Please allow me to vent for a page or 2. It's past 3 am and I've been
wide awake ALL night. I'm in SO much pain, and I can't seem to keep it
under control.
Pain meds seem to only knock me out (or make me extremely drowsy) during the DAY but at night, I'm not tired at ALL.
I wish my body would just work! I can't believe I'm so wired now when I was dozing off at dinner. It was an important dinner too...John surprised me with reservations at a nice restaurant since it was our 11 year anniversary of our first date! I didn't want to be sleepy then. I wanted to be sleepy FIVE HOURS AGO.
When going to bed, despite taking a pain med, and despite being tired, as soon as I put my head on the pillow, my exhaustion disappeared!!!!! The pain just keeps me up and even though the medication helps for a short period of time, I'll either itch, or I'll start thinking about work. I try to do relaxation exercises but they keep me awake!
Becasue it's a pretty bad spell this time around, though I continue to hurt within 2 or less hours after taking a pill, I can't take but SO much pain medicine, so I pretty much just have to deal with the #10 pain that still lingers. It may be time to try a new pain medication. I see my pain doctor on Tuesday.
My belly has bloated and I've put on about 7 pounds again in just a week- second month in a row this has happened, and I've been deliberately taking less pain medicine because of its constipation effects yet my belly is still stopped up big time!!! My GI doctor had some good suggestions from last time, and I'm taking the advice, so I just have to wait and see if it works.
I dont' know what to do about work tomorrow. I know for a fact I will not be able to function. Hoping to come in in the afternoon for a bit? Pain is just getting worse and worse for me, and it's even effecting me more cognitively than it has before. I just can't seem to understand simple things when I'm trying to deal with the pain not going away.
I hate the idea of missing work, so I may just see how things are in 3 hours when I'm supposed to get up anyway...maybe I'll still be 'wired'. I have a few sleeping pills left but I'm afraid if I take one, I really won't be able to get out of bed at a decent hour even if I go in the afternoon. I'm stressed because my boss is leaving the country on Tuesday for the REST of the month, I'm out on Monday for John's graduation, my other boss is out until Monday and we have 100 million urgent things to discuss/do before he leaves, so I can't really afford not going in. I WOULD go in on Monday in the mid afternoon BUT my boss precepts from 1-5 so it's not like he can meet then. He hasn't been clear as to what time he is leaving the office on Tuesday before he heads to the airport, so I'm left worrying and worrying and feeling like I'm dropping the ball for no tbeing able to come in Monday morning when my boss would prefer to have our meeting (we usually meet late Tues afternoon but obviously can't do that this week)... I know it's not my fault it's just a bad time for my boss to leave the country but what can one do???
I'm also covering for the division chief's assistant, so I really NEED to be there to take calls and so on. I may just have to be a zombie. I also MAY be able to frantically put coverage for ME together but aaaaa I'm just so upset right now. And I hope I'm not like this on Monday. And now that I've fiished writing this, I'm not in pain anymore, but I'm sure not sleepy! :( and I'm pretty sure that this 'no pain' feeling will NOT last long. Maybe I will be lucky. Maybe.
May is also NF awareness month. I have been trying to post a fact a day. I really hope more awareness can be made for this disorder. People like me suffer SO SO SO much, yet few doctors understand it. It's so frustrating that this is the most common neurological (or neurogenetic- that's the more proper term) disorder but the LEAST understood.
BLAH. I guess I'll see how the day goes... I'll try to write apost later today to update you.
Whining over- if you even read this, sorry for wasting your time.
Pain meds seem to only knock me out (or make me extremely drowsy) during the DAY but at night, I'm not tired at ALL.
I wish my body would just work! I can't believe I'm so wired now when I was dozing off at dinner. It was an important dinner too...John surprised me with reservations at a nice restaurant since it was our 11 year anniversary of our first date! I didn't want to be sleepy then. I wanted to be sleepy FIVE HOURS AGO.
