Chronicpainwarrior

Join the Conversation on
1.6K people
0 stories
94 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    The realities of Dying

    I post a lot about the positives and those are very important, but I think it is also valuable for me to share some of the struggles as well, as that is a part of this journey. I have carefully cut out all supplements and 3 prescription medications, working towards a medication re-set. These pictures show how my body is breaking down; my skin tears and my vessels in my eyes burst, I just have to brush my skin against something for bruising/petechiae or cuts to occur and pain levels are very high. I have doubled my Tylenol arthritis. I am exhausted all the time. My heart and lungs are struggling and I have been going into shock if I try to do too much physically. That said, I am so grateful for all the people, pets and tools I have to make this easier. I am going to be in pain regardless of what I am doing, or where I am, and life is still overwhelmingly more good than bad, so I am enjoying all of the adventures that I am going on, big and small. They may not look the same as they would five years ago, or even five weeks ago, but they are amazing and life is still so good.

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #raynauds #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #dying #RareDisease
    #Chronicpainwarrior #FunctionalNeurologicalDisorder #grateful

    Post
    See full photo

    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

    .

    Post
    See full photo

    Almost died… again.

    Yesterday was a really mixed day, I had a great time chatting with and slowly working on stuff on the other side of the house (I just moved in to my new duplex, where I live on one side and my family the other) with my amazing partner and two friends. I am truly blessed to have such great people in my life. 💜

    I have been pushing very hard with both getting my new house ready and getting my old house ready to go on the market to sell it. After my friends left though, my body decided it was time to shut down and I had a pretty scary medical crisis; luckily, my partner is very good under pressure and we were able to handle it. I don’t know though what would have happened had I continued to push today as I have been. 18 hour work days for a healthy person is a lot, never mind in this body. It is hard to accept dying, but dying by wasting away is harder than I thought. My muscles are eating themselves and my bone mass is going as well; my ankle foot orthotics, knee braces and ring splints don’t fit anymore because I am literally wasting away. I just touch something and my skin bruises and tears. My parts don’t stay in place (Ehlers Danlos); my fingers/toes/ribs/knees/hips sublux daily. My bloating is so bad that my skin/tissue is tearing on the inside. My pain is chronic and getting more intense. My heart and lungs are struggling and declining in function. That is just a sampling of all that my body is serving up. My body is saying no thank you and that sucks. I am stubborn and still want to do all of the things that I used to be able to do, but I can’t, and when I try, the consequences are very real. Deadly real. I want to enjoy this beautiful new home I have for as long as I can get. Years, not days. So I have set out a plan to use timers to take breaks and have people holding me accountable.

    As always, life is more good than bad. Despite all of the challenges, I consider myself incredibly lucky. I have amazing people in my life, awesome dogs, I am surrounded by beautiful nature, good food, great books, and new adventures to be had.

    Thank you to all of you have chosen to follow me on this difficult journey, I know it’s not easy. I feel so blessed and loved. 💜

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsDisease #MentalHealth #Depression
    #Anxiety #ChronicPain
    #ChronicIllness #Disability #dying #RareDisease #rarediseaseawareness #Chronicpainwarrior #ConnectiveTissueDisorder
    #deathanddying

    Question
    See full photo

    Moving forward can mean leaving the past behind. We’ve come so far and yet we still have so much to learn. What is something helpful you’ve learned?

    Being gentle with ourselves can be really tough especially when we reflect back and judge ourselves. It is so easy to be mad at ourselves for not knowing things when we were younger. But it has to be that way. If we already knew everything, there would be no room for us to grow in this life. Please share something helpful or useful you have learned along the way. We can learn so much from each other!

    Thanks to you all. Thanks for how you have been working to support each other!

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below in this post and others. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment or new post a simple ❤️or reply I’m sure they would really appreciate your support.

    #MentalHealth #Depression #Anxiety #PTSD #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #Headache #HIVAIDS #longtermsurvivor #PeripheralNeuropathy #Neuropathy #BackPain #Addiction #AddictionRecovery #Fibromyalgia #Chronicpainwarrior #MentalHealthHero #Stigma #Grief #LossOfAParent #IfYouFeelHopeless #Hope #thankful #grateful #relief #Happiness #Acceptance #PainAcceptance #strength #CheckInWithMe #TheMighty #MightyTogether #MightyMinute #DistractMe

    Question
    See full photo

    Let life surprise you…what’s an obstacle you have that is holding you back from happiness?

    Ever gotten something you wanted, and it didn't give you the happiness you were expecting? Or you got something you didn't want, and you loved it? We assume we know what is good for us but life has a way of surprising us all the time. Does anyone have a story where this sort of unexpected result happened?

    #MentalHealth #Depression #Anxiety #PTSD #Disability #ChronicIllness #ChronicPain #Selfcare #Selflove #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #Headache #HIVAIDS #longtermsurvivor #Neuropathy #PeripheralNeuropathy #BackPain #EssentialTremors #Bronchitis #Pneumonia #CPTSD #Addiction #AddictionRecovery #Fibromyalgia #Cancer #Diabetes #Chronicpainwarrior #MentalHealthHero #Stigma #Grief #LossOfAParent #IfYouFeelHopeless #Hope #thankful #grateful #relief #Happiness #Acceptance #PainAcceptance #strength #CheckInWithMe #TheMighty #MightyTogether #MightyMinute

    Post

    Interest in a podcast specifically for people with chronic illness and/or disability?

