life in the sick lane.
Hey,
Back on sleep track no 7..........meaning once I "went to sleep I stayed asleep til morning"........sounds like an advertisement for special sleep beyond the city limits of Las Vegas.
I take 6 mg of Melatonin. Years ago I took prescription sleep medications, but no longer. Melatonin helps me relax and off I drift. It may not be the right answer for others, but it is a good fit for me. Ambien gave me nightmares, Lunesta gave me limited sleep and a horrible tin can aftertaste that lasted me HOURS the next day. Ya can't brush it out or take anything to stop it.......it is time activated somehow.
Like any CFS/Fibro baby I struggle with Insomnia sometimes and have to ride it out until there is peace in the valley again...........compared to the way it was in 2010 and 2011 I am doing much much better. I am also on less prescription medication........also not working, not being as stressed, not having the outside pressures and stimuli as before helped. Plus changing my life priorities .......it all made a huge impact.
Am I still ill? Uh huh.........Will I probably always be ill? Uh huh. I don't live each day frantically hoping for the cure......I try to live the best way I can. My spirit is better able to handle things most of the time. A calmer spirit has really helped me. I used to live in such a frantic place mentally and it threw my emotions in to a constant tizzy. It was hard to call this mental mess I was in HOME. Home isn't just a physical place you live, for me it is also about perspective, thoughts, emotions........spirit..........I have to have a place of Sanctuary from the inside out.
Before I lived in such chaos...........the physical pain was so high, the level of fatigue was so intense. I fell a lot before.......a lot a lot. It was scary. Upright one minute and on the floor the next........or playing out a huge battle to try not to fall and getting hurt in the process. I also expected the worst..........I expected it. I had so many medical problems - medical emergencies and traumas.........so many losses and shocks to my system that the worst to me was normal, it all made sense.
I tried to cover up my conditions with a lot of people........that only works for about a New York Minute. People know something is wrong, but people who will stand by you.........are a rarity. At least sadly that was my experience. I was accused of all kinds of things.........not the least of them lying....it hurts and chips away at your integrity, your character........when you are so ill and it is so hard to understand not only what is happening to you, but you also deal with another big why. Why most people doubt and question and attack and belittle and roll their eyes..........it chips away at the even the strongest oak tree in the forest and it is so hard when that mighty solid oak tree cracks, shudders, topples and falls. Once the mighty oak within a sick person falls, it is very hard to get back up and stand tall again. But we try.........we are tryers.........we want to get up as often as we can. We want to LIVE.
People have a lot to learn about illness and compassion. I know I did.....when I was healthy I didn't know much of anything about the conditions that impact me now. They were just words, not realities........I don't expect the whole world to stop, drop and roll for me.......because I got sick. I just don't really understand the way people who knew me and know me ARE. This wall of quiet distant coldness.........it is a cold war in and of itself. It is painful, isolating and hurtful. It gives me great insight into what the elderly, for example, go through.........because the body is having a lot of problems.
The body becomes like a car and it has problems now with the driver as well as constant problems with the engine, tires, windshield, the doors fall off, the trunk pops open for no reason.....stuff flies out of the trunk..........,parts of the engine are missing or blow up, the hubcabs FLY.........the battery won't hold a charge, the oil has magically disappeared......the brake lights work/don't work........work/don't work. The upholstery is fraying and the stuffing is defective..........the shocks are shot......and then the next day they seem to be just fine..................the paint is coming off.........one headlight works on Tuesday and then on Thursday it's the other one.
It is hard being this car..............damn hard and having everyone keep their distance, cause you don't know what to do.......and they figure NOBODY can have this big of a lemon, ya must be making it up, it can't be real...........where are the candid cameras?????? Are we being pranked? But no......our new car body is odd, quirky, on fire.....out of sorts.......sometimes our engines run too fast and other times we simply don't start. A lot of times we try to mash on the gas and we just peter out. (mash on the gas is a southern thing.....) We have become a hypersensitive super fine tuned exotic and very expensive vehicle.
This car of ours feels PAIN.......physically - mentally - emotionally. This car is a real live person with an engine run by vital organs.......a beautiful beating heart and a pain impacted confused brain and needs help. Seeks courage and hope and direction .........please lead us to Help in Hopeville. We need to, we have to believe, we have to have HIGH HOPES.
We find that we can't run on the usual gas and we have to have optimal weather, road conditions and other mysterious factors that we are currently to foggy about to fathom into this equation. Now we try various fuels and test various factors to try and create the best conditions possible for the race we try to run each and every day.
It's not that we are so keen on being the fastest...........we are simply trying to stay on an even keel. No surprises.......no black ice, no high winds, no natural disasters, no unexpected turns or sudden need to hit the brakes. In our world this can mean anything from reactions to meds, food, the environment.....a new treatment, getting dressed........sigh..... breathing........being alive. The Bonneville Salt Flats are too hot........the North Pole is too cold, where do we belong?
