May 10, 2016
Lymies talk about pain. Sure, we all have been in pain. So, I will do my best to explain what the pain is like.
IS LIKE.
The damage to my brain and my organs has left me with chronic pain. I have pain to this day.
Everyday.
I can cope with it. I don't take painkillers or do much. This is because for 15 years nothing worked. You just cope.
Writing this right now, I have burning across my face and the tips of my shoulders are numb. It's my neuropathy - a friendly reminder that Hell is real.
To explain pain to someone, you always need to start with a common trauma. Different people feel pain differently. Sometimes people try to say things aren't that bad - but we all feel pain. I will do my best to describe and find common ground for what it felt like.
What is (not) funny is a lot of Lymies describe the pain in the same way.
Here I was one month before getting my diagnosis and starting treatment - which all happened in June 2007. I made it to the Rocky statue. I couldn't stand like most people you will see posing by good ol' Rocky.
I will say, I am a super connoisseur of pain. As you read these words you have to think more than just the pain - you have to think of the texture, the weight and the motions of it. You have to remember this pain does not go away. It is all happening at once.
I would sometimes tell women it's like having the worst cramps you ever had ALL over you body and not just in your uterus. The actually cramps - not all the other period junk. Just the cramps - all over. If you have ever throw up and been crippled by menstruation cramps. . .yep, it's like that. But all over your body.
I would tell men it was like the worst flu you ever had in your life. But all your symptoms are concentrated on your skin and in your bones and muscles. That flu ache - make it 100-times worse, all over, saturate it with intensity and live that way for 15 years.
First - Painkillers
I was never on painkillers for a few reasons. . .
I was taking a lot of medications. Maybe 20 at a time, and throwing in something to make me comfortable was not worth the risk of other interactions or side effects. "Quality of life" was often not the biggest concern. Treatment and surviving is not about pain, it is about living. It doesn't matter how much you hurt, it only matters you are still alive.
I would have needed more and more and stronger and stronger stuff and I didn't want to become depended on something. Nor did my family.
Remember, too, I had tick-borne illnesses. Or rather - I had "things that don't exist." You cannot give someone with "things that don't exist" painkillers.
If I had cancer or a mangled bone, I could. For tick-borne illnesses, you get nothing.
In fact, many mainstream doctors suggest not getting treatment because it is more painful than the disease. That you don't have. Strong painkillers draw attention to the Lyme Literate Doctor (LLD) and that might cause the doctor to be unable to practice - so, you just gotta deal.
Also, I was out of it, mentally. I was so use to being in pain all the time, I was apathetic. Lymies have the "stare" - your brain just shuts off and everything gets harder to access in your brain from emotions to thoughts to comprehension of surrounds and the universe.
If I hadn't been working (Oh yes, I went to work everyday) and didn't have people forcing me to engage in life, I would have been staring at a wall for 23 hours a day. I would have forgotten what I was doing in that 24 hour.
Pain was just part of life. It gets easier in some ways, you just don't talk about it because. . .why? Why bother? It doesn't make it better and it takes so much energy to explain. Sometimes pain would be bad in one place in your body then it would move in quality or size - that was the best thing ever. When one part of you got a break. You were always in pain, just. .different qualities and textures.
The Don't Touch Me
I use to think people were really rough with me. I also thought I was just a pansy. People hug and rub on each other all the time and enjoy it. I was such a weakling, I couldn't handle simple touch.
The effects of 10 years of, "It's all in your head" and "it's all your fault" never go away even after you get a diagnosis and are in treatment.
My Dad would often come by me and my brother and give us a little shoulder grab and rub. It was a nice thing, like a quick hug because human like physical touch. I would cringe and just get through it. But, I know it was affection. Hugs hurt so bad.
I was and am not affectionate because it just HURT. And it hurt for days or week after contact. I did finally tell my Dad it hurt - and he used the softest touch but it still hurt. I still wanted contact with people but they could tell how I was repulsed. To this day, people believe me to be highly not-affectionate - because in four years I have not been able to completely undo the thought process of, "hang on, this is going to hurt!"
