So Ive slept 19 hrs a day for the last 3 days... it's becoming more often and is really affecting family as I can't take my boys out 😱. Tomorrow is a 7am start to get kids ready for school.... not sure I'm going to do this all.... our new house rent is 50% more expensive so I've had to drop my cleaner and reduce gardener to help out.... not sure how much longer I can keep up... been in hospital with breathing issues which then lead to an fnd attack where I lost use of my left leg... but got sent home as it wasn't a stroke so they had no idea what to do 🙈. I need to start to apply for pip but it's so complicated... and dla for my boys who need 24 hr care .... eugh. Just want to jump on a plane to now where and just stop.... sorry to moan ..... I know so many other in worse positions!!

8 Replies

  • Hi there ...wow you do have so much going on eh ! I'm Lucy from Brighton by the way....

    Just wondered if your still struggling with your left leg or if it's got any easier? Just I also loose control of my left leg and find ' pacing' helps though its tricky at times - you may be familiar with this already?

    Take care.

  • Hi Lucy!

    I'm in hertfordshire a few hrs from you ! I've tried pacing but I've got so much going on what do I choose?? Yes left leg keeps going , weakness and total loss of feeling...

    I'm dreading homework ... 😱. At least it seems youngest got into his new school today... would love to go to bed ... but house needs cleaning, and laundry, and dog needs feeding... hasn't been walked for 6weeks.... could be worse but I'm feeling sorry for my self! Need to see dr but I'm too exhausted to drive 🙈. Hugs hope you have good weather we've got sun x

  • Hi I feel for you as a mom of 2 school age kids I know what your going through , its tough but some how I find the strength to carry on x

  • Hi, I can understand and sympathize with what you are going through. I too have been diagnosed with FND after almost 2 years of tests (MRI's, CAT, EEG's etc). I share alot of your same symptoms and it does get frustrating however I am grateful to have found this site so that I may further educate myself while being able to blog with others who share with the same issues. Make sure to balance out your day and rest when needed. Take care and god bless!

  • Good Morning, I too am suffering with the chronic sleep issues. After almost 20 years with this thing, the chronic fatigue did not surface till two months ago. I have to date had 5 episodes sleeping and unable to stay awake for up to 30 hours on several occasions. I eat during this time and cannot remember most of it, oh and even how my husband takes me to the bathroom, I just lose time. They are saying its my nervous system from the Sjogrens disease. I am wondering why so many of us like you have the problems mostly with our left side primarily,, Wondering what the percentage is and why..

    I am remembering with your post how awful it was to have two small children and be homeschooling them with this thing, and could not even talk or move much of the time. It was a hard time, but somehow we are strong and we carry on and do what we need to do.

    Go ahead and vent, you have something to vent about and we need each other. We can all listen and share with each other, brings us peace and comfort knowing others care and we are here anytime to comfort. We are now raising out teenage grandson and for the first time in my life I am looking forward to a school year, been a rough summer, he's 15, and I am looking forward to the structure of a new school year. Sending up prayers to you and all, Cathy

  • Hey Cathy!!! Yes odd how many of us have left sided weakness but like a stroke!! I feel the teenage years... my eldest is 14 and I'm so glad school starts tomorrow!!! That way I can rest without feeling guilty 😱. Just had my 6th day I'll but made my self stay up most of the day and do some work...

    feel so sick though think I've caught a bug along with the fnd .... need to ask for help now as I can't do it all.... need help cleaning, cooking, shopping, watching kids. Started falling as left leg keeps going... not sure what to do next... don't want dr thinking I'm messing him around 🤣. Anyway need to get to sleep up at 7am to cook breakfast and get kids to school 🤗

  • You still cook breakfast?? WOW....My husband and grandson would love if I cooked them breakfast, lol...I dreamt I was hit in my left leg head on by a car, woke up crying in pain so bad in that left leg. There is no circulation left in that leg and all the nerves are shot they say, have to figure something out for the pain, I'll be contacting Dr. again on Tuesday. We had a barbecue today, wish I could have canceled it, but all the kids were coming with my grandbabies. Eyes burning, leg throbbing and ache everywhere else, just such a hard day. This auto-immune disease is beating me up more than the other right now. I was looking into this sleep disorder...It is pretty right now, CFS, if you overdue your body shuts down, the more you overdue, the more it shuts down....Ugh I'm an over doer, I guess I'll be sleeping all day tomorrow, if only i don't get hit by that car again..LOL, enjoy the first day of school, I still have a two days left :-)

  • Lol

    I'm an over doer too

    Xx. Often i have vivid dreams too...

You may also like...