A little about the week I have had
I can't believe it is already Saturday. I was going to write in my journal more often, I thought about it but never had the gumption to do it.
I did leave the house about a week ago & went with my daughter, Misty, to a larger town about 18 miles away. The town I live in has less the 1000 people so not too many shops. We had a very good day. I didn't go into every store we went to, Misty had some errands at these & I just sat in the car to rest. The ones I did go into I really enjoyed. It was fun looking at all of the clothes for sale. I enjoyed looking at them all & dreaming of wearing them, seeing what I would have bought if I was still working. I did purchase one piece of clothing for myself....drum roll.......Pajama bottoms, yes that's what I bought. "sigh!"
This week my sleep schedule has been rebounding badly. From no sleep to lots of sleep. For example, I went to bed at 8:00 pm Thursday night & woke up at 7:00 pm Friday night. I did that twice this week, then I can't seem to sleep for about 20 hours, then I sleep 20 to 24 hours. When I get up from sleeping the long hours I sometimes feel really good the first half that I am up then I get very sick & lay on the couch for the second half of the time I am up. I try to wake myself up with an alarm but that never works. I have always had this problem since I got CFS. I read somewhere that this is a CFS symptom but rare. Do any of you have this? Is it that rare or is it just the nature of the illness?
My family: We are not a well family by any means, we each have our issues & I think that helps us to really relate to each other. Misty, my daughter, has MCTD this is an illness that has a combination auto immune diseases including Lupus, Schleraderma, Dermatomyositis & Rhuematoid Arthritis. She also has Fibro & migraines. She is my hero, she may be in pain & sick but she takes good care of her two kids. I help when she is really bad but for the most part she does it all. Deylan, my 15 year old grandson, is a heart patient. He has had 6 surgeries on his heart, including 2 in New York City for a developing surgical technique, whien he was 2 1/2 yrs old & the youngest person to get this procedure. He has had a pacemaker since he was 6 months old. We homeschool him as best we can. He is a very good boy & seems happy with his life. Emily, 11 yrs old, has a seizure disorder. She had about 1000 seizures per day before she got on a medication, according to her neurologist. We thought she was our healthy one because the seizures were silent, we just noticed that she would stare alot or just seemed not to listen, concerned her Mom took her to a Neurologist & with testing discovered the seizures. She is doing much better since she is on the medication. About 6 months ago we found out through blood tests, that she is allergic to wheat, milk, pork & bananas. We now make her Almond milk. I actually really like it. Misty makes her bread & all of her goodies like cake & cookies, doughnuts & buns. She can't eat hot lunch anymore so we have to make her a lunch to take to school with her. I use as much of my energy as I can helping with my grandchildren & it gives me a feeling of accomplishment. I was never one who wanted to be an empty nester, it took time to get used to living with these three but I am happy I do.
Well, almost time for bed so I will quit here. Hope everyone is having a good day today. It is 8:00 am & I am going to try to sleep. We'll see I guess. Hugs, Denise
I did leave the house about a week ago & went with my daughter, Misty, to a larger town about 18 miles away. The town I live in has less the 1000 people so not too many shops. We had a very good day. I didn't go into every store we went to, Misty had some errands at these & I just sat in the car to rest. The ones I did go into I really enjoyed. It was fun looking at all of the clothes for sale. I enjoyed looking at them all & dreaming of wearing them, seeing what I would have bought if I was still working. I did purchase one piece of clothing for myself....drum roll.......Pajama bottoms, yes that's what I bought. "sigh!"
This week my sleep schedule has been rebounding badly. From no sleep to lots of sleep. For example, I went to bed at 8:00 pm Thursday night & woke up at 7:00 pm Friday night. I did that twice this week, then I can't seem to sleep for about 20 hours, then I sleep 20 to 24 hours. When I get up from sleeping the long hours I sometimes feel really good the first half that I am up then I get very sick & lay on the couch for the second half of the time I am up. I try to wake myself up with an alarm but that never works. I have always had this problem since I got CFS. I read somewhere that this is a CFS symptom but rare. Do any of you have this? Is it that rare or is it just the nature of the illness?
My family: We are not a well family by any means, we each have our issues & I think that helps us to really relate to each other. Misty, my daughter, has MCTD this is an illness that has a combination auto immune diseases including Lupus, Schleraderma, Dermatomyositis & Rhuematoid Arthritis. She also has Fibro & migraines. She is my hero, she may be in pain & sick but she takes good care of her two kids. I help when she is really bad but for the most part she does it all. Deylan, my 15 year old grandson, is a heart patient. He has had 6 surgeries on his heart, including 2 in New York City for a developing surgical technique, whien he was 2 1/2 yrs old & the youngest person to get this procedure. He has had a pacemaker since he was 6 months old. We homeschool him as best we can. He is a very good boy & seems happy with his life. Emily, 11 yrs old, has a seizure disorder. She had about 1000 seizures per day before she got on a medication, according to her neurologist. We thought she was our healthy one because the seizures were silent, we just noticed that she would stare alot or just seemed not to listen, concerned her Mom took her to a Neurologist & with testing discovered the seizures. She is doing much better since she is on the medication. About 6 months ago we found out through blood tests, that she is allergic to wheat, milk, pork & bananas. We now make her Almond milk. I actually really like it. Misty makes her bread & all of her goodies like cake & cookies, doughnuts & buns. She can't eat hot lunch anymore so we have to make her a lunch to take to school with her. I use as much of my energy as I can helping with my grandchildren & it gives me a feeling of accomplishment. I was never one who wanted to be an empty nester, it took time to get used to living with these three but I am happy I do.
Well, almost time for bed so I will quit here. Hope everyone is having a good day today. It is 8:00 am & I am going to try to sleep. We'll see I guess. Hugs, Denise
Replies
PAJAMA BOTTOMS! YOU WILD AND CRAZY WOMAN! lol.....! I think it\'s wonderful that you got out and went shopping with Misty. Whatever you see, that\'s to your liking....you should have! Thus sayeth I. Another CFIDS sufferer who finds pleasure in the smallest of things! Pajama bottoms sound good to me!!
I\'m so sorry to hear about the illnesses and suffering in your family. I would guess that Emily has petit mal seizures. They are so often very long in diagnosing. It may appear to the parents that the child just isn\'t listening or obeying, but actually, they are having periods of \"BLANK\" time, wher they are not seeing or hearing you. I\'m so glad she is on a good medication.
I\'m really happy that you journaled! Please do it often. It\'s cathartic and it helps your friends know how to support you.
God bless, Denise!! Night night.....(for however long you sleep)!! Sleep abnormalities affect most of us. Mine right now, is sleep five hours, awake for two, back to bed for four more. I haven\'t had a morning in a year. I hate this! Ugh....!! xo
Sounds like you had a great day out with your daughter. I\'m with ya in the pajama bottoms! It\'s all about comfort these days. I have a whole closet full ofcclothes I used to wear when I worked. Now I live in pajamas.
So sorry to hear your family has struggled so much with their health. That is a lot! Glad you all have each other to help you through.
Yes, I have had sleep abnormalities for years. Even before the official diagnoses of CFS and FMS. Unfortunately, I think a lot of us do. Sorry you are suffering with it too. Know how frustrating it can be! Being exhausted but not being able to sleep is what\'s hardest for me.
Hugs to you!!!
Wow, just catching up with some of my DS \'buds\' -- you and your family are challenged and then some. My heart goes out to you with lots of love and gentle ((hugs)) shared.