#crpshope

[crpslife]

[bankonmindset]

CRPS Types I & II

A lot of this medical journey has been a guessing game at best. Doctors find it comforting somehow to tell you they aren’t too sure what they can do for you, but don’t worry they’re keeping up with the latest treatments. Yet, while they wait, your life passes you by.

Living with this condition has tested me in ways I didn’t believe were possible. I used to think I had a high threshold for pain, but now pain is a friend to me. When most people experience pain, it’s alarming to them, making them need to get fixed or put back together so the pain fades. If CRPS teaches you one thing, it’s how strong the human body and mind really are.

Every waking moment, of every single minute, of every single hour, of every single day pain residents inside my entire left leg. I haven’t been charging rent so this motherf*ckers here for to stay. Ones body becomes trapped, things you used to love doing you now can’t. Things you want to experience and do, you have to think of every single angle of how your CRPS could affect that; when all is said and done, it just isn’t worth it.

Everyone always asks, well what does it feel like? Well, let me do my best to share my take on this condition. Imagine for a moment that a limb of yours was taken over by someone else, you don’t control it anymore it controls you. Instead of being proactive you are constantly reacting to how your affected limb is that hour, not day, hour. Imagine making plans with all your friends and the hour you need to be getting ready, you spend keeled over in tears trying not to pass out the pain is so intense. Imagine for a minute your body was being cremated while you were still inside it.. starting with my entire left leg, I am in an inferno. Gravity is a bit of a cunt when you have CRPS in your lower extremities because the swelling just trickles down into your foot. Now imagine a water balloon, being hooked up to a hose line and turned in full blast. There is a moment, right before the balloon bursts under pressed and it is stretched to its maximum capacity; that is how this feels in my toes. The skin is at maximum capacity, my nerves are screaming that it’s time to get our life jacket and head for safety. Instead, it feels like the skin on my toes and foot are ripping apart like some pull apart bread you’d eat on super bowl Sunday.

I do not claim to have this thing figured out because the cognitive lags & other symptoms it causes I refuse to acknowledge. It’s just too daunting. It’s too daunting to wake up every single day and wonder how bad it is going to be today, never how good it could be because that never happens. You paint on a smile for those around you so they don’t notice, you learn how to be a comedian & chameleon fading into the background. You learn a lot about yourself in a journey as trying as this.

Maybe one day, maybe not, maybe some day there will be something out there for us for those who carry the burden of CRPS. Until then, we wait.. trying not to let our lives pass us by...

[crps-chronicpain-ptsd]

No one really understands how much effort it takes to function unless you are actually living with 24/7 chronic pain. AND I’m not talking about normal function it’s just barely enough to get thru in spite of the pain. I’m out I’m walking it’s slower than normal but I look fine. But I’m not fine if you look closely into my eyes I’m sure you can see my pain if you look at my limbs they’re sweaty swollen blotchy my speech is all over the shop and I’m dying on the inside ,just dealing with the pain takes so much out of you. It’s exhausting both physically and mentally When you have so much pain, you are truly forced to pick and choose only a few things you can do that day…sometimes its just get out of bed and move to the couch ,learning to pick and choose what is worth our time, energy and more pain is bloody awful… ☹️ you want to do all of the things on your list but your body just can’t after a few days your mind can’t either it just shuts down with extreme fatigue /pain everything becomes so hard ☹️ this is why learning to work on pacing and balance the day is so important to learn I need constant help there ,my goal is to try and build some kind of flexibile routine I’m so overwhelmed when try to do it on my own being bipolar and wanting everything yesterday i need to stop pushing myself so hard and being so hard on myself and listen to my body more and actually let people help and accept it doesn’t have to be perfect My body has developed its own defensive mechanism to fight my superpower / hero episodes—now my body just throws itself and says NOPE I can’t anymore I collapse ,pass out sometimes it’s days of chronic fatigue no matter how much sleep i get I don’t feel refreshed I’m alive but dead and if it triggers a flare then it’s a double whammy,it doesn’t matter what we do the price of more pain is defiantly inevitable sometimes it comes with days in bed and extra break thru meds ,its days of chronic brain fog and chronic exhaustion is an understatement to describe the feeling , it’s so bad you struggle to get to the bathroom let alone a shower there’s always a trade off ! Well that’s been my week hope everyone else is well with lower pain days it’s pushing it’s well after 2am and my unwanted friend #painsomnia is visiting ☹️✌️🙏 😴

