Oh love that is so heavy to bear and Yes I do know the burden of it. The gaslighting yourself is the worst as I feel it is learned behavior of being constantly dismissed. This is where the second guessing also makes us feel like we are in a parallel universe looking at a false likeness of ourselves. Like we could not possibly be going through and dealing with what we are. No one would be able to be active or smile or have any resemblance of a life if we were in the pain that we claimed. Fuck the haters - Fuck the lies and their disbelief. I am learning that just because someone says it can’t be done does not mean it can’t be done.
Thank you TF - Yes, I am learning to be stronger - learning to speak up for myself and hold space for me. I am slowly learning to do what I can to heal and be resilient.
so true - you have put that beautifully. This is a reminder that I need with me as sometimes it is hard to understand and accept. I sometimes feel like my inner voice is harsher on some and need to realize that we may be dealing with different symptoms but experiencing the same severity. “Horses for courses” I had to look that up. Thanks for the new to me idiom. Very fittin
I do not have a network or any community. Only recently did I start to get some direction as to my symptoms and the diagnosis. I have come across some people dealing with chronic issues on Instagram who I have been listening to and gaining strength from. Listening to them helps me feel seen and not crazy. I know now hat I am not alone. Many trivial things that happen daily or are said to me and are dismissed by me are in fact what others deal with as well and are not ok. I am at a loss for examples at the current moment but for sure I am hoping to search for an irl group to connect with but at the moment I have 0 energy for anything other than work and PT (and sometimes not even that). It is just lovely to know that the community exists and there is help out there. Grateful you have found a supportive community for yourself. We really need that deeper connection of peers who can understand the plight
Much love Karen Thank you for your kind words and loving support. Grateful that a friend pushed me to start this thread and glad that I finally felt strong enough to share and be vulnerable here
I may take you up on that absolutely wonderful offer. Thank you so much friend. You are a gem and I appreciate your support and love. Appreciate your humor!
Oh love that is so kind and I do appreciate the sweet sentiment Thank you so much!
Hi @JazzyS - I just read your post. Thank you for sharing and continue to do all of the good things for your health. I’m so impressed with how you are managing your pain. Swimming is such a big thing. Driving to the pool, getting on your swimsuit, showering afterwards…I’m just so impressed. The diet and body healing. You are an inspiration to this community!
Thank you so much Michael
Very kind of you to read through and show your support. Appreciate you friend. Glad you are here with us on this sober journey
Wow
And holy shit Jazzy.
I was hurting just reading it all.
That’s a shit ton of chronic pain you got going on. And on top of that, I don’t remember you mentioning how well you aren’t sleeping. How could you be?
I really don’t have the words either. I am glad you put this all out here. I hope it helps. Even if it just the world wide love from this community. Knowing we all care deeply for you. I cannot imaging how hard living like this is for you or anyone. Parts of it sounds like my sister when she was living with her MS.
You helped me a lot sharing your experience strength and hope on here on the daily. And it has taught me a few things about listening to people when they are in pain whether it be chronic or not. My wife and daughter. Sometimes people just want to be listened to and believed. I’m finding that can go a long way.
My dad was in chronic pain my whole life from his back injury and like you. Pain became his friend. And that was the title of his book he self published Pain My Friend. I wish I knew then what I know now. But it doesn’t work that way.
Anyway…. Happy you put that all out here. And I’m loving a lot of responses. Even biting people for ya
Now I must search for a meme
You wouldn’t have it any other way, right?
Dead end my arse (ass) they clearly don’t know who they’re dealing with!! Absolutely nothing is set in stone and looking outside the box instead of taking what they say and rolling over shows the the inner strength and courage that you own my lovely. I would think this would also be a positive impact on your mindset too, if that makes sense, plus being interactive with people in similar situations, knowing you aren’t alone in what you’re going through too. Much love to you and I appreciate your kind words too hun
This made me laugh…thank you so much for your kind words. Some days I do feel strong and others not so much. Definitely pissed but making amends with that anger as doctors are human and can only work with what knowledge they possess. Still very frustrating.
Much love Franzi. Thank you for your support. Thank you for the validation that it is not an easy load to carry. I sometimes isolate one symptom and tell myself that so many people deal with this all the time. I need to be better at handling it.
