[Co...] Posted September 10, 2015 Share Posted September 10, 2015 Nova, .. .Glad to hear that you did not wake up in " the dreaded place"....I am right there with you with health fear, it's mostly mild and background music this morning. ......Seems like I am in a moderate wave after a nice string of some very good days. I know they will come back and I am grateful for for the improvements and 21 months done. .... ......I hope the day opens up some sunbreaks for both of us. I am just puttering around my house today as some chores are begging to get some attention . ....Probably time for a mellow easy going day with the dog. .......carry on Nova.. and thank you again for being here for and with us.. .you are such a support .....What's on your menu today.....mine is leftovers I think.......coop Link to comment Share on other sites More sharing options...
[ra...] Posted September 10, 2015 Share Posted September 10, 2015 Nova, that's definitely not bad! You have such a great attitude, I really admire that. Thank you so much for sharing your strength with us. I hope the day is going well for you. Coop, I hope you are relaxing with your dog! 21 months is an incredible achievement, that's really something to be grateful for and proud of. I hope you get some nice warm sun too. Link to comment Share on other sites More sharing options...
[Mi...] Posted September 10, 2015 Share Posted September 10, 2015 Hi girls and boys, 30 more days until 2 years for me. The theme is still lots of fatigue, vivid dreams, burning itchy skin, burning eyes, CNS/body tension. I sleep great but wake up feeling like I haven't slept at all. I think it's because of the constant vivid dreams. Like a lot of you, I'm too far into this journey to keep complaining about side effects. Honestly I can't listen to myself talk or think about how I feel anymore. I hate the sound of my own voice and thoughts. Hoping to make some big steps forward by this winter. Wish you all peace and healing. And by the way, things aren't as bad as I may have made them sound. I have had a handful of really fun days since last time I checked in. Lots of laughs, a few beers, nothing major, but I sure do value days like that! I want more! Link to comment Share on other sites More sharing options...
[Co...] Posted September 10, 2015 Share Posted September 10, 2015 Hi Beulah.....Happy to see you here this morning. ...Temper tantrums....you just go right ahead .....how can we not just hit a wall of coping burnout sometimes. ....Enough was enough months ago and yet here we are willing ourselves to call forth orchestrated combinations of coping strategies to have some normalcy in our lives. The extra effort it requires is an every day pull . I am back in a light weight wave, even though it is manageable it makes me want to scream and rant that that last long string of very goid days did not evolve into more permanent healing. Not done yet....working on acceptance acceptance acceptance... it seems like it is the only way to endure this and get through it, but I am tired of having to call in 'the troops' of coping strategies just to get out of bed in the morning.....here, let me have a temper tantrum with you. ....You sound like you are getting ready to greet the fall and winter with holiday projects....I love fall , but Christmas fills me with dread .....but this year I will be well enough to get a jump on it and enjoy it....I have been stashing gifts away all summer to stave off the overwhelming tsunami of preperation.... Your dinner sounds very good....Wishing you some sunbreaks in this day....coop Link to comment Share on other sites More sharing options...
[Co...] Posted September 10, 2015 Share Posted September 10, 2015 Mike. You sound very good in spite of lingering sx. Thank you for stopping by to share the positive improvements with us. I am right there with you on just being done with listening to the ongoing inner dialogue and scanning around sx and strategic mapping for getting through the day. We have been doing this long enough now to know that it just doesn't matter much what the sx are.....we get through them and gradually get to a place where some days return us to a place of laughing and enjoying a couple of beers with friends....looking forward to holidays, getting outside in the beautiful fall weather, going to the market , going on a day trip, going into the city to see a show. We are all getting closer to having our lives back. So glad to hear that you are so much better...coop Link to comment Share on other sites More sharing options...
[dr...] Posted September 10, 2015 Share Posted September 10, 2015 Hi all...I didn't read back yet. After a passable day yesterday I woke at midnight with a terrible headache pain radiating out form my jaw and on my whole right side of head. I was up most of the night and my mind started running that this isn't part of withdrawal. I had headaches before but nothing like this several times a week. I just feel since many others don't get this it must not be withdrawal related. I am still trying to get in the UCSF headache center but I really don't want to take any drugs as I would like to see where I am at at 2 years. oh...i am also weaning off my caffeine from 1.5 cups per day. I am down to .2-.5 cup of regular coffee. I know this can be adding but it is frightnening to wake up mid sleep with a crushing headache. Link to comment Share on other sites More sharing options...
