Well, it’s after 11am, and I just woke up…and don’t want to be up
now. This is a regular occurance due to my chronic pain issues. Maybe I
should just entitle this blog “A day in the life of a pain stricken
woman” The pain is sometimes so intense…you can’t take a deep breath,
you can’t move, you can’t even cry. That was last night. It feels very
much like there is a knife in your belly just moving around cutting and
jabbing at your innerds…alongside a blowtorch that is joining in on the
fun. Then add to that the spasming of your feet a the nerves, damaged by a lifetime of diabetes, pulse and throb with each heart beat and the fire that burns in the small of your back the best you can do is stare at the clock and hope relief will come soon.
On these many nights being on the pain rollercoaster, I try to read or do needle crafts…if I can concentrate through the pain. Or surf the net trying to find pain control ideas. Or just lay and pray. Alot of praying. Trying to make “deals with my deity”…you know, like “Please Goddess..just end the pain that I am in! If I am not doing any good on Earth, please just take me home with you!”…so far She hasn’t taken me up on that offer, so either She believes I am or will be of some good on this Earth. I try the meditation techniques…the deep breathing is hard because it hurts to take really deep breaths…but I do what I can. Visualization is nice…I picture laying on a warm sandy beach with the waves lapping at the shore, smelling the salty air, sipping a cold margarita, watching the tanned surfer dudesssssssssssss…uh ahmmmm….never mind….lol.
These nights of pain are very lonely. VERY lonely. I sometimes feel like I am the only person on the planet dealing with this suffering. I know of course that I am not, but at night it sure feels that way. I have friends on facebook who also suffer with various chronic pain conditions…and I thank the Goddess for them everyday! This is why the computer has become my lifeline in a sense…they are the only people I “know” who are like me. With only two exceptions, No one in my real world suffers with the intense pain that I do on a daily basis.
Pain year after year changes you as a person. You have to live differently. You can’t always do what you want to do when you want to do it. You are a slave to your pain. You may want to go take a walk…but your body says “No way sweetie!”…you may want to go shopping, and you DO! Then about 20 minutes in your body goes “PUNISHMENT TIME!” and there you are, standing in the middle of WalMart with a cart of stuff and you suddenly can’t move due to the pain…so you stand there with this look of constipation, not moving…sweat breaks out…you begin to panic, wondering how you will manage to walk up to the registers and check out…or just ditch the cart and get to the car…I feel embarrassed…like others are staring at me…so anxiety kicks in, the adrenaline makes me move slowly to the register as if nothing is wrong with me…I check out and make it to my car and start to cry as I drive home…and cry all the way…not caring that the people in cars beside me can see.
On the days or nights when I am having a pity party…I feel like living with “Invisible Diseases” is very different from other ailments…If I have my legs amputated….people can see it and feel empathy…if you have cancer people KNOW what that means. But with Adhesions, Fibro, Antiphospholipid Syndrome, Neuropathy, tendinitis, plantar faciitis, hernias, degenerative disk disease, arthritis, migraines, diabetes….people can’t SEE these illnesses…they may not even know of them…and when you are like me, who have more than one of those ailments you feel like a lonely little freakshow, that no one understands. I often get mad at The God and the Goddess, , I am ashamed to say…and I scream “Why me? Why do you hate me? Why so many health problems at once? “…I keep feeling there is a reason for all this physical suffering….and I am on the path to figuring that out. I could deal with most of the issues…it’s the damaged nerves and joints that cause me the most horrible pain….but, as just about everyone says, Your Gods wouldn’t let me deal with all this trauma if he didn’t think I could handle it…so they must REALLY have confidence in my inner strength! lol!
I just dream of being normal again. Of being able to make plans with friends a few days in advance, and not having to cancel due to pain levels…you do that enough with friends, and they stop trying to make plans with youl. Tired of being asked “How you feelin today?”…because the way I feel rarely changes…although there are “tolerable days” “bad days” and “horrible days” so I guess I have a few to choose from. I wish I c ould eat a big juicy steak with corn on the cob followed up by a huge slice of strawberry pie washed down with pure sweet southern tea. I wish I didn’t need the scooter , wheel chair or power chair to move.. I wish I didn’t have to swallow 11 pills or more every day. I wish I could be more active, without suffering afterwards. I wish my belly didn’t buldge out. I wish even SOME of the pain would go away!