    Hi all,

    I'm brand new here, trying this out for the first time. I'm working on putting together a podcast made by and for people living which chronic illness and/or disability. The goal is to share real stories of how people adapt to their new lives, challenges they've faced, what they've learned, how they cope, and also interviewing professionals who work with people with chronic pain. This is specifically for people who used to live "normal" lives, but had to completely change their lives due to medical issue or trauma. The focus is not on any specific condition, but about how we deal with them.

    Does this sound like something appealing to you? What topics would you like to see covered in this podcast? What would be most helpful for you? Also anyone good with computers interested in helping to create the podcast, please send me a message! #neisvoid #disabilitysupport #Spoonies #reimaginelife2 #Chronicpainwarrior

    Post
    See full photo

    It's a bad day for my body.

    I am having such a rough time today and yesterday. Headaches and pain so bad that I had to leave work yesterday early and called out today. It just gets to be so depressing and hopeless. I am mentally and physically exhausted. It would be so much easier to just throw in the towel. I try to be positive and keep my "everything is good" mask on my face. I just wanted to let out what I was feeling. Better to share than to hold it in. #ChronicPain #ChronicIllness #Chronicpainwarrior #Fibromyalgia #ChronicFatigue #SpinalStenosis #DegenerativeDiscDisease #painsucks
    #Migraine #iwanttogiveup

    Post
    See full photo

    1,000 members and growing strong…your leaders Moshe, Chris and Neeta thank you for your support and helping build this community!

    We love reading your posts, seeing your smiling faces and hearing your stories. Good or bad, what we share with each other is vital to making a difference as this community was designed to find others who are living with multiple health challenges like we all do. These combined together can make our lives unmanageable, and Moshe started the group to create a community so we can empathize and support each other. It started with a modest goal of finding 20-30 people who walk similar paths of the same or different physical and/or mental problems. But now we are excited to have had all of you join us and feel very blessed that so many of you have found us here!!! We’re honored to now be a part of a group that is growing rapidly, and having new people post and follow our posts.

    Over this time we have made over 100 posts ourselves with memes and images, sharing our stories: what we’ve been through, how we have struggled, what we have learned, and what has helped us along the way. Some of our posts have new writing pieces that are pretty deep and we try to be as open and honest as we can be. Other posts simply have a few sentences reflecting on the meme or the image. And we’ve offered a number of questions which have encouraged great discussions. We would be honored if you were to scroll down and find the posts, which all have an image or meme.

    Many current and new members have also shared their stories, struggles, frustration, worry, fear, and lessons learned & successes. We all try to acknowledge, relate, empathize and support each other. It takes courage to share with strangers but we are non-judging, accepting and supportive of each other. We would love to see more posts from all of you so we can get to know each other, and/or please respond to each other's posts with a ❤️or a comment. When you create a new post sharing your picture or adding an image at the top attracts more attention, and then hashtags at the end reach other groups with members who share similar challenges like you do!

    We look forward to learning more about you all. We commit to respond to as many posts as we can, always ❤️new ones and try to be there for you. And we will keep making new posts to share and also post questions for you all to engage in conversations.

    Sending blessings for great health & healing, peace & serenity and connection & support.

    Moshe @maxtempo
    Chris @chrislynn1
    Neeta @littleredrose

    (This collage of pictures shows only Moshe & Chris - Neeta is shy😉)

    **Before posting this one of us had all memes and images disappear, but the other said they are all there. If you too can’t see the images please comment or DM one of us as soon as you can! Thanx…**

    #MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Chronicpainwarrior #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #Grief #LossOfAParent #Suicide #ChronicFatigue #HIVAIDS #longtermsurvivor #BackPain #COVID19 #Migraine #Headache #PeripheralNeuropathy #PTSD #Selflove #Selfcare #Diabetes #Stroke #CheckInWithMe #TheMighty #MightyMinute #MightyTogether #IfYouFeelHopeless #Hope #strength #Fibromyalgia #relief #Acceptance #PainAcceptance #SocialAnxiety #Happiness #strength #relief #MentalHealthHero

    Post

    Just need to vent a little #ChronicPain

    Why am I like this?

    My #nervepain is flared up. It’s not horrible, but it’s distracting and at the point where it’s affecting me.

    But in a way I did it to myself. It had been getting worse anyway, but I pushed myself too hard at the gym and now it’s bad.

    The thing is, it wasn’t an accident. I knew I was pushing myself too hard. I knew the smart thing would be to stop and rest. But I forced myself to do it. In part because I was having a good time. I like seeing how strong I’m becoming. But part of it was that I don’t want to use my chronic pain/permanent injury as an excuse. I would feel like a quitter if I let myself stop. I would feel like I was taking the easy way out and like my arm was a limitation.

    I wish I could learn to accept myself and my limitations. I wish I could learn to see myself as just as worthy even if I let myself quit when it’s beneficial to me.

    I also wish I could take a sick day without feeling weak.

    #BrachialPlexusInjuries #Chronicpainwarrior #MentalHealth