Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Bad days They are part of the system. It is not so much anything else but after a while it takes less and less to make a good day I have not found Rehab any help. I just get through it. I may not move for a long time and it is hard but I will not allow this disease to cripple me. I do not always win that argument by I try. Coping is on good days enjoy. I cannot tell each person about bad days. We each have to find our own solitude and comfort. I like a dark room and quiet. This is not possible for everyone. Randy " Bad " days > How do you handle " bad " days ? Days when you wake up with no > energy or a " killer " headache that takes you all day to get rid of ? > In addition to NF2, I have arthritis. Between the two of them, as I > become older (I'm 45 yo now) I seem to have more " bad " days. > Do you have outside help ? Is Dept. of Rehab Services any > help ? A different dept. or service that helps ? If you have outside > help, is there a cost or fee involved ? > I just had two and half days, " bad " days where I didn't get > anything done and stayed in the same clothes. I just hate it when I > have days like that ! I would love to hear how other people cope > with this. > I don't know how to cope except rest when I can, and get > things done when I can. But when I have a " bad " day or days, I feel > guilty as all get out that I can't take care of my family much less > myself. > Sorry to vent but would appreciate any advice/suggestions. > Thanks. You all are a lifesaver. > K. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Randy I go to a heated pool and exercise in the water. Pool is closed until Monday for renovations but I am gonna be the first in line when it opens!!!! Can do so much in the water and it is not a strain on or body. Feels so good to be able to move without pain. HUGS Marnie At 08:55 AM 7/13/02 -0400, you wrote: >Bad days >They are part of the system. It is not so much anything else but after a >while it takes less and less to make a good day >I have not found Rehab any help. I just get through it. I may not move for a >long time and it is hard but I will not allow this disease to cripple me. I >do not always win that argument by I try. Coping is on good days enjoy. I >cannot tell each person about bad days. We each have to find our own >solitude and comfort. I like a dark room and quiet. This is not possible for >everyone. >Randy > " Bad " days > > > > How do you handle " bad " days ? Days when you wake up with no > > energy or a " killer " headache that takes you all day to get rid of ? > > In addition to NF2, I have arthritis. Between the two of them, as I > > become older (I'm 45 yo now) I seem to have more " bad " days. > > Do you have outside help ? Is Dept. of Rehab Services any > > help ? A different dept. or service that helps ? If you have outside > > help, is there a cost or fee involved ? > > I just had two and half days, " bad " days where I didn't get > > anything done and stayed in the same clothes. I just hate it when I > > have days like that ! I would love to hear how other people cope > > with this. > > I don't know how to cope except rest when I can, and get > > things done when I can. But when I have a " bad " day or days, I feel > > guilty as all get out that I can't take care of my family much less > > myself. > > Sorry to vent but would appreciate any advice/suggestions. > > Thanks. You all are a lifesaver. > > K. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 It is alright Often I have had to use the crew to sound off and get through my bout with depression We, meaning the whole crew, are so lucky having each other Randy " Bad " Days > Thanks to everyone who posted in response to my question !! A > zillion thanks ! Personally, to cope, I take pain medication, sleep > when I need it, and eat or drink when I feel like it. I am SO very > blessed that my husband and sons understand when I have days like > these. They don't get upset, yell or make me feel guilty for not > doing anything. > I lay the guilt on myself. I know in my head that this NF2 and > complications are not something I asked for. I know in my head that > the resulting complications, including bad days are not my fault. > It's just that the " good " days spoil me because they are much more > often and I am able to do everything I need to do and want to do. > Actually, I DO still lead a busy, productive life. I just let > the " bad " days get me down too much. > I knew you all would understand my frustration and helplessness > about bad days. Thanks for lifting my spirits !! I will remember all > your kind words and encouragement the next time I go through a bad > day or bad days. God bless all of you ! > K. