What does chronic pain mean to me?
Explaining what chronic pain means to me is not an easy task. It is not easy to share things like this, not even with other chronic pain sufferers, and even harder with those who do not have chronic pain.
If you are one of those lucky ones without chronic pain or chronic illness, please stay with me, I am trying to open up here (and people who know me knows, that I do not open up easily).
And as said before, it is not an easy thing to do, so if something does not make sense - do not even bother Googling it, because you will not find my feelings from there - read it again, think more deeply, and if it still does not make sense, just skip it. Or send me a message, throw me a comment or whatever. You can even try to send me smoke signals - might take a couple of times to find the right wind direction, etc, but never give up, right? ;)
I was a healthy baby.
And I was a healthy kid until I started track and field.
I am not kidding, that sport has given me more sports injuries that you could even imagine.
Just wait a minute, hmm, I think I have already had all body parts injured at least once.
My head is still fine - as fine as it can be while battling with chronic pain.
--> I mean, I have never been totally normal, but who actually is normal? Or what normal actually is? OK, I am not going into that now.
Two years ago, February 2017, I injured my back.
I am not going too deeply into this one, I have already written about this before.
It was basic training when I felt this sharp pain on my back. I did not pay much more attention to that until the day later when I almost lost my balance because of leg weakness.
That was the time I become worried. Maybe it was not just a small nothing to worry about pain?
Now, 2 years later, I can definitely say, that it was nothing like my previous injuries.
There is actually an international diagnosis code for chronic pain (you can Google this), but none of the doctors in Finland have had the courage to make that my diagnosis. Does it mean, that there is still hope to get rid of this? I do not know. I have no fucking idea.
I did not hope for this.
I did not want this.
I did not ask this.
I did not think this would happen.
I did not even think this would be possible to happen.
I was just a normal 20-year-old athlete, who injured her back during one training. There was nothing weird, nothing that would have been an indicator, that it would never go away.
In fact, I think I never actually thought that there is such a thing as chronic pain.
I mean, think about it. How can someone just get chronic pain?
One day you just have pain, that does not go away.
Really, take a minute or two to really think about it.
Isn't it crazy? Weird? Scary?
Well, first of all, it hurts. And it is exhausting to be in pain 24/7.
You know those stupid lego bricks?
Imagine just standing on one of those 24/7 without having the possibility to move away.
I could say that is how chronic pain feels like.
You just do not get rid of it.
I cannot just decide "OK pain, that is enough. Let's move on."
That is just not how it works. It could be fun though, being able to move the pain away.
It is there. All the time.
I have good times, bad times, worst times and something in between all of those.
Worst times are, well, worst times. Usually, worst times are either almost leading me to hospital, or making me go there.
It is not nice, but sometimes I just cannot survive alone at home anymore.
In fact, I absolutely hate hospitals. I have bad experiences, also good ones, but the bad ones are stuck in my head.
Look, it is totally different to have acute pain.
If you break your leg middle of nowhere, call an ambulance, get to the hospital to get some relief. You will get it, they will look after you, try to ease your pain and fix it.
But everything is different with chronic pain.
Usually, you will be taken as a drug seeker, you just want to get something stronger to get high.
Or they will not help you, because simply, they have no fucking idea of how they could help. They have not been trained for chronic pain patients when there is no cure. No way to fix it.
You see what I mean?
Can you already get what is the problem?
In addition to having pain all the time, people with chronic pain are also treated in the wrong way.
And why? Because making assumptions is so easy.
People wonder why I am not going to the ER if I really am in so much pain as I am telling.
The simplest reason is, that there is not much they could do.
And because they might not believe me.
They see me as someone who walks in and looks perfectly fine.
While I am not.
But they cannot see it.
But no, I have not tried therapy.
I have thought about it though.
And my honest opinion is, that everyone with chronic pain should be offered some free consultation times with a therapist. Because whatever the pain level is, how bad or serious the situation is, it changes your life.
A new life starts at the moment someone is "diagnosed" with chronic pain. And the first few months are critical, because no one can usually see anything good in the situation at that moment.
People have different coping mechanisms, that starts the moment you have been told there is nothing to do for the pain. Some will just become numb, do nothing, just lay on the bed (I also had that period). Some will do all they can to fix it (had that as well), but some people will not ever again become anything. They stay in their despair - this is just harsh truth.
The moment I was at my worst, after the hospitalization in November 2017, I moved my thoughts to something else. Escaped the reality, and traveled a lot. With my student loan by the way - like in the picture below in New York.
Seriously said, I would have needed therapy a year ago.
I am not saying, that I would not need it now. Maybe I do.
But I suck at talking with people, so I am not sure how therapy would work in my case.
Just sitting there quietly, or randomly bursting into tears without being able to explain why.
