Does anyone have good days ?

[cindybear]

I ask , because my pain Docter wanted to know how many days out of the week I had was that were "good days "" ..And I honestly , could not give him one day, that I could remember...It put tears in my eyes...I asked him what is a good day ? That I get through each day, just to get through another...Am I alone here...I'm on 2 long acting,,and topamax has been good for those stabbing , hammering railroad tie in my left eye pain...knock you down on your knees kind of pain...But the other stuff just helps a little with the pain, pressure-feels like my head will blow...But without it, I can honsetly say my pain is a 10, horrible, in fetal position, rocking back in forth in bed, wishing for death to come...So pain meds is a big releif, even though, I get a number 6 daily..that is my head pain..I also have, arthritis in all levels in my spine ( as per what my pain docter said as what my x-ray read ) and at times, when I do anything...pick up things ect...My back feels like it is broke in half..literally...And he said that what would help me most would be nsaids for that, but...with my inoperable aneurysm, it is not something I should take..Why I take morphine to help my back pain...So we increased my topamax to 300 mgs in hope that will help my head pain,,It does more for me than the narcotics , I feel...But I can not take topamax at night, it gives me horrid vivid night terrors..Just terrible dreams, that I remember for days and I can not sleep...etc...I just feel, when ask me, about good days...That I could have told him, yes, cause he has givin me back my life in so many ways. But the pain is there constantly allways..Am I alone, or Do you guys know how it is ? Hugs, Cindy Pain constantly for over 7 years

[Mark N]

Cindy, you are not alone. I have adjusted my idea of a good day because I never have a good day any more based on what I used to shoot for. I do have good days now but that is if I can ignore my pain for thirty minutes at a time to focus on a project or if I can be up and about for a couple of hours.

The days of limited pain have passed me by and constant pain is my companion. I have come to terms with my pain levels 3-4 increasing to 6-8 most days. When my pain levels are lower I do the things I need to get done and when it increases I work on reducing my pain. Adjusting to my pain levels makes my life better as I can feel as if I have good days from time to time.

I hope you can find some comfort in getting your life back, your life just includes pain that others don't have. A good day is whatever we decide is a good day. It is the way the day makes us feel not how much pain we have that determines if we have a good day or not. I truly understand not feeling like you have any good days. I hope you can have some good times each day.

[cindybear]

Don't get me wrong, I have good moments in my day,,with my family, pets, hubby. etc,,,My farm, My farm animals, I'm very lucky woman in many many ways,,,I have acceppted my fate,,,as it is...It's just , I could not honsestly say I have any 'good ' pain days...In the last 7 pluss years, I remember a 2 once when given a shot of 125 / 50 demerol and visterol I beleive..But lasted 4 hours, but it was a "good ' 4 hours..But I try to live every day as it could be my last, as it could, I grin and bear it,,As I think we all probably do,,WE put on that "face " for our family..We don't want them to worry, It is something I struggle with all the time. But no one seems to understand, unless you have been there yourself...Thanks for allways caring, Cindy

[Nana4&cntn]

Cindy,

I have pain from the time I get up until I go to bed. I have good and bad days depending on the level of pain. I honestly cannot remember a pain level below 5. I am with you on the 10 being in a fetal position, drooling and crying and wanting someone to give me an IV drip with something that will allow some relief. However, if I can keep my mind occupied and do things I enjoy, and put myself in Gods hand I know I will get thru the rest of the day.
I do enjoy talking with others in the same situation, I feel less alone. If that makes sense? I do have below 5 pain if I am floating in a warm pool, or treading water, great exercise for the legs. Now if I could find one close I would be there daily.
Cindy you are not alone, I wish there was more to be done for us, but for now this is all we get.
Take care,
Kathy

[Diandra]

Hi Cindy,
I think you doc was just trying to measure where you stand pain wise. Usually, if you say, Yes, I had a good day, the next question will be, what did you do that day that was different than other days.

I do have "better" days. There is never a day when the pain is completely gone but, I do find, as I try different things and meds, I do get respite periods. I do alot of alternative stuff and I will try just about anything to relieve the pain. I do cranial sacral therapy, I try every natural IV and treatment under the sun, I have done quite well on adding low dose Lyrica to my opiates and doing things to get my mind off the pain like Qi Gong and chanting and very deep yoga breathing. I only recently learned (via those great books and PBS specials with Dr. Oz and Dr. Roizen) that there is a nerve I believe called the vagus nerve that runs the length of your torso. I never knew why deep breathing helps so much to relieve stress and calm you. When you take a very deep breath, it expands the vagus nerve and causes relaxation. Now whenever the pain is very sharp, I stop what I am doing and take 5-6 very deep, down to the gut breaths and slowly exhale. It is very simple but, it works wonders.

Cindy, I think your case is perhaps not common and I honestly cannot begin to imagine how you tolerate that head pain every day. You have my complete and utter sympathy...and my prayers.

All my best,
Diandra

[Mark N]

Cindy, yes I know you have good moments but unless we change our perspective on what a 'good' day is we don't have any of those days any more.
I agree that your doctor was assessing what your pain was doing to you and the next question would be Diandra's question.

There is nothing wrong with saying you don't have any good days as some of us have pain that doesn't decline to give us good days. Your head pain isn't likely to give you a good day and it must be very hard to deal with it every day.