The thing is that we can't just up and go anywhere, we need to bloom where we are planted. No small feat.
It is a strange and wonderful world. We are trying to figure out how to be a fish out of water or a bird without wings........we don't mind so much what you call us so much as long as you show us compassion and patience. Tenderness and understanding.......a little conversation that says, " I'm right here", "I am listening" and "I want to help you as much as I can", "I'm so sorry this is happening to you" goes a long long way with us. To be recognized, seen and believed, we are the very definition of what it is to have FAITH. So if you don't know about faith get to know us......we live faith everyday. It's a difficult journey, for most of us we are trying our best to stay afloat and to do it with a spirit of calm, peace.......joy.......to make lemonade out of all the lemons we've been handed..........we don't want to be no stinking oddballs, but we is......and we're alive to tell the tale..........so try to be kind and gentle and not roll your eyes or ignore us.
We're worth getting to know and worth your time........a lot of our external spunk is gone, but internally we're a very nice clan.........and we love spending time with others as we can......it's usually easier for us on line instead of live......cause stimulus does weird stuffs to us..........but we're very human. We have a lifetime of memories, experiences and ideas to share.......plus we love having connections........being a part of this big exciting beautiful world.......we just take it in much more slowly now.
Like the critters in Whoville........"we're here"........"We're Here!"........."WE'RE HERE!!!!!!!!!!!!"
Back on sleep track no 7..........meaning once I "went to sleep I stayed asleep til morning"........sounds like an advertisement for special sleep beyond the city limits of Las Vegas.
I take 6 mg of Melatonin. Years ago I took prescription sleep medications, but no longer. Melatonin helps me relax and off I drift. It may not be the right answer for others, but it is a good fit for me. Ambien gave me nightmares, Lunesta gave me limited sleep and a horrible tin can aftertaste that lasted me HOURS the next day. Ya can't brush it out or take anything to stop it.......it is time activated somehow.
Like any CFS/Fibro baby I struggle with Insomnia sometimes and have to ride it out until there is peace in the valley again...........compared to the way it was in 2010 and 2011 I am doing much much better. I am also on less prescription medication........also not working, not being as stressed, not having the outside pressures and stimuli as before helped. Plus changing my life priorities .......it all made a huge impact.
Am I still ill? Uh huh.........Will I probably always be ill? Uh huh. I don't live each day frantically hoping for the cure......I try to live the best way I can. My spirit is better able to handle things most of the time. A calmer spirit has really helped me. I used to live in such a frantic place mentally and it threw my emotions in to a constant tizzy. It was hard to call this mental mess I was in HOME. Home isn't just a physical place you live, for me it is also about perspective, thoughts, emotions........spirit..........I have to have a place of Sanctuary from the inside out.
Before I lived in such chaos...........the physical pain was so high, the level of fatigue was so intense. I fell a lot before.......a lot a lot. It was scary. Upright one minute and on the floor the next........or playing out a huge battle to try not to fall and getting hurt in the process. I also expected the worst..........I expected it. I had so many medical problems - medical emergencies and traumas.........so many losses and shocks to my system that the worst to me was normal, it all made sense.
I tried to cover up my conditions with a lot of people........that only works for about a New York Minute. People know something is wrong, but people who will stand by you.........are a rarity. At least sadly that was my experience. I was accused of all kinds of things.........not the least of them lying....it hurts and chips away at your integrity, your character........when you are so ill and it is so hard to understand not only what is happening to you, but you also deal with another big why. Why most people doubt and question and attack and belittle and roll their eyes..........it chips away at the even the strongest oak tree in the forest and it is so hard when that mighty solid oak tree cracks, shudders, topples and falls. Once the mighty oak within a sick person falls, it is very hard to get back up and stand tall again. But we try.........we are tryers.........we want to get up as often as we can. We want to LIVE.
People have a lot to learn about illness and compassion. I know I did.....when I was healthy I didn't know much of anything about the conditions that impact me now. They were just words, not realities........I don't expect the whole world to stop, drop and roll for me.......because I got sick. I just don't really understand the way people who knew me and know me ARE. This wall of quiet distant coldness.........it is a cold war in and of itself. It is painful, isolating and hurtful. It gives me great insight into what the elderly, for example, go through.........because the body is having a lot of problems.
The body becomes like a car and it has problems now with the driver as well as constant problems with the engine, tires, windshield, the doors fall off, the trunk pops open for no reason.....stuff flies out of the trunk..........,parts of the engine are missing or blow up, the hubcabs FLY.........the battery won't hold a charge, the oil has magically disappeared......the brake lights work/don't work........work/don't work. The upholstery is fraying and the stuffing is defective..........the shocks are shot......and then the next day they seem to be just fine..................the paint is coming off.........one headlight works on Tuesday and then on Thursday it's the other one.