That is how my therapy sessions would look and sound like.
Did you know that a lot of chronic pain patients have depression?
And many people with chronic pain have done suicide because they have not found any other way out?
I give you permission to Google this stuff, as it is true. If my link does not convince you, be my guest and search more from everyone's friend Google. :)
This is, and will probably always be, one of the hardest topics.
Something I do not much talk about or write about, and something I rather do not talk further after someone reads my blog and will definitely ask me something about it... Please just don't do it, asking I mean, or self-harm.
I would lie if I would say, that I have never had thoughts like that.
I have had.
The pain is really debilitating and shattering. During my worst times, everything has sometimes felt really pointless.
Like there would be nothing to live for - the time I had to stop hammer throw AND Taekwon-Do - because I have not been able to do what I love to do.
I have felt super alone and lonely like there would not be anyone to talk to, or no one to understand.
It is not easy. And sometimes, hurting yourself might just seem like a quick fix. A temporary relief.
It is not anything like that.
It is not a quick fix or a relief.
It will only make it all worse.
You (and I) are worth of everything in life.
And chronic pain should not cost anyone's life. Or make anyone hurt themselves.
But this is just one more reason added to the list of reasons why people with chronic pain should be able to see a therapist.
Get a referral immediately from the doctor who tells that there is nothing to do, and says "sorry bud, you now have chronic pain."
My pain is mostly on the left side of my back, nowadays, unfortunately, also on the right side once in a while.
The pain I have is also nowadays mostly referred pain down to my leg. And that is, in fact, one of the major reasons why doctors are now more concerned. It is not only a back anymore, but it is also a leg, which means, that there is a nerve issue involved.
Nice right?
Let's add here one more time, that my back had really small percentage possibility, that it would get worse. At least that is what I was ALWAYS told by doctors in Finland.
But it went worse.
The same what happened with my shoulder years ago.
I do not know, maybe this is just about my damn bad luck.
I will give you here an article about the problem with normal pain scale in chronic pain patients: https://themighty.com/2019/04/standard-pain-scale-problem-chronic-pain/
That one is not used by medical professionals, though, I am saying, that it should be. Instead of using the normal pain scale, that would be a good addition.
I might actually print it out, and take with me when I see a doctor next time. It could maybe help the doctor understand everything a little better.
In chronic pain scale, which is pictured above, my pain is usually between 9-11. This is a huge change because there was already a time when it was in 6-7. A bit depressing, I know.
That pain level is with medications like Lyrica, Tramal, and Movitas, so I think you already know what I am going to say; I do not even want to know, what my pain level would be like without those medications.
They are truly lifesavers at the moment. Something I could not live without.
That is just another depressing truth about my current life.
And in fact, I actually know exactly what happens if I stop taking those. I tried it, did an experiment with my body and health. I cannot recommend it, and I will not do it again. It was like hell.
During the nighttime, my pain usually increases to 12-13, or very near 14+.
The night before last night was one of the worst ones, one of those nights I was thinking to just go to ER. And I am not taking the option of going to ER lightly. I am only thinking about it if the situation really is bad.
The thing is, that before now, I have always been able to fall asleep, even with pain. It has become harder, and the pain wakes me up EVERY single night (except some weird unicorn nights when I sleep like baby whole night). Sometimes I am able to sleep only 2h.
-- The good thing about the nights I am not able to sleep, or the nights I randomly wake up at 4am and cannot fall asleep again... At least I see a sunrise those mornings!
Just imagine the exhaustion, that 24/7 pain gives you, and then not being able to sleep at night.
It is not something to take lightly.
And not being able to eat almost anything, because the pain gives nausea and loss of appetite.
But the thing is, that it is NOT just a pain.
It affects everything in my life, makes everything a little harder.
In fact, if it would be JUST pain, I would probably be ok with it (until some levels). As I already was.
But I just cannot handle the constant dizziness, nausea, and everything else that comes with pain that high.
If you are one of those lucky ones without chronic pain or chronic illness, please stay with me, I am trying to open up here (and people who know me knows, that I do not open up easily).
And as said before, it is not an easy thing to do, so if something does not make sense - do not even bother Googling it, because you will not find my feelings from there - read it again, think more deeply, and if it still does not make sense, just skip it. Or send me a message, throw me a comment or whatever. You can even try to send me smoke signals - might take a couple of times to find the right wind direction, etc, but never give up, right? ;)
#throwback
I did not born with chronic pain. I think that is not even possible.I was a healthy baby.
And I was a healthy kid until I started track and field.
I am not kidding, that sport has given me more sports injuries that you could even imagine.
Just wait a minute, hmm, I think I have already had all body parts injured at least once.
My head is still fine - as fine as it can be while battling with chronic pain.
