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What a Day With Complex Regional Pain Syndrome Feels Like…

This is what a day in my life used be like for 6 years! But after countless physical therapy sessions, doctors appointments, therapy sessions with and without my mom, and learning to accept that this is my new life, my new normal.. I’ve finally reached the point in my life that I can actually be more myself.. more of the person I used to be before I was diagnosed.

This by no means is me saying that I’m 100% fixed.. I still struggle with what is known as “Brain Fog”, I still have trouble saying words that used to come so easily for me before. I still get tired quicker than I used to do and I stay sick longer, my immune system is definitely weaker.. it doesn’t take much for me to get sick or even injured.

But after everything that I have been through I’m finally enjoying what I missed in my early 20s. I didn’t even get to enjoy my 20s, I was diagnosed at 23 and I’m now 29 and in January I’ll be 30! So I have so much catching up to do!

I’ve just started working.. it’s had its ups and downs but that’s life. Just getting to work has been a major goal of mine and now that it’s been accomplished I finally feel like an adult. I’ve accomplished so many big steps in my journey and in my long recovery.. I’m hoping to continue that stride with getting my own place and start dating. I can’t wait to see what my 30s has in store for me!

What my life used to be like

Can a person imagine something they have never seen or experienced? Does imagination have limitations? No?

No, matter how hard I try to explain the sound of the crashing waves, the feeling of the sand in my toes, and the beautiful horizon, to someone who has never seen a beach, they will never understand what it is like to be at a beach until they experience it themselves.

When I first got diagnosed with Complex Regional Pain Syndrome (CRPS), I thought the biggest struggle would be dealing with the pain. Almost 6 years later, I realized that I was very wrong. One of the hardest things to deal with is the fact that no one can see or understand what I’m going through. It is hard to understand what it means to have non-stop pain unless you live with it. On my better days, it’s even hard for me to remember what my worse days feel like, so how can anyone else understand what I’m going through if I can’t unless I am experiencing it at the moment? If I look like a completely normal goofy teenager what else can I expect from people to see? There is no good answer, there is nothing we can do to change the fact that millions of people have invisible diseases, but I will try my best to raise an awareness and understanding of chronic pain.

When I wake up in the morning there is a split second when I don’t feel pain. When I forget about my pain. And then I open my eyes and it hits me. The pain, the realization that I will have to go through another day with this pain, and knowing that I will have to smile and fake that I am fine to my peers, because the only thing that can come out of my trying to communicate the pain is me being labeled as a complainer.

Despite the fact that I am exhausted because the pain makes it almost impossible to sleep, trying to be a normal person all day with constant pain is an extremely draining task. Imagine going through the day is like walking in a circle normally, but for you to get through the day, you have to walk that circle in a swimming pool. Every step you take takes a lot more effort because you are pushing though the water which is much denser than air. It will be almost impossible to keep up with everyone out of the pool and you will quickly become fatigued. Additionally, the pain will mess with your brain function and make it almost impossible to concentrate on anything. Even with putting aside the effects that lack of sleep have on cognition, imagine trying to concentrate on anything while in terrible, constant pain. It is practically impossible.

Now imagine something you just can’t shake. Maybe it’s something positive; you have a friend who you love but is a bit clingy and you need space. No matter what you do or where you go they are there. At a certain point, you are just tired and done and want them to go away. You just desperately need a break, some time to yourself. But no matter what you do you can’t get that. Chronic pain is that constant thing. Forget about the fact that pain is obviously painful, but imagine just being so overwhelmed and in desperately need of a break from something but no matter what, being unable to get rid of it. You would probably be mad, frustrated, upset, and hopeless.

My point in writing this was not to make you feel bad for people with chronic pain, but when you in constant pain, it is nice to feel that people understand. While I know I will never make anyone really get it unless they’ve experienced it, I hope this can spread some awareness and understanding of what it feels like to live with chronic pain.

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