This extends to scratching myself, as well. Every have an itch? You probably just scratch it. I had an itch and I had to weight the pros and cons - itch it and possibly trigger a week long bout of pain throughout my body or let it go. The catch is, sometimes the itch would turn into burning and a week long bout of pain.
I learned I had to endure this quietly because people don't believe you or tell you to suck it up. It's not their fault - they have no idea what it's like.
That's why I am blogging.
Clothes & Skin
Clothes hurt. My bra was made of knife blades that were cutting into my bones. Once the blades were in the bone of my rib or spine, they would just cut away at my skin and gnaw deeper into the marrow with every movement. T
he eye hooks in the back of my bra - I felt those like little knives.
Clothes hurt. Jean pockets were extra pain and bulk. Elastic on socks was always too tight. My toes were numb from too-tight shoes. The tops of my feet hurt from too thin shoes. I didn't have enough padding on my shoes, so my bones rattled in pain with every step.
Naked - sure! Nope.
I would tell my Mom, "The weight of my skin hurts." That was the best way to start. My own body hurt my own body. My skin were epic gym mats wrapped around my body, crushing everything under it.
A simple flick of my wrist or touch would set forth a month long struggle of pain that moved up and down the point of contact to every cell.
My doctor once touched me and I said "ow" and he showed me how hard he had touched me. It was no more than a puppy-paw weight. It was nothing. It felt like a full on punch.
This was my daily amount of pain.
When I was a child, I use to wake up stiff and in pain. I hated it but I told myself I must be a superhero at night - I must somehow leave my bed and run around the world fighting evil and then when I come back, I have no memory. That's why it always felt like I was tired and my body felt full of bruises.
I was 9 and it was 1989 when I doodled about that. When my teachers told me how I needed to focus more. Apply more. Be smarter. I just wasn't. . .getting it.
The Crowbar
One summer, once I was quite better, I went fishing with my Dad and Uncle. My Uncle was moving a cinder-block, and it ended up falling and cutting down the front of his leg. I remember by Dad's reaction, turning away and cringing. And I looked at my Uncle, writhing at having this cement block having sliced down his shin. . .and I was like, "Does that hurt?"
That was not a good reaction. I feel bad about that reaction. I feel bad that I felt like my Uncle and Dad needed to suck it up and help get stuff together and not dick around. Sorry, guys.
I would have pain on the front of my lower legs. It felt like someone had taken a crowbar and with as much force as possible, hit my legs over and over. It felt like the bones were splintering and breaking. Someone once said it sounded like shin-splints but since I never ran or did anything. .well. .nothing else would have caused that amount of pain.
I was ok with this pain because it was centralized on the bone. It was a blunt pain. It was an appendage, my legs. It was easy to deal with. I could cope best with this type of pain because it didn't diffuse or melt into other parts of my body. That pain was there or not.
The Butter Knife
I would get pain in my back - once said to be bursitis.
It felt like someone had taken a butter knife and was trying to lift my scapula from the rest of my body.
Like when you try to force open an oyster or clam.
You jam that knife in between and rattle it around and yank it and then use as much leverage as possible to get it up. But, my bones won't give so I just have this knife in my back. And it's UNDER the bone so I can't get any relief because the bone is blocking any heat or cold.
This was bad. The butter knife moves around a lot back there, in both shoulders. I told myself when it was happening, I just had to get through maybe three days of it. Then something else would hurt a lot more and that would be relief.
The Beam Drop
Your hip is a ball-and-socket joint, did you know that? I felt the ball grind into the socket. The bone felt rough, like someone pounded nails through my hip bone so the ball part of my leg were being ground into these nails.
The top of my hip felt as if someone had taken a bar of metal and dropped it on the top.
BAM!
Right on the top of my hip bone. It would seep the rest of my pelvis. Before I was diagnosed, I use to think I was one of those rare women would could feel themselves ovulating because of the pain.
It really sucked. I would often have it worse in one hip than the other hip. So it was a welcomed break when it adjusted.