--> I mean, I have never been totally normal, but who actually is normal? Or what normal actually is? OK, I am not going into that now.
Two years ago, February 2017, I injured my back.
I am not going too deeply into this one, I have already written about this before.
It was basic training when I felt this sharp pain on my back. I did not pay much more attention to that until the day later when I almost lost my balance because of leg weakness.
That was the time I become worried. Maybe it was not just a small nothing to worry about pain?
Now, 2 years later, I can definitely say, that it was nothing like my previous injuries.
It never went away.
Here I am. With chronic pain.There is actually an international diagnosis code for chronic pain (you can Google this), but none of the doctors in Finland have had the courage to make that my diagnosis. Does it mean, that there is still hope to get rid of this? I do not know. I have no fucking idea.
I did not hope for this.
I did not want this.
I did not ask this.
I did not think this would happen.
I did not even think this would be possible to happen.
I was just a normal 20-year-old athlete, who injured her back during one training. There was nothing weird, nothing that would have been an indicator, that it would never go away.
In fact, I think I never actually thought that there is such a thing as chronic pain.
I mean, think about it. How can someone just get chronic pain?
One day you just have pain, that does not go away.
Really, take a minute or two to really think about it.
Isn't it crazy? Weird? Scary?
How does pain make me feel?
This is hard. I am really giving a hard time for myself here answering my own questions. Though the truth is, that I have been asked all these questions by other people as well.Well, first of all, it hurts. And it is exhausting to be in pain 24/7.
You know those stupid lego bricks?
Imagine just standing on one of those 24/7 without having the possibility to move away.
I could say that is how chronic pain feels like.
You just do not get rid of it.
I cannot just decide "OK pain, that is enough. Let's move on."
That is just not how it works. It could be fun though, being able to move the pain away.
It is there. All the time.
I have good times, bad times, worst times and something in between all of those.
Worst times are, well, worst times. Usually, worst times are either almost leading me to hospital, or making me go there.
It is not nice, but sometimes I just cannot survive alone at home anymore.
In fact, I absolutely hate hospitals. I have bad experiences, also good ones, but the bad ones are stuck in my head.
Look, it is totally different to have acute pain.
If you break your leg middle of nowhere, call an ambulance, get to the hospital to get some relief. You will get it, they will look after you, try to ease your pain and fix it.
But everything is different with chronic pain.
Usually, you will be taken as a drug seeker, you just want to get something stronger to get high.
Or they will not help you, because simply, they have no fucking idea of how they could help. They have not been trained for chronic pain patients when there is no cure. No way to fix it.
You see what I mean?
Can you already get what is the problem?
In addition to having pain all the time, people with chronic pain are also treated in the wrong way.
And why? Because making assumptions is so easy.
People wonder why I am not going to the ER if I really am in so much pain as I am telling.
The simplest reason is, that there is not much they could do.
And because they might not believe me.
They see me as someone who walks in and looks perfectly fine.
While I am not.
But they cannot see it.
Have I ever seen a therapist?
I have seen a sports psychologist and mental coach.But no, I have not tried therapy.
I have thought about it though.
And my honest opinion is, that everyone with chronic pain should be offered some free consultation times with a therapist. Because whatever the pain level is, how bad or serious the situation is, it changes your life.
A new life starts at the moment someone is "diagnosed" with chronic pain. And the first few months are critical, because no one can usually see anything good in the situation at that moment.
People have different coping mechanisms, that starts the moment you have been told there is nothing to do for the pain. Some will just become numb, do nothing, just lay on the bed (I also had that period). Some will do all they can to fix it (had that as well), but some people will not ever again become anything. They stay in their despair - this is just harsh truth.
The moment I was at my worst, after the hospitalization in November 2017, I moved my thoughts to something else. Escaped the reality, and traveled a lot. With my student loan by the way - like in the picture below in New York.
Seriously said, I would have needed therapy a year ago.
I am not saying, that I would not need it now. Maybe I do.
But I suck at talking with people, so I am not sure how therapy would work in my case.
Just sitting there quietly, or randomly bursting into tears without being able to explain why.
That is how my therapy sessions would look and sound like.
Did you know that a lot of chronic pain patients have depression?
And many people with chronic pain have done suicide because they have not found any other way out?
I give you permission to Google this stuff, as it is true. If my link does not convince you, be my guest and search more from everyone's friend Google. :)
Have I ever had thoughts of self-harm?
Ok, now we are in some very deep shit.This is, and will probably always be, one of the hardest topics.
Something I do not much talk about or write about, and something I rather do not talk further after someone reads my blog and will definitely ask me something about it... Please just don't do it, asking I mean, or self-harm.
I would lie if I would say, that I have never had thoughts like that.
I have had.
The pain is really debilitating and shattering. During my worst times, everything has sometimes felt really pointless.