[...] Posted September 10, 2015 Share Posted September 10, 2015 Hi Everyone, Hope everyone is doing Ok and the suffering has not been as bad and some relief is had. There appears to be lots of healing which is encouraging with bits and pieces of rubbish thrown in for good measure. My wave gave me a little reprieve the last couple of days, not totally by any means but definitely had things a little easier especially evening (mornings are always blah). I have been busy at work too and been able to manage. Today, not so good ugh!! I’ve been trying to distract and last night I made some ‘Rocky Road’ to bring to work as I had the energy to do so. I decided to have a little nibble (sugar for me is a no no), anyway my nibble turned into full piece and I’ve been toxic all day (not sure if this is the reason). Body tension, head pressure, fatigue and I also felt really dizzy and faint earlier. Concentrating has been really difficult and I’ve felt brain dead at work. All this is nothing new and I’ve coped many times with these symptoms. One thing that really incapacitates is fear. I just feel scared, especially about being in the house on my own and just have the need to get out of the door. I’m usually fine on an evening and in ‘normal life’ I have always been content in my own company. I don’t know what this is about…………. Coop, I have eye floaters too and sometimes my vision is off. Temper tantrums!!!! Mine are appalling sometimes but not had one this week so far. Who wouldn’t have them though, putting up with this. Sometimes I really want to band my head on the wall……. Literally. Is that weird? 17 months tomorrow. Good grief, thought I would be me by now. Seems not!! Link to comment Share on other sites More sharing options...
[Si...] Posted September 10, 2015 Share Posted September 10, 2015 Thanks for the responses drew and nova. It's always appreciated. Coop I'd say you probably shouldn't worry about the floaters much really. Everyone has them. Just some people have more than others. They are especially noticeable for people with bad nearsightedness. I have extremely poor vision (-7 in each eye) and have seen floaters since I was about 11 years old. I barely ever notice them anymore. Yeah they aren't any fun, but that won't hurt you. Just bits of protein floating around. You just had your eyes checked not too long ago. hope you feel better. Try not to get ramped up about it. I actually play games moving my eyes fast and watching floaters like a snow globe. I'm worn out, but what's new. My friend is nearly here. Which is cool. Haven't seen him in about 6 years. He lived in Seattle for about 8 years. Kind of your neck of the woods coop. ....Sig.. You will have a great visit with your friend...yep, I am right over the mountains from Seattle. Spokane is the plain Jane sister of Seattle. Seattle is so much more progressive ....some of that dribbles over to us ( thank goodness). I love love love Seattle, but it is very expensive to live there. Some people commute into Seattle as much as 100 miles each way to thier jobs in Seattle and live in the outlying areas.. ..Wishing you SLEEP.....coop Thanks Coop. I got a little sleep last night since I didn't hardly the night before. Went to bed at 12:30 and was woken up at 5:30 by my wife constantly hitting her snooze button. I did manage to fall asleep maybe for 30 minutes after that. So probably about 4 - 5 hours. Still not feeling great, but better than yesterday with no sleep. Glad your health fears calmed some. My friend got in last night, and then we went eat some Tex-Mex. The cost of living in Seattle was one of the reasons he moved backed to Huntsville, AL where he's originally from. He said some of the areas he was living in gentrified over the years. Driving his $800 rent up to $2000. So now he's moving back to Atlanta after not living here for almost 15 years. I agree about the commute too. Atlanta's traffic is crazy. Some people drive nearly 2 hours each way. There's no way I could do that. I just can't justify sitting in a car for that long every day. Of course farther out of the city the nicer the house you can get for less money. Link to comment Share on other sites More sharing options...
[No...] Posted September 10, 2015 Share Posted September 10, 2015 Hi ... went for a nap ... slept for five hours ... now I feel like I am swimming in cotton wool ... I guess crime doesn't pay ... Oh well ... Hang on folks ... we are getting there ... Link to comment Share on other sites More sharing options...
