems to help.
Take care Linda, hugs all around, sorry if I whack you in the nose while trying!
AnonymousJanuary 8, 2008 at 9:46 am
Its not fair that we try so hard only to go backward at times. I agree with Julie about the attitude. I know that is easier said than done too. We should never be “just sastisfied” with our present state or we will never advance again. You gotta keep it up and keep trying! I know that you are doing whatever you can with OT and the salt water pool sounds fantastic. When I mentioned to my physician that I was tired of taking naps he said it was better to “work” myself to be tired and nap 3 hours than just sit and rot away but be awake all the time. That wasn’t getting me anywhere, so I still nap everyday hoping the extra sleep will give my body more time to repair itself. Hang in there girl, I know the “40” old feeling and don’t like it either! 🙁
AnonymousJanuary 8, 2008 at 11:15 pm
Hi Linda: At the beginning I could only wear my mask a few hours a night but gradually it grew easier until now I miss it if I can’t wear it. It is worth trying to do because sleep apnea is actually a deadly disease that you should protect yourself from.
I can’t endorse the idea of fighting to improve. Our body is doing its best to heal the nerves and for some it works better than others. Be kind to yourself and try to enjoy being weak-it slows life down and gives us a chance to experience things we might miss if we were in our ordinary way of living. Hoping and fighting have their place, but coming to accept our condition does not keep us from healing-it allows us to enjoy life as we are healing. I am near my third year and have made no progress in two years or more. I know that I might improve but I might not as well. I do what I can but am trying to be satisfied with what life has given me and, in fact, am happier all the time. I have constant pain to work against and keep in check, and fatigue and weakness that keeps me from doing work I love, and my hands are much worse than a year ago, but somehow I am happy. Be as good to yourself as you can-rest, nap, read, live as you can and don’t worry about the rest. I am not discounting the pain and frustration you must feel-we all do probably-but instead of looking at tomorrow as one more day of struggle you might try to look at it as one more day to grow-because, as Dawn said-this disease helps us to grow very strong and to gain wisdom we might otherwise not have found. As my wife likes to say, GBS is AFGO. (Another f—— growth experience) Jeff
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