When going to bed, despite taking a pain med, and despite being tired, as soon as I put my head on the pillow, my exhaustion disappeared!!!!! The pain just keeps me up and even though the medication helps for a short period of time, I'll either itch, or I'll start thinking about work. I try to do relaxation exercises but they keep me awake!
Becasue it's a pretty bad spell this time around, though I continue to hurt within 2 or less hours after taking a pill, I can't take but SO much pain medicine, so I pretty much just have to deal with the #10 pain that still lingers. It may be time to try a new pain medication. I see my pain doctor on Tuesday.
My belly has bloated and I've put on about 7 pounds again in just a week- second month in a row this has happened, and I've been deliberately taking less pain medicine because of its constipation effects yet my belly is still stopped up big time!!! My GI doctor had some good suggestions from last time, and I'm taking the advice, so I just have to wait and see if it works.
I dont' know what to do about work tomorrow. I know for a fact I will not be able to function. Hoping to come in in the afternoon for a bit? Pain is just getting worse and worse for me, and it's even effecting me more cognitively than it has before. I just can't seem to understand simple things when I'm trying to deal with the pain not going away.
I hate the idea of missing work, so I may just see how things are in 3 hours when I'm supposed to get up anyway...maybe I'll still be 'wired'. I have a few sleeping pills left but I'm afraid if I take one, I really won't be able to get out of bed at a decent hour even if I go in the afternoon. I'm stressed because my boss is leaving the country on Tuesday for the REST of the month, I'm out on Monday for John's graduation, my other boss is out until Monday and we have 100 million urgent things to discuss/do before he leaves, so I can't really afford not going in. I WOULD go in on Monday in the mid afternoon BUT my boss precepts from 1-5 so it's not like he can meet then. He hasn't been clear as to what time he is leaving the office on Tuesday before he heads to the airport, so I'm left worrying and worrying and feeling like I'm dropping the ball for no tbeing able to come in Monday morning when my boss would prefer to have our meeting (we usually meet late Tues afternoon but obviously can't do that this week)... I know it's not my fault it's just a bad time for my boss to leave the country but what can one do???
I'm also covering for the division chief's assistant, so I really NEED to be there to take calls and so on. I may just have to be a zombie. I also MAY be able to frantically put coverage for ME together but aaaaa I'm just so upset right now. And I hope I'm not like this on Monday. And now that I've fiished writing this, I'm not in pain anymore, but I'm sure not sleepy! :( and I'm pretty sure that this 'no pain' feeling will NOT last long. Maybe I will be lucky. Maybe.
May is also NF awareness month. I have been trying to post a fact a day. I really hope more awareness can be made for this disorder. People like me suffer SO SO SO much, yet few doctors understand it. It's so frustrating that this is the most common neurological (or neurogenetic- that's the more proper term) disorder but the LEAST understood.
BLAH. I guess I'll see how the day goes... I'll try to write apost later today to update you.
Whining over- if you even read this, sorry for wasting your time.
I'm really sorry to hear about what you are going through. You'll always be in my prayers! May god provide you the strength and help you recover.
ReplyDeleteHi! My name is Abby and NF1 too. i can relate to you so much, i found you by gooogling "lyrica NF1 pain worse" yay so glad I found you, I mostly stay away from NF communities because I have strong opinions that piss people off...anyways I hate this disease and I hate how some doctors see me as a crazy hypocondriac who can't deal with pain. I've tried like 15 things and. no help. Just dialudid and Percs give me relief. I too had cancer from NF1, (mpnst) and was ignored by a doctor. I feel so alone with NF, completely alone. I feel bad for my fiance who I always wake up when I can't sleep due to pain. NF is a nightmare, a hopeless nightmare..anyways I find it comforting that someone with NF is so much like me. -Abbyq
ReplyDeleteOh and stupid me, I used my silly expired domain! I'd love to talk to you! (this is my real email)
ReplyDeleteAbby! Please forgive me. When you first wrote, I was traveling. Then life got CRAZY busy. I'd LOVE To connect with you! Ask me anything. how are you feeling today??? I'm so glad you found me!!
Delete