Coping with chronic pain and dealing with life is really exhausting . I usually have relatives say things like wow you really seem ok to me, or you look fine , you look good you must be ok ! After 14 years of coping with pain without any pain relief I'd have to say I've become the champion of disguise . They can't see bloody guts and immediately assume I am fine. They have no clue I have been suffering in silence . For many years .
When my mom ended up in the hospital for an entire week some of my relatives were talking about genetics and how this daughter has a sore finger and how trigger finger runs in the family and another relative says her finger is sore and sometimes it's hard to bend it . I sat there quietly , said absolutely nothing . I'm thinking to myself , are they kidding me ? Are they that forgetful or are they self self absorbed ? No they didn't forget , I drove in the car with them and used my handicap plaque so I didn't have to walk as far , and my scooter wouldn't have fit in the ICU ! Such bizarre behavior , I have no problem talking about their sore fingers and feet , or whatever hurts them but I keep quiet and I often feel hesitant and unsure about chiming in on their conversation!
I'm tired tonight , tired of pretending and acting like I'm OK. I'm tired of keeping it together , struggling to get through daily activities and being asked to do special tasks because I don't work and hearing how the other relatives work and are so tired . How can I respond to that ? I don't doubt they are tired . I feel as though some of them just don't want to acknowledge my reality . I'm expected to suffer in silence , alone . I have to keep up this nonsense that I'm ok and not talk about the pink elephant that is sitting on my lap for the past 14 years of my life . That I can't get up out of bed in the morning and I need a scooter to shop - maybe that's too embarrassing for them ? Maybe I embarrass them ?
Tuesday, April 5, 2016
Wednesday, March 23, 2016
Suffering alone...
I find myself suffering a lot, in silence. My amazing husband deserves to be recognized, awarded for being not only a hard worker, an amazing dad, but also an amazing husband and caretaker of me, his wife. He has always adored me regardless of what I look like, and has been behind me 100% of the time. This man will bend down and pick me up off of the floor when I cannot get up. He will wash my hair for me, help me get dressed, and drive me many miles just to drop me off at my moms house when I cannot drive. I dont stay silent because I'm worried about him being upset, I often feel like a burden. And I, too, get sick and tired of sounding like a broken record. Seriously, how many times can he ask, whats wrong, and I answer, my ankles and feet feel like they are being stabbed to death. It gets old, hearing about the same thing over and over again, year after year.
How do others cope with this much suffering and still enjoy their life? How do you continue with a normal life when you have uncontrolled pain? And when I go to lunch or dinner, the last thing I want to talk about and focus on are my feet. But at the same time, when you are the one suffering, it seems to be almost impossible not to talk about it, or even worse, pretend its not happening, and suffer in silence. You dont really know if another person is suffering, because I am here to tell you its perfectly possible to fool everyone. I may seem aloof, detached, my mind someplace far, far away, I may not answer a question correctly being overwhelmed with chronic pain, but I want to be a better person, and I want to make others aware that you never really know is someone is suffering with some disease, trying to be like a chameleon, and trying to fool even themselves.
How do others cope with this much suffering and still enjoy their life? How do you continue with a normal life when you have uncontrolled pain? And when I go to lunch or dinner, the last thing I want to talk about and focus on are my feet. But at the same time, when you are the one suffering, it seems to be almost impossible not to talk about it, or even worse, pretend its not happening, and suffer in silence. You dont really know if another person is suffering, because I am here to tell you its perfectly possible to fool everyone. I may seem aloof, detached, my mind someplace far, far away, I may not answer a question correctly being overwhelmed with chronic pain, but I want to be a better person, and I want to make others aware that you never really know is someone is suffering with some disease, trying to be like a chameleon, and trying to fool even themselves.
In a fog....
I get up in the morning, barely able to roll out of bed. I slowly allow my feet to hit the ground and reach for the dresser or the bed frame to hold me up. Sometimes my hands are so bad they wont open, or close to grab things, so I end up with bruises. There have been days where Ive had to roll out of bed, onto the floor and have to crawl to the bathroom. My ankles swell and no longer look like ankles, so bad I have stretch marks on them. Ironically, I have a walker, that I sometimes have next to my bed, but I fight within myself about using it.
I wonder how I will manage to actually walk the dogs, they have to be walked, I think to myself the second I wake up. We live in an apartment, no place for them to go potty. Each step I take, I wonder how I will continue walking, and I will get maybe one block away, and wonder how I will make it back home.
I put pressure on myself, to try and walk. If I cannot walk I feel like I have lost this 14 year battle. Most of the time I feel like I am walking in a fog, my memory from having chronic pain is getting bad. Ive never had pain relief, and I fear it is taking its toll of my entire being. I feel different than everyone else, half the time I speak I am trying to keep myself focused on the subject instead of thinking about how I am going to continue to walk, or cook, or simple things like continue to have a conversation.
It amazes me what I think about during one day, that most people may not think about, ever. I see people out walking, jogging, read about my friends taking Yoga, or lifting weights, hitting the gym, taking some 60 day test to lose 20 pounds. I find myself thinking, how lucky they are and how they dont have a clue how quickly this freedom can be snatched away from a person, the freedom to walk, to get out of bed, to wash your hair, to get dressed. In general people say I look great, but when I look in the mirror I see this woman, who is consciously trying to stay conscious. To blend in with the others, but in doing so, the enjoyment of life is often gone. I am so focused on feeling good and looking the same as everyone else, I lose track of what is being said, I cant focus on topics, and I find myself drifting away trying to continue to smile, to speak and appear to have it altogether. I get lost in conversation, all the time. I say things I really dont mean, because I feel like I am just trying to stay afloat. What I want to say is in my head, I just cant seem to get it out.
