Sleeipng first thru the night only waking up every maybe every 2 1/2 to 3 hours instead of 1 and a 1/2. Then when awake - watch the news in bed and have a chance to relax before then nausea from the gastroparesis hits - and waiting to see just how bad that will be..... based on that - maybe broth but if a good day, ensure, again, on a good day, a couple ensures with the meds without too much nausea..... and on a great day - the ability to take the electric scooter around the corner to the store.... and be able to do something like concentrate on a movie, or a hobby, or get some wash done, or talk with friends..... then do it all again..... go to bed hoping the next day will be a good one.... and sometimes it is!

There is no way I'd complain about my bad days after reading the ones already posted.

Billye

Ok, time for another post. For me, a good day is waking up without a pounding headache. I have head nasty headaches for years, never going without a headache, day in and day out. I just determined it was from my family history. Some people actually have no idea what a headache feels like, others only have a headache on rare occasions...I have one every day, well, I have a continual headache, all the time. I was diagnosed with sleep apnea, and put on CPAP. I would wake without a headache, and that became my good minutes, the headache came back full force within the hour. I saw my sleep doctor after 2 months on CPAP, with little change, and he put me on Lunesta.

I know, to some, this may seem trivial. Everything is a huge undertaking for me because of my intolerance's. Like the Lunesta, the doctor wanted me on Ambien CR, but it contains gluten. The insurance company wanted me to take a generic Ambien (not CR), yet the drug company could not verify the product as gluten free, so Lunesta became my med. Every time I take a med, I am taking a chance on getting sick from something in the med.

So for me, a good day is one more without being glutened or effected by any of the other intolerance's. Finally, after one week on Lunesta, I am sleeping nearly 6 hours, and I can go 2-3 hours without a headache. Yet, now that I am spending more time in bed, my neuropathy is acting up. The cellphone is ringing in my foot again, and I have a cold spot on my right leg, just below the knee.

One day at a time, that's our best bet. Keep at it, never give up.
Deb

besides the fact that a cpap machine keeps your airway unobstructed and results in increased blood oxygen, could it be that the filter on the cpap is keeping you from breathing in irritants which result in your getting a headache and which may be why you get the headache a few hours after you get up still.

From reading the few posts here - I think the perception is that this is a comparision on whos the worst.... I dont think thats the point - for me the importance of knowing that each of us struggles and manages to get thru every day - in SPITE of what we are dealing with (which are obviously many different manisfestations of the same disease) can make us stronger by gaining a bit of strength from each other....... I find so many of you so strong and give me inspiration to continue when sometimes I dont know how I can - but I do - cause we all are .... and can lean on each other for suppport.....

Not according to the sleep doctor. I really am not sure of anything anymore. The doctor says if the headaches do not go away, we have to go down another path, with the shoulder pain and all, he is thinking fibromyalgia, which is something else I do not need to deal with. I think the headaches all stemmed from the malnutrion from my gluten eating years, which also can account for so many other problems of mine!

I agree totally!!!!

what I'd intended at all? It's more like, where we each are NOW and how we measure progress or lack thereof.

As long as I CAN get out of bed, tho not gracefully? I'm a happy camper! I can get up and try and DO a WHOLE DAY! When I'd first gotten PN, it'd take me about 15-20 minutes of contortions to GET OUT! So I'm happy with the flomps and flops! Just so's I don't fall out of bed?

Also, for others? The few who've responded show how differently this all effects/affects us. Each of us IS different! But to new folks you mite just see yourself in there somewhere!

Hugs and hope and good things! - j

After 16 years of "idiopathic" PN (now autonomic), every day is a bad day. I just grade them bad, very bad and plain b----y dreadful. My two main regrets regarding my PN generally are 1. Taking omeprazole (Losec originally) for a mechanical defect in my oesophagus which caused reflux of stomach acid. I did not know about B12 depletion and the "way out" levels until I joined Braintalk about 5 years ago. 2. Ever starting on gabapentin (Neurontin) about ten years ago. As I have stated in previous posts, I believe this drug to be one of the biggest disasters for neuropathy sufferers as it requires titrating eventually up to a very high dose (3600mg or even more) which at that point means one has to stay on that dosage for ever or else go through a period of horrendous withdrawal. One is then left with pain medicines only, which usually leads to some form of narcotic.

In the interests of decorum here I will not say what I would consider to be the requirement of a good day.

Tony

PS I would just like to add that I do not doubt for one minute that many members here suffer far more and worse symptoms than I. However we all have our limitations and react accordingly to our individual sufferings. I would just not want anyone to think I was making comparisons or courting sympathy.