Thanks, WiseGeek.com for this photo and article on What is Beam Deflection.
The Shot Gun Blast
I had this single point of very sharp pain in the front of my chest in my shoulder. As if someone touched you with the point of their finger. Right? So, very sharp pain there and then the entire back of me would feel as if it had been blown out. It was as if a bullet had entered through my shoulder and took out my entire shoulder, ribs and back. It was raw, hot and screaming.
This was also really bad, and a bad day was Shot Gun Blast with Butter Knife. You'd think they couldn't go together. .and yet.
The Acid Cotton or Plasma Ball
Under my skin and IN my bones I would feel pain.
I first thought of it as if you took some fluffy cotton but the cotton was acid. I sometimes called this the "fuzzy pain." It was quite burny and sharp - as if this fluffy cotton was floating inside my bones and when the little flecks of fuzz touched the inside of my bones, it would burn and spark and hurt.
When I got a little more brain back and re-learned what a plasma ball was - that was what it was. Where those little tendrils hit - PAIN.
This was the most annoying pain. It hurt that the cotton was floating there - but I never knew when it would burn against the inside of my bone and I never knew for how long. It would move up and down my bones, under my skin.
To this day, when I see those plasma balls, I cringe. Ick. thanks Apogeekits.com for the picture.
Fluid Pain
For my knees, I got a lot of pain in the sides of my knees and the back. It felt as if they were filled with acid - like a bag of low-level acid.
I did have fluid build up in my knees. You could feel the pocket of it behind my knee and that physically hurt. I did have enough inflammation to cause fluid build up - so, there was physically something there. Not much could be done about that.
Neuropathy
I still have neuropathy from all the illness and treatment. My nerves and brain are damaged and part of the manifestation is pain.
I originally had the numbness. I would amuse and/or wonder what was wrong when I would shove push-pins into the back of my shoulder and feel nothing. I actually had someone else do it to me once. I felt nothing. Whole patches of my skin and underlining body were numb (minus the pains above).
The first time I had the burning, it was winter. Thinking I was actually burning, I ran outside and lay in the snow. I was freezing and shaking and numb and through all of that, I was on fire. My skin felt as if it was covered in burning oil.
My muscles then went weak and the brain fog came on and. . .you just keep going on with your life.
It always starts the same, like a bad sunburn. Imagine the worst sunburn you had just cresting across your face. Then it just gets worse and worse.
Or if you burn yourself - which I have done on the oven plenty of time - when you get the mark. Hot, then maybe nothing for a minute, then it starts slow and smooth and then just keeps spreading over your skin and melts into your muscles like a wildfire of pain.
Or when you jump in a hot shower and it is WAY to hot and you scream and leap away - it's the moment you scream that I lived in.
I lived (and live) with this screaming, burning pain sitting on my skin for however long it takes.
I still get it a couple weeks a month. Sometimes if you see me, I'm just sitting there with acid flowing over my skin. Nothing I can really do about it. What I do try to do is move because it can lead to my muscles tightening and that's just double problems.
I will say hot tubs - they are fantastic! I back when I first got into a couple when I was sicker, I got maybe 20 minutes of pain-freeness from a very hot soak. But, it's a wonderful 20 minutes. Heat therapy for chronic pain is a thing that should be embraced!
I think the crappiest thing about neuropathy, I am not actually hot. As I learned the first time, I can use this like a super power to deal with something very cold.
After about an hour of intense burning, I get the fatigue. It's exhausting feeling this pain - I'm sure my body is trying to fix it. You just have to endure it. And pretend everything is ok.
Lyme is the great imitator, and it makes great imitators out of us all. At least, today, I do not deal with this everyday. Normally only a few weeks a month at most. And I can have whole months off. Right now, writing this. . .it's on like donkey kong across my face and across my back.
As with all things with Lyme - you need to have a split mind. You need to have to save part of your mind to live a normal life, to make plausible excuses for why you can't do things to the outside world and pulling it together to be in that world. Then you have the other part of your brain doing everything it can to cope with the illness and treatment.