I worry too about the consequences of taking all these meds I am on. I am only 46 years old…taking all these pills for the next 30 years isn’t gonna make my liver very happy…not to mention, my body will build up a tolerance to these pain meds…then what happens? I am on really strong doses already…what do we go to in 10 or 20 years? It’s these things and more that fill my mind at night. But, then its daylight again…I suck it up and pretend to be one of the “normals” and go on with life. There are people out there worse off than me for sure. Atleast I have a roof over my head, food to eat, family/friends, clothes, and this computer to keep me in touch with friends! With all this crap that I whine about, I do know that I have much to be thankful for and I thank tmy God and Goddess each and everyday for all of it. I guess my deal is, I just wish for a way to make others understand what people with invisible illnesses are dealing with…little daily activities that some take for granted…are a struggle for us…shaving your legs, getting in and out of the car, getting clothes in and out of the washer/dryer, standing and doing dishes, carrying a case of soda, going to the bathroom (yes I just told that), walking for more than 5 minutes, picking up small children/animals, reaching for something above your head, bending to pick up something off the floor, pushing a vacuum, dancing, just getting up from bed (I must roll onto my side and grab the rail to pull myself up), blowing your nose, sneezing, crying…and worst of all laughing. I love to laugh…and now when I do…it brings physical pain. I used to laugh until I cried…now I try to avoid that, because it hurts so much. .I still laugh of course…and once in awhile even to the point of tears…but its painful.
I keep looking ahead though. The future is gonna be better. I learn ways of dealing with all of it. I know when to rest (mostly)…luckily I love to read and play on the puter! I am learning to not mind being a “homebody” for some people that would be unbearable. I try to focus on my wonderful husband and the family he brought into my life. They accept me as I am even with the limitations, love me and support me, not everyone has that. I am not alone, even in the night I can hear my Mutty breathe next to me, reach out and rub my leg letting me know that while he might be sleeping he is there with me if I really need him. I have more than once woken him up because I was hurting and just needed him to sit with me for a while or to take a day off work to spend it in the house with me simply because I could not bear being home alone that day. I have a wonderful friend who also suffers from a silent illness that makes time every day to see how I am and does not get upset if I have to cancel an event due to my disabilities. She dropped her life to be with me when we thought the surgeon was going to take my leg. She climbed onto the bed and sat holding me as I cried my heart out --weeks and months of being in and out of the hospital with 8 different surgeries finally becoming just too much to deal with.
So, that’s how I will end this blog. I don't know if I will push the publish button sometimes that is scarier than the pain--opening up and saying to the people who only see the side of you that pretends all is well all the time is really a fake costume just like my Halloween Witch Outfit. Opening myself up to be torn apart by people who don't understand or who think they are better than I am because I cannot work anymore--if I could I would be right back out there working 60 hours a week and loving every minute of it but when your body is breaking down and you can no longer stand up without having to talk yourself into it then it is time to consider the safety of those around you in the workplace and sometimes that means saying goodbye to co-workers and in my case, patients whom I dearly loved. Sometimes a person needs to surrender and accept. Surrender comes when y ou no longer ask, “Why is this happening to me?” Acceptance of the unacceptable is the greatest source of grace in this world.I am not quite graceful yet, but I am trying to work towards it. Slowly and painfully.
On these many nights being on the pain rollercoaster, I try to read or do needle crafts…if I can concentrate through the pain. Or surf the net trying to find pain control ideas. Or just lay and pray. Alot of praying. Trying to make “deals with my deity”…you know, like “Please Goddess..just end the pain that I am in! If I am not doing any good on Earth, please just take me home with you!”…so far She hasn’t taken me up on that offer, so either She believes I am or will be of some good on this Earth. I try the meditation techniques…the deep breathing is hard because it hurts to take really deep breaths…but I do what I can. Visualization is nice…I picture laying on a warm sandy beach with the waves lapping at the shore, smelling the salty air, sipping a cold margarita, watching the tanned surfer dudesssssssssssss…uh ahmmmm….never mind….lol.
These nights of pain are very lonely. VERY lonely. I sometimes feel like I am the only person on the planet dealing with this suffering. I know of course that I am not, but at night it sure feels that way. I have friends on facebook who also suffer with various chronic pain conditions…and I thank the Goddess for them everyday! This is why the computer has become my lifeline in a sense…they are the only people I “know” who are like me. With only two exceptions, No one in my real world suffers with the intense pain that I do on a daily basis.
Pain year after year changes you as a person. You have to live differently. You can’t always do what you want to do when you want to do it. You are a slave to your pain. You may want to go take a walk…but your body says “No way sweetie!”…you may want to go shopping, and you DO! Then about 20 minutes in your body goes “PUNISHMENT TIME!” and there you are, standing in the middle of WalMart with a cart of stuff and you suddenly can’t move due to the pain…so you stand there with this look of constipation, not moving…sweat breaks out…you begin to panic, wondering how you will manage to walk up to the registers and check out…or just ditch the cart and get to the car…I feel embarrassed…like others are staring at me…so anxiety kicks in, the adrenaline makes me move slowly to the register as if nothing is wrong with me…I check out and make it to my car and start to cry as I drive home…and cry all the way…not caring that the people in cars beside me can see.