It is hard being this car..............damn hard and having everyone keep their distance, cause you don't know what to do.......and they figure NOBODY can have this big of a lemon, ya must be making it up, it can't be real...........where are the candid cameras?????? Are we being pranked? But no......our new car body is odd, quirky, on fire.....out of sorts.......sometimes our engines run too fast and other times we simply don't start. A lot of times we try to mash on the gas and we just peter out. (mash on the gas is a southern thing.....) We have become a hypersensitive super fine tuned exotic and very expensive vehicle.
This car of ours feels PAIN.......physically - mentally - emotionally. This car is a real live person with an engine run by vital organs.......a beautiful beating heart and a pain impacted confused brain and needs help. Seeks courage and hope and direction .........please lead us to Help in Hopeville. We need to, we have to believe, we have to have HIGH HOPES.
We find that we can't run on the usual gas and we have to have optimal weather, road conditions and other mysterious factors that we are currently to foggy about to fathom into this equation. Now we try various fuels and test various factors to try and create the best conditions possible for the race we try to run each and every day.
It's not that we are so keen on being the fastest...........we are simply trying to stay on an even keel. No surprises.......no black ice, no high winds, no natural disasters, no unexpected turns or sudden need to hit the brakes. In our world this can mean anything from reactions to meds, food, the environment.....a new treatment, getting dressed........sigh..... breathing........being alive. The Bonneville Salt Flats are too hot........the North Pole is too cold, where do we belong?
The thing is that we can't just up and go anywhere, we need to bloom where we are planted. No small feat.
It is a strange and wonderful world. We are trying to figure out how to be a fish out of water or a bird without wings........we don't mind so much what you call us so much as long as you show us compassion and patience. Tenderness and understanding.......a little conversation that says, " I'm right here", "I am listening" and "I want to help you as much as I can", "I'm so sorry this is happening to you" goes a long long way with us. To be recognized, seen and believed, we are the very definition of what it is to have FAITH. So if you don't know about faith get to know us......we live faith everyday. It's a difficult journey, for most of us we are trying our best to stay afloat and to do it with a spirit of calm, peace.......joy.......to make lemonade out of all the lemons we've been handed..........we don't want to be no stinking oddballs, but we is......and we're alive to tell the tale..........so try to be kind and gentle and not roll your eyes or ignore us.
We're worth getting to know and worth your time........a lot of our external spunk is gone, but internally we're a very nice clan.........and we love spending time with others as we can......it's usually easier for us on line instead of live......cause stimulus does weird stuffs to us..........but we're very human. We have a lifetime of memories, experiences and ideas to share.......plus we love having connections........being a part of this big exciting beautiful world.......we just take it in much more slowly now.
Like the critters in Whoville........"we're here"........"We're Here!"........."WE'RE HERE!!!!!!!!!!!!"
Replies
Well written - well said & right on the money!!!
Ruthie I so agree with you 100%!!! My niece told me yesterday that I was strong, just like grandma. She kept hugging me & telling me she loved me. That I was doing the best that I could. I had tears in my eyes. She just kept telling me she loved me & will always love me with all her heart. For a second there I thought is she saying her good- byes. It scared me for a sec but she was sweet. Life is hard on the inside looking out. I want to be like everyone else & do!!!!! This is our life & life is short & precious ....so I will try what I can & live with it. Rest my sweet friend. Xoxo
Oh yea! We\'re HERE! I actually read this twice. It explains so well what it\'s like to be \"us\"!
When I first became ill with CFIDS, someone gave me a writing called \"An Open Letter About CFS\"...pretty sure that was the title, anyway...it said sort of the same thing as you are trying to explain here. Telling people that don\'t have pain and chronic illness to try to \"get it\" or get out! In a nice way...but yet, I felt it was sarcastic! I would never hand anyone a paper like that. It didn\'t deal kindly with those who have no education into our illness. It kinda just shouted that \"normals\" are insensitive creeps.
I don\'t feel that way. I don\'t. I think they can only be held responsible for what they KNOW. WE have to tell them. This journal is a perfect way to do that. Compare us to a car. PERFECT. Every example was spot on. And this way of explaining \"us\" to others is kind. Yep, it\'s easy to hear. The reader wouldn\'t feel as though he had best cut connections with you because you must be from outer space. NOPE! This letter is good.
Thank you for speaking for all of us with this, Ruthie. I\'m going to read it to Bobby now. He\'ll shed a tear. I know it!
You\'re there! You\'re there! You are just such a masterful writer. Haven\'t I told you this before? Writing is great therapy, an outlet. I\'m hoping my mom will start to journal and draw. Have a journal book and a art kit for a couple of her little xmas gifts....we\'ll see. Any who, there in Whoville, you are an inspiration and I love visiting with you....xo
you write so well, as everyone keeps telling you, Keep on telling it like it is, we need your truths out there :) I\'m glad for our new friendship too!