I had a real bad day yesterday so most other days seem pretty good in comparison. Will explain if we can get a discussion going.
I really never know how well I will feel most days. With a good nights sleep I still have good energy for 4-5 hours.
Hi khill,
It's good to hear from you, but sorry you're going through a rough spot. I do not have CMT, though suffer from several autoimmune diseases. I can tell you that all of the Ben's Friends communities have been very quiet the past few days. Seems everyone is down for one reason or another. I always hope that when things get quiet that it means everyone is well enough to go out and do things, but it's just not always the case.
I'm sure that others will also respond to you and be able to relate to what you are going through. Seems no matter what we have, if it's genetic, we all have some really rough days. Sometimes you can relate it to overdoing things, stress, falls or something, other times, it just makes no sense.
Hope you feel better very soon! I'm glad you posted!
Wishing you well,
SK
I woke this morning with horrible nausea and couldn't breath very will; felt oxygen deprived; Think my sinuses are swelled or clogged; when I sleep heavily from over doing the day or two before I tend to quit breathing several times in the night, don't move enough to change my positons,and wake with headache, neck ache,and nausea and High blood pressure. makes me extremely sick; I's had long days through the week babysititng my 2 yr old granddaughter and she loves for me to dance and play with her activily; I do not knowing I'm over doing it until I start fatigueing at the slightest activity; I also get up early before any one else to clean as the balance I have is affected with other moving around so wait til the go to bed and then clean or get up early and do it; again did not have enough recuperation for the activity level; I have CMT1X and auto-
immune issues as well as asthma, high blood pressure and many other secondary problems related to CMT progression.
Hi CM,
It's good to hear from you! You sound like a fabulous grandmother! They are so wonderful to be with, but man oh man, do they ever wear you out! We have been having a houseful of grand kids lately, they are helping us do work we can no longer do.They helped us with a yard sale this weekend, we need to have about a dozen more to get rid of all this stuff. We end up with all of the belongings of the departed, and it takes forever to go through it and sell the over flow.
The help is wonderful but cooking for them is a job that never ends, and lets not forget the laundry, if they're not hungry, they're thirsty! Of course the ice maker has stopped working, so that is just one more hassle!
CM, they determined years ago that my husband's heart stops working, and he stops breathing at times during the night, they implanted a defibrulator, which has helped him tremendously. They keep sending him home with new versions of the sleep apnea machine, but he just cannot get used to any of them.
It's amazing what you still do, but we all tend to just push on, what else is there? I surely could use a full time housekeeper/cook, how about you?
Nice gabbing with you, hope to hear from you again soon!
Wishing you well,
SK
SK said:
Hi CM,
It's good to hear from you! You sound like a fabulous grandmother! They are so wonderful to be with, but man oh man, do they ever wear you out! We have been having a houseful of grand kids lately, they are helping us do work we can no longer do.They helped us with a yard sale this weekend, we need to have about a dozen more to get rid of all this stuff. We end up with all of the belongings of the departed, and it takes forever to go through it and sell the over flow.
The help is wonderful but cooking for them is a job that never ends, and lets not forget the laundry, if they're not hungry, they're thirsty! Of course the ice maker has stopped working, so that is just one more hassle!
CM, they determined years ago that my husband's heart stops working, and he stops breathing at times during the night, they implanted a defibrulator, which has helped him tremendously. They keep sending him home with new versions of the sleep apnea machine, but he just cannot get used to any of them.
It's amazing what you still do, but we all tend to just push on, what else is there? I surely could use a full time housekeeper/cook, how about you?
Nice gabbing with you, hope to hear from you again soon!
Wishing you well,
SK
Thanks for sharing; Yes, I end up with loads of task the kids cannot accomplish b/c they work demanding jobs and do not do as I did, I would get up early go to bed later to accomplish but, they seem to need more sleep than I do even now LOL I had my twin grandsons age 5 years from Nov. Thanksgiving break til mid April b/c the school was moving to new building and they had delays in getting the playground done and governtment requires a place to go outdoors daily or kids cannot be in the building yet.