IS LIKE.
The damage to my brain and my organs has left me with chronic pain. I have pain to this day.
Everyday.
I can cope with it. I don't take painkillers or do much. This is because for 15 years nothing worked. You just cope.Writing this right now, I have burning across my face and the tips of my shoulders are numb. It's my neuropathy - a friendly reminder that Hell is real.
To explain pain to someone, you always need to start with a common trauma. Different people feel pain differently. Sometimes people try to say things aren't that bad - but we all feel pain. I will do my best to describe and find common ground for what it felt like.
What is (not) funny is a lot of Lymies describe the pain in the same way.
Here I was one month before getting my diagnosis and starting treatment - which all happened in June 2007. I made it to the Rocky statue. I couldn't stand like most people you will see posing by good ol' Rocky.
I will say, I am a super connoisseur of pain. As you read these words you have to think more than just the pain - you have to think of the texture, the weight and the motions of it. You have to remember this pain does not go away. It is all happening at once.
I would sometimes tell women it's like having the worst cramps you ever had ALL over you body and not just in your uterus. The actually cramps - not all the other period junk. Just the cramps - all over. If you have ever throw up and been crippled by menstruation cramps. . .yep, it's like that. But all over your body.
I would tell men it was like the worst flu you ever had in your life. But all your symptoms are concentrated on your skin and in your bones and muscles. That flu ache - make it 100-times worse, all over, saturate it with intensity and live that way for 15 years.
First - Painkillers
I was never on painkillers for a few reasons. . .
I was taking a lot of medications. Maybe 20 at a time, and throwing in something to make me comfortable was not worth the risk of other interactions or side effects. "Quality of life" was often not the biggest concern. Treatment and surviving is not about pain, it is about living. It doesn't matter how much you hurt, it only matters you are still alive.
I would have needed more and more and stronger and stronger stuff and I didn't want to become depended on something. Nor did my family.Remember, too, I had tick-borne illnesses. Or rather - I had "things that don't exist." You cannot give someone with "things that don't exist" painkillers.
If I had cancer or a mangled bone, I could. For tick-borne illnesses, you get nothing.
In fact, many mainstream doctors suggest not getting treatment because it is more painful than the disease. That you don't have. Strong painkillers draw attention to the Lyme Literate Doctor (LLD) and that might cause the doctor to be unable to practice - so, you just gotta deal.
Also, I was out of it, mentally. I was so use to being in pain all the time, I was apathetic. Lymies have the "stare" - your brain just shuts off and everything gets harder to access in your brain from emotions to thoughts to comprehension of surrounds and the universe.
If I hadn't been working (Oh yes, I went to work everyday) and didn't have people forcing me to engage in life, I would have been staring at a wall for 23 hours a day. I would have forgotten what I was doing in that 24 hour.
Pain was just part of life. It gets easier in some ways, you just don't talk about it because. . .why? Why bother? It doesn't make it better and it takes so much energy to explain. Sometimes pain would be bad in one place in your body then it would move in quality or size - that was the best thing ever. When one part of you got a break. You were always in pain, just. .different qualities and textures.
The Don't Touch Me
I use to think people were really rough with me. I also thought I was just a pansy. People hug and rub on each other all the time and enjoy it. I was such a weakling, I couldn't handle simple touch.
The effects of 10 years of, "It's all in your head" and "it's all your fault" never go away even after you get a diagnosis and are in treatment.
My Dad would often come by me and my brother and give us a little shoulder grab and rub. It was a nice thing, like a quick hug because human like physical touch. I would cringe and just get through it. But, I know it was affection. Hugs hurt so bad.
I was and am not affectionate because it just HURT. And it hurt for days or week after contact. I did finally tell my Dad it hurt - and he used the softest touch but it still hurt. I still wanted contact with people but they could tell how I was repulsed. To this day, people believe me to be highly not-affectionate - because in four years I have not been able to completely undo the thought process of, "hang on, this is going to hurt!"