[ErinENj]

I definately think that the definition of a good day should be outlined by doctors - what are they thinking of as a good day? Is it a day where I didn't think about just taking a butcher knife and removing my spine all together because the pain is just too much to deal with? Is it a day where I spend less than 30 minutes crying at the end of it? Or is it a day when I just feel pure joy? 99.9% of the time, my answers to that would be 0.

I think it's another thing to be added to the list of things that are unique to each person. For me, I think a good day is one where my pain isn't on my mind every minute, where I come home and don't have to immediately collapse, where my pain hasn't stood in the way of me doing something I want to, and where I haven't wondered where my life is going to be in 10 years because I can't bear to imagine what my pain will be like by then. Those days are few and far between.

Thanks to my trip Saturday, my definition of a good day is somewhat different than normal. It's going to be a good moment when I get there in one piece, if I do, and then the worrying begins again for the ride home, especially after being active the two days in between, let alone sleeping in a bed that's not my own for three nights. So I think it's going to be a fantastic day when I get home, but I don't know. It could be a nightmare because of the pain I'm in, or because I can't walk, or even making it onto and off of the plane in one piece. (this may be completely irrelevant..sorry, it's weighing pretty heavily on my mind right now. lots to do, little time to do it in, and my boss is all over me to get things done before I leave, even though I told him I would. And of course, I have a meeting Thursday night that will undoubtedly last until 11 pm. So that takes away even more time. I have to run about 15 errands tomorrow, and do laundry, start packing, get all my medical stuff together, and write two stories for my boss Thursday. There's just a little stress being added to things by those 4 days. I just hope that it's worth it. I'm terrified that it won't be.)

I think the definition changes every day, at least for me. What is a good day today could be a completely crappy day next week. I think it's an okay day when I get through it to another one. Much beyond that, I try not to put it into those terms, simply because I'm afraid that by putting a name to it or by numbering how many I have, I'll see exactly how few there are, and that won't do much to help my mental state.

[cindybear]

thanks Guys,
You all have made me think on my 'good days ' But as I sit here and think on it..I would love to have a day...Where for once, I didn't for one day. have to think of the pain in this brain,,if for once it would allow me the comfort to enjoy a day with no mind blowing pressure that is constantly on the thoughts. It is so hard not to think of this dam aneurysm with this horrid pain..everyday,,But I know , I am lucky, I am still alive today to enjoy my grandchildren and all that is blessed in my life..And that is what gets me through every day..I come here most days,,And listen to everybody..I was here alot before the old system broke down, and do miss all my old friends..and feel scared to meet new ones because of what happened here before the system crash..I think it broke everybodies heart..I knew it did mine. But If there is something I feel I can help someone with, I will be there with my heart on my sleeve..I have been here since 2001/2002, and have felt this is my other family. My pain family, we that understand, my angels..And I thank you for all these years for the comfort and understanding you have gave me to get through another day/ year..Like I have allways said, you guys are my angels, thank you from my heart, Hugs, Cindy

[simby]

i don't necessarily get good days.
its more like good minutes and sometimes good hours.

sims

[Kathi49]

Cindy,

(((Hugs)))

I don't have an anuerisym but can relate to head and mind blowing pain. And back then when it all started; there was no relief. I know you are suffering and badly and I wish there was something I could say differently than the others have. I just know what it is like to have intense pain in your head 24/7. I asked my mom once since she used to get migraines all the time YET hers would pass in about 3 days. She told me if that had gone on every day for the rest of her life she would have just wished someone would take her head off. And that's kind of how I felt. But you are right...for me it was one day at a time and doing whatever I could to tone it down. And children? Yep, my own kept me going; my daughter and my job. You just know that you have to be there for them so that is what kept me going. Bless your heart...it has to be very, very rough. :( And keep in mind; there is no way I am comparing my condition to yours...I know yours is WAY worse. All I am really saying is HOW do you escape that pain every day...it is hard!!! And please don't think I am pouring salt into a wound...it is just that my heart goes out to you.

As for now, I have good and bad days. Lately, there have been more bad days. But I honestly believe a lot of it has to do with the ups and downs in the weather. And, well, other spinal problems seem to be heading south. But again, it is one day at a time and I liked Kathy's post. Water therapy in a hot pool is such a relief. At least I can move those stiff joints and take some pressure off...if just for awhile.

Feel free to vent anytime you want to and hugs once again.

[cindybear]

Sims, I completely understand..
Kathi49, thank you , for the hugs, I am very thankful for them and I think when the weather is bad, the pressure is way worse..I don't understand it, but it has been a bad winter and now spring is tough...But thanks again,
ErinENJ, I will be praying that things go smoothly for you in work and in your pain area. I didn't get my horrid pain until I was 38, I just could not imagine getting so young and trying to start a career and a family/ marriage and all young woman want..I will be praying that these things come easy for you..You are in my thoughts..
Everyone else, Thank you,,Cindy

[Peter B]

Everyone is pretty much on the same page here. Its all relative. If you compare how you feel now to how you felt before the monster came, NOBODY has ANY good days. Jump ahead now and I tell myself: "Based on how miserable I KNOW I'll feel, the days when the misery is at its lowest is a good day"

Pete