[...] Posted September 10, 2015 Share Posted September 10, 2015 Hi ... went for a nap ... slept for five hours ... now I feel like I am swimming in cotton wool ... I guess crime doesn't pay ... Oh well ... Hang on folks ... we are getting there ... So frustrating hey? Something so normal as a nap. This is so exhausting and can't even take a bloody nap!!!! Yes hang on. I've had cotton wool in the head and concrete in the body today too. Rubbish Take care Nova Link to comment Share on other sites More sharing options...
[No...] Posted September 10, 2015 Share Posted September 10, 2015 Hi Marj ... I only have the cotton wool ... forgot to stop at the store for the concrete ... Hope you have a quiet night ... Link to comment Share on other sites More sharing options...
[...] Posted September 10, 2015 Share Posted September 10, 2015 Never mind, I have plenty to go round. I may start selling my own and make some money to travel the world when this WD looses it's fight Link to comment Share on other sites More sharing options...
[No...] Posted September 10, 2015 Share Posted September 10, 2015 Marj ... a very "concrete" goal ... hope you make a bundle ... Link to comment Share on other sites More sharing options...
[Gr...] Posted September 10, 2015 Author Share Posted September 10, 2015 Hi. Mental, still 90%. physical is like trying to wade through thick mud. I've got one foot in healing, and the other stuck in a bucket of concrete. I'm not posting much, I'm trying to use the energy I have to do things around the house, and I'm trying as hard as hell not to think about how I feel, or withdrawal at all. I had a half hour or so last night where this heavy feeling lifted and I felt almost lighthearted. Feels like gravity is trying to suck me into the ground, or the couch, lol. still believing in healing. the mental recovery is proof positive. I can't ignore that. And I asked my therapist, how bad was I when I came to you last Feb. She said so bad cognitively she didn't think the therapy was going to work out. I felt validated, and I also felt so, so sad. That was at 15 months I went to her. and my poor mind was still missing in action. I cried, I guess I was grieving this experience, what my poor self had been through. Mostly I've been so busy trying to survive this ordeal, I just couldn't let myself think about how bad it was, about how scary it is to be so damned sick, to be so close to losing your damned mind. I mean to be positive. I was so, so bad, and my mental, cognitive, is back 90%. And what success stories say is true, the healing is happening and you never feel it, but it's def happening. And I know the rest of me will heal in time. Patience and acceptance and one foot in front of the other and gently push. We will all get there. Link to comment Share on other sites More sharing options...
[dr...] Posted September 10, 2015 Share Posted September 10, 2015 Nice post Greene. Hi everyone else. Well...I meditated for an hour and had a cranial massage. The headache broke after about twelve hours. Rather intense. My bottom of skull/top of neck was like a vice. Massage girl loosened everything up. Feel wonky but no pain. I'm convinced these headaches are due to my limited ability to handle stress. I've been clicking my jaw more than ever now (this tick replace panic attacks so I guess it's progress) and the pain started there last night. I'm a hot mess with this crap but trying to keep my head above water. It's my first performance tonight I'm going to miss in a long time. Bummed but after today it tells me it was the right decision. Onward my friends Link to comment Share on other sites More sharing options...
[Si...] Posted September 10, 2015 Share Posted September 10, 2015 Sorry you had a tough night last night. I do have terrible head pressure constantly, but I'm sure it's no where as bad as what you get. Sorry you'll miss a performance tonight. I hate how this crap makes you have to modify your plans. Glad the massage helped some. My wife sometimes gets the aromatherapy massage oil out and rubs my temples / forehead. I'm not feeling great today either. I'm always afraid of not sleeping. It drives me crazy worrying about it all the time. Maybe the tide will go out soon and we'll have an easier time keeping our head above water. Link to comment Share on other sites More sharing options...
[be...] Posted September 10, 2015 Share Posted September 10, 2015 Beulah ... I am getting the broomstick out of the closet ... should be there for dinner time ... Tantrums ... haven't got a clue where they come from, but they sure do have some energy ... it is curious how they can just show up out of the blue ... oh well ... it is what it is until it isn't ... Have a good day ... Ok Nova, don't forget to feed the broom meter..don't want it towed away..New brooms are expensive. Link to comment Share on other sites More sharing options...