This extends to scratching myself, as well. Every have an itch? You probably just scratch it. I had an itch and I had to weight the pros and cons - itch it and possibly trigger a week long bout of pain throughout my body or let it go. The catch is, sometimes the itch would turn into burning and a week long bout of pain.
I learned I had to endure this quietly because people don't believe you or tell you to suck it up. It's not their fault - they have no idea what it's like.
That's why I am blogging.
Clothes & Skin
Clothes hurt. My bra was made of knife blades that were cutting into my bones. Once the blades were in the bone of my rib or spine, they would just cut away at my skin and gnaw deeper into the marrow with every movement. The eye hooks in the back of my bra - I felt those like little knives.
Clothes hurt. Jean pockets were extra pain and bulk. Elastic on socks was always too tight. My toes were numb from too-tight shoes. The tops of my feet hurt from too thin shoes. I didn't have enough padding on my shoes, so my bones rattled in pain with every step.
Naked - sure! Nope.
I would tell my Mom, "The weight of my skin hurts." That was the best way to start. My own body hurt my own body. My skin were epic gym mats wrapped around my body, crushing everything under it.
A simple flick of my wrist or touch would set forth a month long struggle of pain that moved up and down the point of contact to every cell.
My doctor once touched me and I said "ow" and he showed me how hard he had touched me. It was no more than a puppy-paw weight. It was nothing. It felt like a full on punch.
This was my daily amount of pain.
When I was a child, I use to wake up stiff and in pain. I hated it but I told myself I must be a superhero at night - I must somehow leave my bed and run around the world fighting evil and then when I come back, I have no memory. That's why it always felt like I was tired and my body felt full of bruises.
I was 9 and it was 1989 when I doodled about that. When my teachers told me how I needed to focus more. Apply more. Be smarter. I just wasn't. . .getting it.
The Crowbar
One summer, once I was quite better, I went fishing with my Dad and Uncle. My Uncle was moving a cinder-block, and it ended up falling and cutting down the front of his leg. I remember by Dad's reaction, turning away and cringing. And I looked at my Uncle, writhing at having this cement block having sliced down his shin. . .and I was like, "Does that hurt?"
That was not a good reaction. I feel bad about that reaction. I feel bad that I felt like my Uncle and Dad needed to suck it up and help get stuff together and not dick around. Sorry, guys.
I would have pain on the front of my lower legs. It felt like someone had taken a crowbar and with as much force as possible, hit my legs over and over. It felt like the bones were splintering and breaking. Someone once said it sounded like shin-splints but since I never ran or did anything. .well. .nothing else would have caused that amount of pain.
I was ok with this pain because it was centralized on the bone. It was a blunt pain. It was an appendage, my legs. It was easy to deal with. I could cope best with this type of pain because it didn't diffuse or melt into other parts of my body. That pain was there or not.
The Butter Knife
I would get pain in my back - once said to be bursitis.
It felt like someone had taken a butter knife and was trying to lift my scapula from the rest of my body.Like when you try to force open an oyster or clam.
You jam that knife in between and rattle it around and yank it and then use as much leverage as possible to get it up. But, my bones won't give so I just have this knife in my back. And it's UNDER the bone so I can't get any relief because the bone is blocking any heat or cold.
This was bad. The butter knife moves around a lot back there, in both shoulders. I told myself when it was happening, I just had to get through maybe three days of it. Then something else would hurt a lot more and that would be relief.
The Beam Drop
Your hip is a ball-and-socket joint, did you know that? I felt the ball grind into the socket. The bone felt rough, like someone pounded nails through my hip bone so the ball part of my leg were being ground into these nails.
The top of my hip felt as if someone had taken a bar of metal and dropped it on the top.BAM!
Right on the top of my hip bone. It would seep the rest of my pelvis. Before I was diagnosed, I use to think I was one of those rare women would could feel themselves ovulating because of the pain.
It really sucked. I would often have it worse in one hip than the other hip. So it was a welcomed break when it adjusted.
Thanks, WiseGeek.com for this photo and article on What is Beam Deflection.