On the days or nights when I am having a pity party…I feel like living with “Invisible Diseases” is very different from other ailments…If I have my legs amputated….people can see it and feel empathy…if you have cancer people KNOW what that means. But with Adhesions, Fibro, Antiphospholipid Syndrome, Neuropathy, tendinitis, plantar faciitis, hernias, degenerative disk disease, arthritis, migraines, diabetes….people can’t SEE these illnesses…they may not even know of them…and when you are like me, who have more than one of those ailments you feel like a lonely little freakshow, that no one understands. I often get mad at The God and the Goddess, , I am ashamed to say…and I scream “Why me? Why do you hate me? Why so many health problems at once? “…I keep feeling there is a reason for all this physical suffering….and I am on the path to figuring that out. I could deal with most of the issues…it’s the damaged nerves and joints that cause me the most horrible pain….but, as just about everyone says, Your Gods wouldn’t let me deal with all this trauma if he didn’t think I could handle it…so they must REALLY have confidence in my inner strength! lol!
I just dream of being normal again. Of being able to make plans with friends a few days in advance, and not having to cancel due to pain levels…you do that enough with friends, and they stop trying to make plans with youl. Tired of being asked “How you feelin today?”…because the way I feel rarely changes…although there are “tolerable days” “bad days” and “horrible days” so I guess I have a few to choose from. I wish I c ould eat a big juicy steak with corn on the cob followed up by a huge slice of strawberry pie washed down with pure sweet southern tea. I wish I didn’t need the scooter , wheel chair or power chair to move.. I wish I didn’t have to swallow 11 pills or more every day. I wish I could be more active, without suffering afterwards. I wish my belly didn’t buldge out. I wish even SOME of the pain would go away!
I worry too about the consequences of taking all these meds I am on. I am only 46 years old…taking all these pills for the next 30 years isn’t gonna make my liver very happy…not to mention, my body will build up a tolerance to these pain meds…then what happens? I am on really strong doses already…what do we go to in 10 or 20 years? It’s these things and more that fill my mind at night. But, then its daylight again…I suck it up and pretend to be one of the “normals” and go on with life. There are people out there worse off than me for sure. Atleast I have a roof over my head, food to eat, family/friends, clothes, and this computer to keep me in touch with friends! With all this crap that I whine about, I do know that I have much to be thankful for and I thank tmy God and Goddess each and everyday for all of it. I guess my deal is, I just wish for a way to make others understand what people with invisible illnesses are dealing with…little daily activities that some take for granted…are a struggle for us…shaving your legs, getting in and out of the car, getting clothes in and out of the washer/dryer, standing and doing dishes, carrying a case of soda, going to the bathroom (yes I just told that), walking for more than 5 minutes, picking up small children/animals, reaching for something above your head, bending to pick up something off the floor, pushing a vacuum, dancing, just getting up from bed (I must roll onto my side and grab the rail to pull myself up), blowing your nose, sneezing, crying…and worst of all laughing. I love to laugh…and now when I do…it brings physical pain. I used to laugh until I cried…now I try to avoid that, because it hurts so much. .I still laugh of course…and once in awhile even to the point of tears…but its painful.
I keep looking ahead though. The future is gonna be better. I learn ways of dealing with all of it. I know when to rest (mostly)…luckily I love to read and play on the puter! I am learning to not mind being a “homebody” for some people that would be unbearable. I try to focus on my wonderful husband and the family he brought into my life. They accept me as I am even with the limitations, love me and support me, not everyone has that. I am not alone, even in the night I can hear my Mutty breathe next to me, reach out and rub my leg letting me know that while he might be sleeping he is there with me if I really need him. I have more than once woken him up because I was hurting and just needed him to sit with me for a while or to take a day off work to spend it in the house with me simply because I could not bear being home alone that day. I have a wonderful friend who also suffers from a silent illness that makes time every day to see how I am and does not get upset if I have to cancel an event due to my disabilities. She dropped her life to be with me when we thought the surgeon was going to take my leg. She climbed onto the bed and sat holding me as I cried my heart out --weeks and months of being in and out of the hospital with 8 different surgeries finally becoming just too much to deal with.
So, that’s how I will end this blog. I don't know if I will push the publish button sometimes that is scarier than the pain--opening up and saying to the people who only see the side of you that pretends all is well all the time is really a fake costume just like my Halloween Witch Outfit. Opening myself up to be torn apart by people who don't understand or who think they are better than I am because I cannot work anymore--if I could I would be right back out there working 60 hours a week and loving every minute of it but when your body is breaking down and you can no longer stand up without having to talk yourself into it then it is time to consider the safety of those around you in the workplace and sometimes that means saying goodbye to co-workers and in my case, patients whom I dearly loved. Sometimes a person needs to surrender and accept. Surrender comes when y ou no longer ask, “Why is this happening to me?” Acceptance of the unacceptable is the greatest source of grace in this world.I am not quite graceful yet, but I am trying to work towards it. Slowly and painfully.
I feel exactly the same way. Your entry made me cry. For you and also with you. Because I UNDERSTAND EXACTLY WHAT YOU'RE FEELING. I've felt it too. Your goddess put you here to lead and inspire others withsimilar issues. To touch the hearts of others with your hearts abundant warmth. How many nights have you also been a beacon of hope and light for your friends in their own dark hours of sleepless nights? Or in their own tortured pain filed day? Xoxoxo
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