I kept them 24/75 days and sometimes a 6th day b/c single mom (daughter) could not pay a sitter to keep them; I cooked cleaned laundrey even went and bought a bed to accomodate them; now daughter doesn't allow us to see them b/c she got upset over us helping her oldest ( just graduated) to buy a car after the car she had helped her purchase turned out to be a lemon. It is sad, and hurts but would do it all over again, b/c it's about the grandchildren not her. I do too much, b/c it has to be done if I want to maintain what we have and no one else willing. But, yes, could use many more massage therapy session than I get, and a house keeper and yard man etc. but, we do what we must and keep going until we don't have it and then crash; Cmt for along time has givne me a stronger character to push to accomplish but, yes, it has definently aged me beyond my warranty! LOL
P.S. Have done a few garage sales many times to help clean out garges, againd b/c they did not seem to have time to get it accomplsihed. I'm like the energizer bunny keep going and going but batteries do not last forever. I have my down days that cannot lift my head off the pillow even by shere will!
Oh yes, I know about the crashes! I'm about due for a big one,but my just discovered blood all over the bedding from a nose bleed, so am working frantically with all of my laundry solutions to get it out! Blanket accomplished, now on to the sheets and mattresses!
Be back in a few...
I have a very hard time making plans for anything except doctor appts and even those are hard to keep. It is very frustrating if someone calls on Monday and says, "do you want to go for supper friday." I always have to say, "call me that day a couple hours before you want to go" and I could still change my mind at the last minute. I don't get many invites to go places anymore because I have had to change plans at the last minute. I am finally starting to be OK with that. I can't feel guilty anymore for letting people down. I have to listen to my body.
"Aged me beyond my warranty"! OH that is a good one! You hit it right on the head girlfriend! Ah ha ha!
You mention your sinuses, they have been cutting and bailing hay all around me and I cough, choke, and blow my nose constantly when this happens. I have some heavy duty allergies to indoor/outdoor mold, and the mold factor in the hay is probably what sets me off!
Hey braylin's gramma,
Yes, you really do, we all do, need to let go of any guilt. I think it's one of the biggest stresses we can put ourselves through. When chronic illness really buckles down on us, all dependability goes out the window!
SK said:
Hey braylin's gramma,
Yes, you really do, we all do, need to let go of any guilt. I think it's one of the biggest stresses we can put ourselves through. When chronic illness really buckles down on us, all dependability goes out the window!
CM said:
Yes, this is the main reason the have put me on total disability; I tended to push to keep commitments even though I did not feel well or up to doing things b/c I'd said I would, I would push and do it; Then crash and not be able to take care of my family. A 2 yr old, 4 yr old and granddaughter age infant at the time; Doctor told me I had more than my share of a load to just take care of the family and if I didn't want to end up in a nursing home in a very short time,unable to take care of my children and even myself ( dressing, and showering etc. ) I'd best give up my work and stay home to be able longer. Well, that made sense to me b/c I didn't want to give up my family to keep working a job.
SK said:Hey braylin's gramma,
Yes, you really do, we all do, need to let go of any guilt. I think it's one of the biggest stresses we can put ourselves through. When chronic illness really buckles down on us, all dependability goes out the window!
Guilt for something we have no control of is pointless! But, I can relate b/c so many years my frineds and family depended on me but, I now have to be smarter, and just because we can doesn't mean we should! Balancing that on a daily basis, b/c if we use ourselves up one day we rob from the next and sometimes more than that. We do not gain ground ever, it is a constant state of progression and changes on the downhill side!
I know how you feel. I had always been a multi tasking woman but now I am lucky to get basic chores done with maybe one special project. Today I need to make a casserole and clean. That sounds very tame,but now I hope I can do it. I blame CMT,but also the drugs. If I didn’t take them,I couldn’t do anything. Catch 22!
I set myself two tasks if they r equal in difficulty but different in ability it takes; IE; Vacuuming floors cleaning out refrigerator. Mopping floors, doing a load of laundry and folding. Making a batch of cookies and organizing a drawer or closet. PACE Practice Activity Considering Energy
Yes , those are the days I do as much as I can because the next few will be slow.
That Doctor really laid it on the line with you CM, but seems as though he knows you well enough to know what it takes to slow down the energizer bunny before it wears it's self completely out!
I very rarely have that kind of energy or drive anymore, but do overdo and over push for the grandkids, always have and old habits and wants are tough to break!
Like many of my friends here who are parents and grandparents, we want to do all we can for them, with them, while we still can, as we know that things can take a turn at any time!
Thanks so much for taking part in the group! Thank you ALL!
SK