I realized I sigh a lot, my oldest son had thought I was annoyed with something we were doing together, and I had to think about what he said, while my husband answered saying, she is in pain. I hate this part of myself, the part that cant seem to keep up with an entire day. I am sighing because of the pain, trying to continue to function and really wanting to be part of the commotion, the cooking, the talking and enjoyment.
Chronic, uncontrolled pain, meaning I do not take any drugs for pain, really has taken a lot from me, and I feel angry about that.
I wonder how I will manage to actually walk the dogs, they have to be walked, I think to myself the second I wake up. We live in an apartment, no place for them to go potty. Each step I take, I wonder how I will continue walking, and I will get maybe one block away, and wonder how I will make it back home.
I put pressure on myself, to try and walk. If I cannot walk I feel like I have lost this 14 year battle. Most of the time I feel like I am walking in a fog, my memory from having chronic pain is getting bad. Ive never had pain relief, and I fear it is taking its toll of my entire being. I feel different than everyone else, half the time I speak I am trying to keep myself focused on the subject instead of thinking about how I am going to continue to walk, or cook, or simple things like continue to have a conversation.
It amazes me what I think about during one day, that most people may not think about, ever. I see people out walking, jogging, read about my friends taking Yoga, or lifting weights, hitting the gym, taking some 60 day test to lose 20 pounds. I find myself thinking, how lucky they are and how they dont have a clue how quickly this freedom can be snatched away from a person, the freedom to walk, to get out of bed, to wash your hair, to get dressed. In general people say I look great, but when I look in the mirror I see this woman, who is consciously trying to stay conscious. To blend in with the others, but in doing so, the enjoyment of life is often gone. I am so focused on feeling good and looking the same as everyone else, I lose track of what is being said, I cant focus on topics, and I find myself drifting away trying to continue to smile, to speak and appear to have it altogether. I get lost in conversation, all the time. I say things I really dont mean, because I feel like I am just trying to stay afloat. What I want to say is in my head, I just cant seem to get it out.
I realized I sigh a lot, my oldest son had thought I was annoyed with something we were doing together, and I had to think about what he said, while my husband answered saying, she is in pain. I hate this part of myself, the part that cant seem to keep up with an entire day. I am sighing because of the pain, trying to continue to function and really wanting to be part of the commotion, the cooking, the talking and enjoyment.
Chronic, uncontrolled pain, meaning I do not take any drugs for pain, really has taken a lot from me, and I feel angry about that.
Tuesday, March 22, 2016
Knowing humility
I finally had to get a scooter, a cute little 3 wheeled Go-go scooter! I park it in the living room, afraid someone will steal it out of my car and its taken so long to finally break down and buy it, I figure if someone steals it I may never get up enough nerve to buy another one.
I cant deny it was amazing, scooting around the mall over the Holiday, being able to shop for hours, looking at everything, and not being tired. My hands hurt using the scooter but because my feet are at rest I am not suffering with foot and ankle pain.
I get a lot of looks. Kids stare, people look at me, trying to figure out whats wrong with me. I am obviously not on this scooter because I'm too heavy to walk. Most people are helpful when I'm riding it, some are too helpful which annoys me, and I think to myself that most of these people would not even notice me if I were not on this scooter.
Parking in the handicapped spot without my scooter, old ladies have yelled at me, asking me whats wrong with me, but when I have my scooter, nothing is said, no strange looks questioning my ability.
Humility is getting on this scooter, at my age, and going shopping. Accepting what I cannot change, and trying to enjoy myself regardless of the status of my body not working. Vanity is on the side lines, testing me each and every day. Remembering what the nuns taught us in Catholic School, that whats on the inside is more important. Somehow, I struggle with this, its a battle of my self image, something I have already been struggling with my entire life, and now to add to the mix a little red scooter that makes me stand out, makes me look weak in my mind, I am no longer standing on my own two feet.
I hate losing control, I hate not being able to walk. But somehow I need to find the strength to move forward and accept what I cannot change.
I cant deny it was amazing, scooting around the mall over the Holiday, being able to shop for hours, looking at everything, and not being tired. My hands hurt using the scooter but because my feet are at rest I am not suffering with foot and ankle pain.
I get a lot of looks. Kids stare, people look at me, trying to figure out whats wrong with me. I am obviously not on this scooter because I'm too heavy to walk. Most people are helpful when I'm riding it, some are too helpful which annoys me, and I think to myself that most of these people would not even notice me if I were not on this scooter.
Parking in the handicapped spot without my scooter, old ladies have yelled at me, asking me whats wrong with me, but when I have my scooter, nothing is said, no strange looks questioning my ability.
Humility is getting on this scooter, at my age, and going shopping. Accepting what I cannot change, and trying to enjoy myself regardless of the status of my body not working. Vanity is on the side lines, testing me each and every day. Remembering what the nuns taught us in Catholic School, that whats on the inside is more important. Somehow, I struggle with this, its a battle of my self image, something I have already been struggling with my entire life, and now to add to the mix a little red scooter that makes me stand out, makes me look weak in my mind, I am no longer standing on my own two feet.
I hate losing control, I hate not being able to walk. But somehow I need to find the strength to move forward and accept what I cannot change.
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