[be...] Posted September 10, 2015 Share Posted September 10, 2015 Hi Beulah.....Happy to see you here this morning. ...Temper tantrums....you just go right ahead .....how can we not just hit a wall of coping burnout sometimes. ....Enough was enough months ago and yet here we are willing ourselves to call forth orchestrated combinations of coping strategies to have some normalcy in our lives. The extra effort it requires is an every day pull . I am back in a light weight wave, even though it is manageable it makes me want to scream and rant that that last long string of very goid days did not evolve into more permanent healing. Not done yet....working on acceptance acceptance acceptance... it seems like it is the only way to endure this and get through it, but I am tired of having to call in 'the troops' of coping strategies just to get out of bed in the morning.....here, let me have a temper tantrum with you. ....You sound like you are getting ready to greet the fall and winter with holiday projects....I love fall , but Christmas fills me with dread .....but this year I will be well enough to get a jump on it and enjoy it....I have been stashing gifts away all summer to stave off the overwhelming tsunami of preperation.... Your dinner sounds very good....Wishing you some sunbreaks in this day....coop I hear you coop, acceptance is huge! I love the feeling forgetting I'm in withdrawal.. I did that this afternoon. I was going about my business and my right leg started hurting and I thought what in the world is going on with my leg...oh yeah. It's rare that this happens but I love when it does. Sorry to hear your waving is back..I go back and fourth with the waves...here today gone tomorrow. Yes, I am greeting fall, not so much Christmas though.I just need enough projects to get me through the holidays, if I could I would cancel them...just not ready for them mentally, I just don't like having to fake the Christmas spirit..one day I will have it back...just not now. I love that we have each other here during the holidays...it gets us through. I am so appreciative of all of you!! Good for you getting a jump on holiday shopping. I have ordered a couple of things for my granddaughter. I bought her some pumpkin earrings the other day and you would have thought I gave her a lot of gold. Her ears have only been pierced a couple of months and this is her first real pair. We will get through this my sweet lady. One day at a time!! Link to comment Share on other sites More sharing options...
[Co...] Posted September 11, 2015 Share Posted September 11, 2015 Beulah....I love your story about buying pumpkin earrings for your little granddaughter. ..I remember when my daughter was little and first had pierced ears....they are so thrilled . Yes, the wavy days....they come and go , as you say, but the wavy ones still slow me down to a crawl. This wave has brought total body pain. It makes me want to just lay on the couch and not move anything. ...It will pass and it's still so much better than it was just 2/3 months ago. Wishing you a very good day tomorrow.....coop Link to comment Share on other sites More sharing options...
[Co...] Posted September 11, 2015 Share Posted September 11, 2015 Hi. Mental, still 90%. physical is like trying to wade through thick mud. I've got one foot in healing, and the other stuck in a bucket of concrete. I'm not posting much, I'm trying to use the energy I have to do things around the house, and I'm trying as hard as hell not to think about how I feel, or withdrawal at all. I had a half hour or so last night where this heavy feeling lifted and I felt almost lighthearted. Feels like gravity is trying to suck me into the ground, or the couch, lol. still believing in healing. the mental recovery is proof positive. I can't ignore that. And I asked my therapist, how bad was I when I came to you last Feb. She said so bad cognitively she didn't think the therapy was going to work out. I felt validated, and I also felt so, so sad. That was at 15 months I went to her. and my poor mind was still missing in action. I cried, I guess I was grieving this experience, what my poor self had been through. Mostly I've been so busy trying to survive this ordeal, I just couldn't let myself think about how bad it was, about how scary it is to be so damned sick, to be so close to losing your damned mind. I mean to be positive. I was so, so bad, and my mental, cognitive, is back 90%. And what success stories say is true, the healing is happening and you never feel it, but it's def happening. And I know the rest of me will heal in time. Patience and acceptance and one foot in front of the other and gently push. We will all get there. ......Green, if it's any consolation , today was the first day in 2 years that I have been up .....straight through from 7am to 7pm...I only did every day things, cleaned up my house, did some errands with my daughter, cooked a very easy pasta dinner....folded some laundry....I am so tired and in so much total body pain I could cry. ....Like you, I usually have to pick and choose one thing to do other than the little household tasks I distract myself with. Up until June I was back on the couch by 1 or 2 ....slowly over the summer I worked it up until 4pm.....I haven't moved past 4pm until today. I actually get depressed looking at my bed. ....But think about it, we have been depleted and in bed or on the couch for 2 years. that takes awhile to come back from. ...When my clarity came back on board I just assumed my body would come back with it at the same pace....like you, I am mostly dragging it along the best I can. Maybe year 3 for me is going to be about building my body back and being able to stop hobbling and crawling along like a 100 year old woman....If my body could follow my mind at the same pace I would be 95%....but I think it's going to be awhile....and take some commitment to work on getting some fitness back.... It's all going to come back Green....just not fast enough ...I am really tired of waiting ....Hope you gor a bike role in....Here's to new couches without butt impressions.....coop Link to comment Share on other sites More sharing options...
