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Too much pain...

Jul 28, 2016 1:19 PM

I've had RSD for 10+ years but last year new bodywide pains started (soles of my feet, ankles, neck, wrists...) diagnosed as Fibromyalgia. Then this winter I've had residual pain from a spinal block (terrible hip and back pain that is beyond everything else!)
This all overwhelms all my coping strategies:( I just came back from a trip to the in-laws and I spent 60-70% of my waking hours angry. Angry that I hurt, that I couldn't follow the schedule I needed. Angry they don't understand or respect my coping strategies. I know my mother in law has cancer and is pain. I don't belittle her pain but she does mine. I am so upset that I was angry and bitchy so often. That is not who I am, or who I want to be!!! I hated seeing the looks as I snapped again about something that happened. The jokes about being a control freak, needing to look "fancy"... dressing nicely with a little makeup helps me hold onto the facade of being a person, not a pile of pain. Timing is everything where my meds are concerned... I know I need to do what I needed, and I did as much as I could.
My husband did help. He spent time with the family so I could rest or nap, helping me build daily rest times into our schedule. But then we didn't visit as much and everyone, including me was sad about that. ...
We also canceled our 2nd vacation, a camping trip. A lot of factors when into that but for me, it was the overwhelming thought "I can't do one more thing." Each day seems harder... I'm usually not like this. I have a positive outlook! I've been going on the camping trip for Years!!! I see friends there I never see otherwise. How can I actually want to NOT go? Who is this person? She's not me. And I don't like her. ...I don't know how to change it though. I have no energy to change.
I've asked for more meds but been told NO. Even though I've had 2 new issues, I'm told it's a probably just a craving for meds. A craving?? A craving not to hurt!! Not for meds!! Fibro on top of RSD, that should be cause to increase meds. Now spinal pains from a botched spinal block (they inserted terms the needle 5xs!! Before they got it right!!) I'm so disheartened I've looked up ketamine infusions and hyperbaric oxygen treatments...but I can't afford them... but I can't live as this angry bitter person either... I need to find something that helps me find my center again, my positivity, and my joy. I know life will always be hard for me. But if I can see/feel they joy in things, I can have hope. I can have fun, relax, and have good times amongst the pain.
...so pretty much a whiney rant, but thanks for being a place I can do that and for listening.

Jul 28, 2016 2:21 PM

you rant away, right there with you. I have only been writing this pain diary for a month & realised that not one day has passed that I felt even remotely well, getting sick of it now been like this for nearly 3 years. The only thing that helped change my relationship to the pain is a mindful & meditation course, but lately even that is p***ing me off. Gotta laugh or you'd bloody well cry...all day.xx

Jul 29, 2016 1:27 PM

Gardener, don't apologize for letting it out. This is a safe place to do so. Many of us have been where you are now. Trust me when I say it is just like grieving the death of a loved one, grieving the loss of our old healthy lifestyles. It takes time to get through it, some longer than others. And trying to do so with uncontrollable pain makes it that much harder. But eventually as time passes you will get to that place in the road where you really understand your limitations, abilities, and find new joy. You will be at the point of accepting them, and you'll also be able to see how to make changes to enjoy life again, maybe not the same things or in the same way, maybe new things in modified ways. You may even find a way to enjoy camping, by exploring suggestions and alternatives. But right now you need to acknowledge your pain, just as you wrote. It is part of the road to finding the new you. Hugs love & prayers for you! We're here anytime you need to let it out. 🙂💕🙏🌸

Jul 29, 2016 1:59 PM

This is the place to talk about this kind of stuff... we all wine here.
Don't let anybody ever tell you what you can handle or how much pain you're in. She's has her story, you have yours and one has nothing to do with the other.
Chronic illness changes you. All of the sudden, you can't do thingsb you always loved. That consent make you a boring person.. it makes you a person struggling with a very real problem.
Its hard to be happy when everything is your life seems to conspire against you... but you can find it. Its in the little things, it's in the special people in your life.. its in knowing that things will getv better... its in knowing how strong and talented you really are.. its in connecting to people who really get you... on here is a great place.
I hope that things get better. It sounds really tough. Were all here for you. Hugs!!!

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