The Shot Gun Blast
I had this single point of very sharp pain in the front of my chest in my shoulder. As if someone touched you with the point of their finger. Right? So, very sharp pain there and then the entire back of me would feel as if it had been blown out. It was as if a bullet had entered through my shoulder and took out my entire shoulder, ribs and back. It was raw, hot and screaming.
This was also really bad, and a bad day was Shot Gun Blast with Butter Knife. You'd think they couldn't go together. .and yet.
The Acid Cotton or Plasma Ball
Under my skin and IN my bones I would feel pain.
 |
| *shutter* |
I first thought of it as if you took some fluffy cotton but the cotton was acid. I sometimes called this the "fuzzy pain." It was quite burny and sharp - as if this fluffy cotton was floating inside my bones and when the little flecks of fuzz touched the inside of my bones, it would burn and spark and hurt.
When I got a little more brain back and re-learned what a plasma ball was - that was what it was. Where those little tendrils hit - PAIN.
This was the most annoying pain. It hurt that the cotton was floating there - but I never knew when it would burn against the inside of my bone and I never knew for how long. It would move up and down my bones, under my skin.
To this day, when I see those plasma balls, I cringe. Ick. thanks Apogeekits.com for the picture.
Fluid Pain
For my knees, I got a lot of pain in the sides of my knees and the back. It felt as if they were filled with acid - like a bag of low-level acid.
It didn't burn, it just slowly hurt and it took up so much room my knee felt unstable because everything was pushing on the tendons.
I did have fluid build up in my knees. You could feel the pocket of it behind my knee and that physically hurt. I did have enough inflammation to cause fluid build up - so, there was physically something there. Not much could be done about that.
Neuropathy
I still have neuropathy from all the illness and treatment. My nerves and brain are damaged and part of the manifestation is pain.
I originally had the numbness. I would amuse and/or wonder what was wrong when I would shove push-pins into the back of my shoulder and feel nothing. I actually had someone else do it to me once. I felt nothing. Whole patches of my skin and underlining body were numb (minus the pains above).
The first time I had the burning, it was winter. Thinking I was actually burning, I ran outside and lay in the snow. I was freezing and shaking and numb and through all of that, I was on fire. My skin felt as if it was covered in burning oil.
My muscles then went weak and the brain fog came on and. . .you just keep going on with your life.
It always starts the same, like a bad sunburn. Imagine the worst sunburn you had just cresting across your face. Then it just gets worse and worse.
Or if you burn yourself - which I have done on the oven plenty of time - when you get the mark. Hot, then maybe nothing for a minute, then it starts slow and smooth and then just keeps spreading over your skin and melts into your muscles like a wildfire of pain.
Or when you jump in a hot shower and it is WAY to hot and you scream and leap away - it's the moment you scream that I lived in.
 |
| Currently on fire |
I still get it a couple weeks a month. Sometimes if you see me, I'm just sitting there with acid flowing over my skin. Nothing I can really do about it. What I do try to do is move because it can lead to my muscles tightening and that's just double problems.
I will say hot tubs - they are fantastic! I back when I first got into a couple when I was sicker, I got maybe 20 minutes of pain-freeness from a very hot soak. But, it's a wonderful 20 minutes. Heat therapy for chronic pain is a thing that should be embraced!
I think the crappiest thing about neuropathy, I am not actually hot. As I learned the first time, I can use this like a super power to deal with something very cold.
After about an hour of intense burning, I get the fatigue. It's exhausting feeling this pain - I'm sure my body is trying to fix it. You just have to endure it. And pretend everything is ok.
Lyme is the great imitator, and it makes great imitators out of us all. At least, today, I do not deal with this everyday. Normally only a few weeks a month at most. And I can have whole months off. Right now, writing this. . .it's on like donkey kong across my face and across my back.
As with all things with Lyme - you need to have a split mind. You need to have to save part of your mind to live a normal life, to make plausible excuses for why you can't do things to the outside world and pulling it together to be in that world. Then you have the other part of your brain doing everything it can to cope with the illness and treatment.
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