Like there would be nothing to live for - the time I had to stop hammer throw AND Taekwon-Do - because I have not been able to do what I love to do.
I have felt super alone and lonely like there would not be anyone to talk to, or no one to understand.
It is not easy. And sometimes, hurting yourself might just seem like a quick fix. A temporary relief.
It is not anything like that.
It is not a quick fix or a relief.
It will only make it all worse.
You (and I) are worth of everything in life.
And chronic pain should not cost anyone's life. Or make anyone hurt themselves.
But this is just one more reason added to the list of reasons why people with chronic pain should be able to see a therapist.
Get a referral immediately from the doctor who tells that there is nothing to do, and says "sorry bud, you now have chronic pain."
So how the pain itself feels like?
Another thing I am bad explaining.My pain is mostly on the left side of my back, nowadays, unfortunately, also on the right side once in a while.
The pain I have is also nowadays mostly referred pain down to my leg. And that is, in fact, one of the major reasons why doctors are now more concerned. It is not only a back anymore, but it is also a leg, which means, that there is a nerve issue involved.
Nice right?
Let's add here one more time, that my back had really small percentage possibility, that it would get worse. At least that is what I was ALWAYS told by doctors in Finland.
But it went worse.
The same what happened with my shoulder years ago.
I do not know, maybe this is just about my damn bad luck.
My pain levels are very high on a daily basis.
Something I thought I would not have to experience ever again.I will give you here an article about the problem with normal pain scale in chronic pain patients: https://themighty.com/2019/04/standard-pain-scale-problem-chronic-pain/
That one is not used by medical professionals, though, I am saying, that it should be. Instead of using the normal pain scale, that would be a good addition.
I might actually print it out, and take with me when I see a doctor next time. It could maybe help the doctor understand everything a little better.
In chronic pain scale, which is pictured above, my pain is usually between 9-11. This is a huge change because there was already a time when it was in 6-7. A bit depressing, I know.
That pain level is with medications like Lyrica, Tramal, and Movitas, so I think you already know what I am going to say; I do not even want to know, what my pain level would be like without those medications.
They are truly lifesavers at the moment. Something I could not live without.
That is just another depressing truth about my current life.
And in fact, I actually know exactly what happens if I stop taking those. I tried it, did an experiment with my body and health. I cannot recommend it, and I will not do it again. It was like hell.
During the nighttime, my pain usually increases to 12-13, or very near 14+.
The night before last night was one of the worst ones, one of those nights I was thinking to just go to ER. And I am not taking the option of going to ER lightly. I am only thinking about it if the situation really is bad.
The thing is, that before now, I have always been able to fall asleep, even with pain. It has become harder, and the pain wakes me up EVERY single night (except some weird unicorn nights when I sleep like baby whole night). Sometimes I am able to sleep only 2h.
-- The good thing about the nights I am not able to sleep, or the nights I randomly wake up at 4am and cannot fall asleep again... At least I see a sunrise those mornings!
Just imagine the exhaustion, that 24/7 pain gives you, and then not being able to sleep at night.
It is not something to take lightly.
And not being able to eat almost anything, because the pain gives nausea and loss of appetite.
"But it is just pain, it cannot be that bad."
If I hear one more time someone saying me, that sentence, I might strangle someone. (OK, that was a very bad joke.)But the thing is, that it is NOT just a pain.
It affects everything in my life, makes everything a little harder.
In fact, if it would be JUST pain, I would probably be ok with it (until some levels). As I already was.
But I just cannot handle the constant dizziness, nausea, and everything else that comes with pain that high.
There has to be a way.
What do I mean with this sentence?
I mean, that there has to be a way to ease my pain.
There has to be something that I have not yet tried, something that maybe no one has told me before, or something that has always been there, but doctors have not been ready to do it for me.
In the end, I do not care what it is, as long as my daily pain level would be reduced, I will take it.
But what I do not want, is to just live the rest of my life with medications. And that is the reason why I have had to seriously consider having surgery. I have not yet talked with my doctor in Finland, but I will talk, and I will ask about that option. If it can make my pain less, or even make it go away, I am ready to try it.
Because how could I know, if I will not try?
Here, in the end, I want to add, that I am not jumping into the surgery just like that. I have considered this for a long time already. I have thought about this alone, and I have got some very good insights from people around me, people who I trust.
I still want to see surgery as a very last option.
But if I look at everything that I have already tried, and how my back issue has developed over these 2 years, I really cannot see any other non-surgical option anymore.
Thanks for all those who have made me see more clearly, think more clearly and who has supported me during all the struggles I have recently had.
I cannot ever thank you enough for being there for me, and I hope, that wherever I go, whatever happens, I will still have your support. It means a lot. You know who you are. ;)
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