[Ko...] Posted September 11, 2015 Share Posted September 11, 2015 Hi Buddies, I haven't posted for awhile, just not feeling well enough to do so. I like to check in to let you know I'm still here and suffering right along with you. I'm still having sleep issues. Falling asleep at 4am and sleeping off an on until noon. Sometimes I don't sleep at all. It seems all of us are suffering from sleep issues. The burning and pain in my lower legs and feet is still with me. It lets up sometimes but never goes completely away. I found these ice pack socks on line and they really help my feet. I think I got them at FootSmart. Still having terrible body pains around my ribs. Feels like a someone has me in a bear hug and won't let go. One rib on the left side feels like it's broken, so I put ice on that. Last week it was a rib on the right side. I also have the muscle cramps. I use a very low dose muscle relaxer when I'm so cramped I can't walk. Like Green my brain is 90% back, but my body is killing me. I tried some edible MJ to see is it would help with pain or sleep. Drew was right it's very difficult to control the dosage. I've never used much MJ before so I wanted to be careful. I tried some cookie. I took half of the recommended dose. OMG it knocked me out for 8 hrs. I could barely walk and I was slurring my words. It was really scary. The next day I tried 1/8 of the dose and it made my walking really more unstable and put me in a cog fog. It did stop my legs from stinging. I decided that MJ is not such a good idea. It's helped the pain, but I completely stoned mentally. I'm like all of you just trying to take it one day at a time. It's really hard sometimes. Especially when friends start to question you. Why don't you find a doctor who can help you? There's got to be something you can do. They just don't get it. Thank god I found all of you. Link to comment Share on other sites More sharing options...
[No...] Posted September 11, 2015 Share Posted September 11, 2015 Well ... it pays to be up at 2 AM ... 3 batches of cookie dough, prepped a meat loaf, and been to the grub store and back ... and watched the Patriots football game ... Time to have breakfast and then collapse ... Going down to the farmer's market and the library in a while ... Gotta make hay while the wave is at bay ... hey, that rhymes internally ... didn't know I was a poet, but I guess I am, my toes sure do show it because they are long fellows ... Have a good day folks ... I may be in the geriatric ward by noon ... Link to comment Share on other sites More sharing options...
[No...] Posted September 11, 2015 Share Posted September 11, 2015 Green ... you are positive ... you show up and tell your truth ... what else is there some days? ... Good to hear from you ... Link to comment Share on other sites More sharing options...
[No...] Posted September 11, 2015 Share Posted September 11, 2015 Korbe ... we are doing precisely what we need to do ... we got of the drug, we stayed off the drug, and we are getting better ... I don't think we can ask anymore of ourselves ... We have the best doctor in town ... our bodies ... they know what needs to be done and are doing it for each of us ... and we have the best nurse in town ... Time ... Sorry you are still in the soup ... one day all will be well for you ... Be Well ... Link to comment Share on other sites More sharing options...
[No...] Posted September 11, 2015 Share Posted September 11, 2015 Coop ... yes ... depleted ... it needs to be recognized for some of us ... and like all the rest of this stuff, this too shall pass ... Hope you are getting a good rest ... Link to comment Share on other sites More sharing options...