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Hay , I do not have NF my son does and bereave me he has some really bad days , BUT my point to make here is I do too have bad days I have stenos of the spine + osteoarthritus and osteoporosis + I had my waste broken lifting my son ... there are days I give up cant move and don't want to when it feels better I do what I can.....don't feel guilty either as they all know I do what I can... hugs Lois " Bad " Days > Thanks to everyone who posted in response to my question !! A > zillion thanks ! Personally, to cope, I take pain medication, sleep > when I need it, and eat or drink when I feel like it. I am SO very > blessed that my husband and sons understand when I have days like > these. They don't get upset, yell or make me feel guilty for not > doing anything. > I lay the guilt on myself. I know in my head that this NF2 and > complications are not something I asked for. I know in my head that > the resulting complications, including bad days are not my fault. > It's just that the " good " days spoil me because they are much more > often and I am able to do everything I need to do and want to do. > Actually, I DO still lead a busy, productive life. I just let > the " bad " days get me down too much. > I knew you all would understand my frustration and helplessness > about bad days. Thanks for lifting my spirits !! I will remember all > your kind words and encouragement the next time I go through a bad > day or bad days. God bless all of you ! > K. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Because of my wifes FMS and arthritis we keep the pool at about 92 to 93 degrees otherwise it gives her pain to swim. Feels like bathwater to me but is great for her. Thank God for solar heat on the pool. Mikey " Bad " days > > > > > > > How do you handle " bad " days ? Days when you wake up with no > > > energy or a " killer " headache that takes you all day to get rid of ? > > > In addition to NF2, I have arthritis. Between the two of them, as I > > > become older (I'm 45 yo now) I seem to have more " bad " days. > > > Do you have outside help ? Is Dept. of Rehab Services any > > > help ? A different dept. or service that helps ? If you have outside > > > help, is there a cost or fee involved ? > > > I just had two and half days, " bad " days where I didn't get > > > anything done and stayed in the same clothes. I just hate it when I > > > have days like that ! I would love to hear how other people cope > > > with this. > > > I don't know how to cope except rest when I can, and get > > > things done when I can. But when I have a " bad " day or days, I feel > > > guilty as all get out that I can't take care of my family much less > > > myself. > > > Sorry to vent but would appreciate any advice/suggestions. > > > Thanks. You all are a lifesaver. > > > K. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Mikey, Glad to see your wife who has FMS and arthritis as I do likes the water temp high. My husband thinks it is high but actually we had a new thermostat installed and it was set to what became 98 degrees, too hot! Does she feel great after using the pool and exercising in it? I sure do. Regards to you both. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Marnie, I,too, find the pool is terrific for an exercise program and for making me feel better. Anne, on the other hand, has to be dragged to the pool. Too bad for her. She is missing out. Keep swimmin'. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 EVERY DAY is BAD day for me !Just VENTING Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 , Sorry to read of your bad days. I, too, have arthritis and fibromyalgia. I went through a Pain Management program with was 12 meetings. Basically, they tell you to give in to the flare-ups, because to fight them is to cause the body stress and that increases the inflammation. Also, they recommend journaling, breathing exercises, and at the very least isometric exercises. Do you do any of this. It really does help. Hope it is a good day tomorrow. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Thanks, Randy. You are So right ! Each of us are blessed to have a place to come to, people to come to who understand what we're going through. Hugs to you my fellow Crewbies ! God bless you. K. > > It is alright > Often I have had to use the crew to sound off and get through my bout with > depression > We, meaning the whole crew, are so lucky having each other > Randy > " Bad " Days > > > > Thanks to everyone who posted in response to my question !! A > > zillion thanks ! Personally, to cope, I take pain medication, sleep > > when I need it, and eat or drink when I feel like it. I am SO very > > blessed that my husband and sons understand when I have days like > > these. They don't get upset, yell or make me feel guilty for not > > doing anything. > > I lay the guilt on myself. I know in my head that this NF2 and > > complications are not something I asked for. I know in my head that > > the resulting complications, including bad days are not my fault. > > It's just that the " good " days spoil me because they are much more > > often and I am able to do everything I need to do and want to do. > > Actually, I DO still lead a busy, productive life. I just let > > the " bad " days get me down too much. > > I knew you all would understand my frustration and helplessness > > about bad days. Thanks for lifting my spirits !! I will remember all > > your kind words and encouragement the next time I go through a bad > > day or bad days. God bless all of you ! > > K. > > > > > > Quote Link to comment Share on other sites More sharing options...
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