National Pain Week 2018

It is national pain week in Australia! 
Awareness week for those who do not live with chronic pain, and who does not know the daily struggles accompanied with it. And for those, like me, who are unlucky enough to live 24/7, 365 days in a year, with a pain.
The week when it is time to really tell the world how we, living with pain, are feeling. Showing the truth with ups and downs, so that instead of assuming, people would take a second to even try to understand, that everything is not like they see it. 
The fact, that chronic pain is more than often invisible, makes it even harder to explain to others. Easier to walk to the bus with crutches and get the seat. Rather than walking to the bus without anything and hoping that someone would see the struggle. 
Note! I am not saying, that visible illnesses always get the “attention” because I know, that is not reality.

I understand, that it might be hard to understand how in one moment I am perfectly fine, and the next moment I am literally searching for my painkillers. Which I always take with me – looking like some kind of drug lord when having pain meds in the plastic bag. Especially when going for longer travel, the struggle is real, when I am actually afraid that my luggage will be torn open to see why I have so many medications. Just for my own use. The real fear of getting through airport security check with all those meds, like “yeah these all are only for me. Yes, I might need all of these during my 6h flight.” --> 6h, because I think it is average time to travel from Finland to anywhere.

It might be hard to understand, that some days I can do training – I would go crazy if I would not be able. And the next moment in good days, I will just take the ice pack and use it, or use the ice pack and pain meds. In the worst days, I either lay on the bed almost all day, or I am in the ER. So why I still do training? Because I have to get used to living with my pain, and it does not mean, that if I would stop training, I would not have pain. Sometimes my pain gets worse just from walking. Or just from sitting down too long. Fun, right?

It is sad fact, that only in Australia 1 person out of 3 has chronic pain, and still there are so many of us who feel alone with the pain. Just for comparison, in the US over 100 million suffer from chronic pain. We are actually a huge community, but still sometimes feeling alone. 

Negativity & pain

"You are just faking your pain to avoid this.""What a pathetic way to seek attention.""Must feel good to be able to get strong medication when just telling about the pain."

Negativity makes everything worse, even chronic pain.
Does not matter if it is about own negativity, or coming from outside.
We, with chronic pain, do not need more negativity in our life.
I think I am not the only one who has experienced unbelievable and just ignorant comments, which might ruin the day. Maybe that person does not even realize the effect of the words, maybe they say it as some kind of sick joke, but that is the reason we have to talk about it. Tell what is not okay to say for someone with chronic pain. 



I am not faking my pain.
There have been moments in my past when I was crying after training because someone told me, that I am faking my pain to be able to avoid some workouts. 
During those moments, I would have done anything to just be able to do more. And sometimes I did, overextended myself because I did not want to hear those things anymore.

I am not seeking attention.
If the attention comes with being honest about everything and writing about everything to my blog. Then what can I do? If you are tired of reading or hearing these, then just stop reading and stop listening. 
My idea is not to seek attention but to spread awareness.

I would choose medication free life any day.
First of all, I am lucky enough to be able to survive without daily pain medications. Maybe I should use them daily, maybe it would be better when thinking about pain management. But I do not need it daily. Mostly because I do not like pain medications. I try to survive as long as I can without those. I want to know at which moment I have done too much because usually, the medication will block pain.
But I have two different pain medication if needed.
So no, it does not feel good to be able to get strong medications. Because usually, I am not the one who wants the meds, I am the one who is trying to find what is wrong and be able to continue my life. :)

'We know everything' -people

"Have you tried to do more yoga?""You should do more training.""You should not do that much training.""You should maybe quit your sports.""You should try this *name of the medication/vitamin/magnesium/whatever.""Chiropractor/bonesetter/something similar would definitely heal you.""Just change your eating habits, and your pain will be gone.""My mom's friend's aunt is a doctor, you should try this."

Just thanks, but no thanks.
Yes, probably I have tried that one already.
Yes, I also tried yoga.
I know my body. And yes, I do overextend myself once in a while, but I still know my body.
I changed my eating habits, but I still have pain. Should I just stop eating?

Invisible is also real

Not all illnesses are visible. And more than often, chronic pain is invisible. You might not see the suffering, and that is the reason it is sometimes hard to understand. I get it. But even though making assumptions is easy, it would be super important to just remember trying to understand. Take a minute or two to get out from the assumptions, and rather ask than just think. 

The fact that pain is easy to hide.
It is easy to get used to the pain - and it is not nice. No one should get used to the pain because no one should experience pain. It is wrong. But it is a reality for so many.
It is easy to hide the pain with a smile. And somehow just a smile can mean to so many, that nothing is wrong. That you are totally okay. 

Because of the invisibility, many of us, with chronic pain, are silent sufferers.
At least I am.
I hate to talk about my feelings, my pain. I have pain, and I know, that in some moments when it gets worse, I should tell about it. 
But somehow I do not tell. I suffer in silence.

In conclusion

If someone you know has chronic pain, and you are ready to be there for them. During good and bad days. Let them know. Because all we need is someone who is there for us. Even if you would not always understand, just being there, knowing that there is always someone to rely on, is important. 

And if you are also having chronic pain, and you are feeling alone, I am here for you.
I am here for anyone who wants to talk, who feel like there is no one who understands.
I know how that feels like, and that is why I want to be there for you.

"The pain might define how I feel, but I am not letting it define who I am."

 

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