Chronic pain problems •

[crps-chronicpain-ptsd]

Chronic pain problems •

[rsdhope]

Everything I said above is completely true. It is not an exaggeration or any manipulation of words. Those were their words, verbatim. I learned I can't let anyone not even doctors dictate what I can and can't do. This was a very hard time and I left out a few things from the words above...... I'm sure you can piece together what depression for that long will do to your mental psyche. Today, and for the last 7 years I have had a doctor who cared not just about what's on paper or what treatments didn't work...  He Cares about the quality of life I'm living. How I'm managing both my mental and physical health and is encouraging not discouraging. All I can say is thank God for people like him because if they didn't exist I wouldn't be here today. Thank God for people like all of you as well because when things turn really dark there's no one there. Doesn't matter how much money you have at that point, what cars you own, or any of the material bullshit that you have in your life.... Everyone will slowly fade away because they're tired of hearing you saying the same thing over and over again. This is a very personal post to me because it's a very personal experience that I only told several people and I'm sharing it with all of you today, not to make you sad or feel bad for me but to uplift you. To show you that even if everything fails you can still hold on and push through. **Wishing everyone a managed pain Day ❤️❤️** #rsd #crps #rsdkills #crpshope.net #crpsstrong #reflexsympateticdystrophy #crpssuffering #crpswarrior #chronicpain #chronicexhaustion #fatigue #hypersensitivity #anxiety #ptsd #ptss #onehand #livingwithonehand #rsdhope #frustrated #burningpain #sharppain #rsdsawareness #crpsawareness #crpssucks #livingwithonehand #hope #suvivor #strength #fighter #fuckpity #fuckrsd https://www.instagram.com/p/CTcb5hIs2x2/?utm_medium=tumblr

[rsdhope]

I wrote this almost a, year ago but choose to keep it in "my diary", today I'm sharing it with all of you. I don't know about you but I never thought I would end up disabled... I was just living life like everyone else. At the time things were going great, I had a good job and on the day of the accident I was supposed to go into the office to complete the promotion documents - in a snap/flash of light everything changed completely.  So.... Please be kind. #rsd #crps #rsdkills #crpshope.net #crpsstrong #reflexsympateticdystrophy #crpssuffering #crpswarrior #chronicpain #chronicexhaustion #fatigue #hypersensitivity #anxiety #ptsd #ptss #onehand #livingwithonehand #rsdhope #frustrated #burningpain #sharppain #rsdsawareness #crpsawareness #crpssucks #livingwithonehand #hope #suvivor #fighter #livingwithonehand https://www.instagram.com/p/CTZxtGWMUxV/?utm_medium=tumblr

[rsdhope]

After about 2 bad weeks of intermittent flares I'm finally trying to catch up with everything. Ya'll know how that goes... It's the never ending cycle. I am pacing myself and trying to do less rather than burn myself out completely then end up in the same cycle again. *Wishing everyone a managed pain day 🙏* #rsd #crps #rsdkills #crpshope.net #crpsstrong #reflexsympateticdystrophy #crpssuffering #crpswarrior #chronicpain #chronicexhaustion #fatigue #hypersensitivity #anxiety #ptsd #ptss #onehand #livingwithonehand #rsdhope #frustrated #burningpain #sharppain #rsdsawareness #crpsawareness #crpssucks #livingwithonehand #hope https://www.instagram.com/p/CTXfh0hrauW/?utm_medium=tumblr

[rsdhope]

If I could only count how many times this happened to me it's just ridiculous. Sometimes you can be at a managed level all day, as soon as you step out it all goes to hell 🥵🥵 #rsd #crps #rsdkills #crpshope.net #crpsstrong #reflexsympateticdystrophy #crpssuffering #crpswarrior #chronicpain #chronicexhaustion #fatigue #hypersensitivity #anxiety #ptsd #ptss #onehand #livingwithonehand #rsdhope #frustrated #burningpain #sharppain #rsdsawareness #crpsawareness #crpssucks https://www.instagram.com/p/CRm2gPnsHl4/?utm_medium=tumblr