![[Gr...]](data:image/svg+xml,%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20viewBox%3D%220%200%201024%201024%22%20style%3D%22background%3A%239ac462%22%3E%3Cg%3E%3Ctext%20text-anchor%3D%22middle%22%20dy%3D%22.35em%22%20x%3D%22512%22%20y%3D%22512%22%20fill%3D%22%23ffffff%22%20font-size%3D%22700%22%20font-family%3D%22-apple-system%2C%20BlinkMacSystemFont%2C%20Roboto%2C%20Helvetica%2C%20Arial%2C%20sans-serif%22%3EG%3C%2Ftext%3E%3C%2Fg%3E%3C%2Fsvg%3E)
![[bi...]](data:image/svg+xml,%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20viewBox%3D%220%200%201024%201024%22%20style%3D%22background%3A%23c462bc%22%3E%3Cg%3E%3Ctext%20text-anchor%3D%22middle%22%20dy%3D%22.35em%22%20x%3D%22512%22%20y%3D%22512%22%20fill%3D%22%23ffffff%22%20font-size%3D%22700%22%20font-family%3D%22-apple-system%2C%20BlinkMacSystemFont%2C%20Roboto%2C%20Helvetica%2C%20Arial%2C%20sans-serif%22%3EB%3C%2Ftext%3E%3C%2Fg%3E%3C%2Fsvg%3E)
![[Fa...]](data:image/svg+xml,%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20viewBox%3D%220%200%201024%201024%22%20style%3D%22background%3A%2362c4af%22%3E%3Cg%3E%3Ctext%20text-anchor%3D%22middle%22%20dy%3D%22.35em%22%20x%3D%22512%22%20y%3D%22512%22%20fill%3D%22%23ffffff%22%20font-size%3D%22700%22%20font-family%3D%22-apple-system%2C%20BlinkMacSystemFont%2C%20Roboto%2C%20Helvetica%2C%20Arial%2C%20sans-serif%22%3EF%3C%2Ftext%3E%3C%2Fg%3E%3C%2Fsvg%3E)
![[Md...]](data:image/svg+xml,%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20viewBox%3D%220%200%201024%201024%22%20style%3D%22background%3A%2362c4b1%22%3E%3Cg%3E%3Ctext%20text-anchor%3D%22middle%22%20dy%3D%22.35em%22%20x%3D%22512%22%20y%3D%22512%22%20fill%3D%22%23ffffff%22%20font-size%3D%22700%22%20font-family%3D%22-apple-system%2C%20BlinkMacSystemFont%2C%20Roboto%2C%20Helvetica%2C%20Arial%2C%20sans-serif%22%3EM%3C%2Ftext%3E%3C%2Fg%3E%3C%2Fsvg%3E)
![[He...]](data:image/svg+xml,%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20viewBox%3D%220%200%201024%201024%22%20style%3D%22background%3A%23c46762%22%3E%3Cg%3E%3Ctext%20text-anchor%3D%22middle%22%20dy%3D%22.35em%22%20x%3D%22512%22%20y%3D%22512%22%20fill%3D%22%23ffffff%22%20font-size%3D%22700%22%20font-family%3D%22-apple-system%2C%20BlinkMacSystemFont%2C%20Roboto%2C%20Helvetica%2C%20Arial%2C%20sans-serif%22%3EH%3C%2Ftext%3E%3C%2Fg%3E%3C%2Fsvg%3E)
![[Dr...]](data:image/svg+xml,%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20viewBox%3D%220%200%201024%201024%22%20style%3D%22background%3A%237d62c4%22%3E%3Cg%3E%3Ctext%20text-anchor%3D%22middle%22%20dy%3D%22.35em%22%20x%3D%22512%22%20y%3D%22512%22%20fill%3D%22%23ffffff%22%20font-size%3D%22700%22%20font-family%3D%22-apple-system%2C%20BlinkMacSystemFont%2C%20Roboto%2C%20Helvetica%2C%20Arial%2C%20sans-serif%22%3ED%3C%2Ftext%3E%3C%2Fg%3E%3C%2Fsvg%3E)
Recommended Posts