Very rarely do I put all my symptoms and feelings in the block at once to acknowledge the full weight.
I am very grateful that I am still moving forward and making the progress that I have …hope keeps me going
Thank you so much Eric. You are such a dear friend and I do appreciate you listening to me rambling in about my day. Appreciate the ear and the shoulder. I am sorry you have had and have so many in your life dealing with Chronic pain/ illnesses. It really is something that is not talked about much
If you get sick or injured then everyone is around and helping you feel better. Our minds are programmed to think that a few weeks or possibly months and all will be good. We can’t fathom someone dealing with ongoing shit for years or decades.
It’s also so bizarre for people to see someone swimming or walking or working if they have these symptoms. Being that I’ll or in so much pain you couldn’t possibly be doing what you are.
I think it was last year when I was able to do my walking and I was so thrilled that I was able to do 5-8 miles . It was painful but I did it (even if its all I did that day ). A friend said well you must not be all that bad cause I can’t even do a 30 min walk. Why? Why do we need to compare? Why is their inability to do something a validation for them that I’m exaggerating? Then another friend tried to press my skin to see the marks that inflammation makes. If they don’t see it at every spot or right away the. Of course I’m lying about that too. Yeah ..I have stopped seeing there “friends”.
Sleep . Yeah I wish I could get some sleep. I did last night after many months and I know that was due to yesterday’s activities and me exasperating my symptoms. I know my body is capable of sleeping and hopefully as I heal I will get it back to a healthy pattern. I will not give up on my set sleep time…so I will be prepared for when it does bless me with sleep
I am working on bringing light to my symptoms to my family. I realized earlier this year that even they did not get the full scope which baffled me as they see me / talk to me daily and know all the ailments. So it’s a learning process for me to be more open about it and accept support.
Appreciate you and your friendship. Thank you so much
Of course…memes are great fun and I do find that the chronic memes really hit the nail on the head. They do make me feel see. With some humor attached
This made me chuckle. It has been a learning experience for me for sure. I did roll over mentally for a hot second. Especially when my body started to cave and I could no longer walk. Luckily swimming saved me.
Seriously been so eye opening to me. We do expect the doctors to have all the answers or have direction. It took me a while to realize that this is not the case. After many doctors (some private doctors too), specialists, acupuncturists, holistic, ayurvedic, Chinese medicine…etc I have decided that I will work on cleaning my body from the cellular level and then hopefully it will heal my ailments. For the first time I’m in control of the experimentation and I am not doing it with steroids or meds or surgery. This gives me hope. I found a guy who claims to have healed himself with the methods I am trying and am trying to figure out if he is legit and get in contact…more hope.
Hey Jasmine. Oh my goodness. Thank you for sharing this with us. I can’t begin to imagine what you’re living with. That’s an exhausting amount for one person to carry, especially while having your pain dismissed along the way.
And yet you’re here - staying positive, holding onto hope, searching for healthy ways to care for yourself AND still offering so much support to everyone around you. You really are an incredible inspiration. I hope this place gives you somewhere to be completely honest about the difficult days too, without ever feeling that you’re complaining. You deserve to be heard. There’s so many people on here that can relate on some level or offer fantastic words of wisdom and encouragement. I’m not as eloquent ! But I’ll be here reading and supporting you X
Thank you so much love! I am grateful for this space and all of you. Really am grateful I took the step to open up here. I am feeling the support and connections here and do feel seen / heard. I am sorry that so many are quietly suffering with chronic conditions and hope that this space will help them as much as it is already helping me.
You are a lovely support and I do appreciate your words and support. Much love to you
so true - you have put that beautifully. This is a reminder that I need with me as sometimes it is hard to understand and accept. I sometimes feel like my inner voice is harsher on some and need to realize that we may be dealing with different symptoms but experiencing the same severity. “Horses for courses” 
I had to look that up. Thanks for the new to me idiom. Very fittin
Grateful that a friend pushed me to start this thread and glad that I finally felt strong enough to share and be vulnerable here 
I may take you up on that absolutely wonderful offer. Thank you so much friend. You are a gem and I appreciate your support and love. Appreciate your humor!
