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Hi Terri, I haven’t spent much time on this forum, but I was checking my emails and it popped up. I’m on my cell and don’t have my glasses on, so I apologize in advance if there are typo’s, etc… Yes, being alone too much messes with my mind! I NEED human interaction! My motto is “NEvEr Give Up!” (YoI do have to pick my battles carefully, though.) A physically healthy person will have the same issues without personal connections. This is part of the reason a pet or support animal is also important.
I saw that no one had replied yet and wanted to encourage you in your quest of seeking “out of the box” friendships and let you you know are not alone!! I’ve been where you are and the online pain communities saved my sanity!! I have several diagnosis that cause chronic pain. Renaud’s, Interstitial Cystitis with Hunners ulcers, widespread inflammation and muscle spasms, inflammatory bowel with spasms, arthritis, debilitating headaches, there’s more, but you get the idea. I’ve been sick my whole life and housebound and bed bound for long lengths of time.
I have never stopped searching for relief, both emotionally and physically. I’ve even gone as far as studying natural medicine myself in the hope that if I can eliminate just a fraction of my pain. I play the percentages game. If I find 8-10 different things that bring me any fraction of relief at all, well, that’s something!! I’m quite behind in my studies, because of my disabilities, but the school has graciously worked with me and I can take the time I need.
I needed to find something to try to focus on. It’s better than doing nothing while I’m housebound several days, weeks, months at a time! I sometimes get a few days of semi-reprieve each week in the summer, but I have to force myself to keep moving. I’m never out of pain, ever. It’s comforting to know that someone is out there online. For me, messaging, even my small cell screen, is better than looking at the same old walls every second of every day! Each year it gets harder, but I’m not giving up.
I have also found that if I can do some kind of right brain activity, it helps distract me so I’m not watching the clock wishing the day was over. Painting projects and sewing have become projects that are too big for me now. If I keep it small, such as the adult coloring or gluing something together, going online, facebook, forums, Pinterest, etc..it becomes a little reprieve. I also try to get 15-20 minutes of fresh air 3 times a day. Sometimes more, sometimes I can’t get any and it’s a chore to go from the bedroom to the bathroom. I don’t mentally beat myself up as much as I did. People in the forums are very encouraging and if you meet someone whom you really get on well with, there’s always video chatting if that would seem more personal. Some days it’s all I can do to manage what I orally take for my illnesses and everything else gets put on hold.
The pain community is a great way to connect with people who understand! I’m a problem solver and constantly seeking solutions. My illnesses have consumed me most of my life. I feel the forums have helped me keep my illnesses in perspective at times. I have a disability. It’s up to me as to whether the disability has me or not. I am not my disability. I do have to make allowances for what I physically and mentally can not do. It is a constant struggle, but I don’t have to do it alone and neither do you! I have found a lot of support over the years in the online pain community!
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Hi Terri,
We do understand the impact that chronic pain has on our mental health. Chronic pain isn’t just the pain — it is also how the pain impacts our whole lives and how it limits us from interacting with family & friends and the world in general.
We found this to be such a huge problem and concern for people living with pain that we started offering support calls every Tuesday. We hope the calls will help to fill a void in a persons life who lives with pain.
So many of us find ourselves confined to our homes only leaving to go to health care appointments or to purchase groceries. The support calls allow people to interact with others who understand the journey of pain. The calls are about having a connection to others — to be able to hear other people’s voices and the emotions in those voices.We wanted people to have a safe and non-judgmental place to get and give support from the comfort of their own homes. The calls are open discussions so everyone on the calls can be a part of the conversation. We also want people to feel comfortable so if at first they would prefer to call in and just listen to the calls that is absolutely okay with us.
We strive to make the calls feel like old friends getting together to talk. There is never a time that anyone has to worry about feeling pressured to share or to share more than they are comfortable sharing.
The hostess on the calls also lives with pain and enjoys talking to others and making new friends. She will also do one on one calls with anyone who would like to talk about the calls before joining one of them. All you have to do if you would like a one on one call is to email, outreach@paincommunity.org and let her know that you would like a one on one call.
Here is the link so you can read more about the calls and see the schedule for the calls. Our next call will be on Tuesday, May 22nd at 7:00pm ET, 6:00pm CT, 5:00pm MT and 4:00pm PT.
Take care,
TPC YaYa
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Chronic pain can be very isolating and I think the above outreach program is wonderful.
I went looking for a community page on Facebook as my mobility is limited and I posted on there a bit about myself and said if anyone can relate then message me and maybe we can get together for a cuppa. Obviously I was mindful of what info I gave out but A lovely young lady my age messaged me and we had a lot in common and I have visited hers and vice versa. It’s good as they understand if you need to go after a short visit. This new friendship has really helped with my loneliness and depression. Hope that suggestion is something you can try 🙂 -
Hi Kristy,
Thank you for sharing this with us, we are so pleased to read this. We are committed to doing all we can to help people with pain find ways to interact with others because we are also live with pain and we understand how isolating the pain can be.
Take care,
TPC Yaya
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi Terri,
Welcome to The Pain Community.
It is so very isolating to live with pain that limits our ability to get out and interact socially. I find that the unpredictability of when I will be feeling up for an outing makes it a challenge to plan things.Like Kristy, I have found people in my community with the same condition I have that are eager to meet at a coffee shop or in a park for some in person support. The chat rooms here are a great respite for when I’m stuck at home and feeling a bit lonely.
FredFriend
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Hi Terri,
I can definitely relate. I work from home and spend most days by myself – unless you count my kitty. If I don’t have any phone conferences, I can go for days without talking to anyone.
The internet is a great lifeline and TPC provides a safe place that we can all “talk” to each other. The telephone support is great as are the forums and the moderated chats on Monday, Wednesday and Friday at 11am ET. I host the Friday chats and would love the opportunity to get to you know.
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Hi, I really like this pain support community. It helps ease the isolation. I have never had pain this bad for this long (going on 5 months) and except for my dog and relatives dropping by I have been isolated. Doctor’s appointments have been hard to get to. Most people even with pain think going to a movie or out for coffee is no big deal but when the pain is intolerable it’s too much. I plan on joining in on one of the conference calls. I think it will be helpful.
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Hi Terri,
We are so pleased that you are finding The Pain Community (TPC) to be helpful. If you are available we actually have one of the support calls tomorrow, Tuesday, June 5th at 1pm ET.
I do understand how the pain isolates because I also live with pain. At times it can feel like I am the only person left on the planet. That is where social media and the internet has been so very helpful for me. I have met so many wonderful, caring and compassionate people and made life long friends.
We look forward to you joining the support calls and continuing to share here on The Pain Community (TPC) forums.
Take care,
TPC Yaya
TPC Community Moderator“The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”
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Hi, terri. I can relate to those feelings of isolation! I don’t “look” like I have pain so people don’t get it. When I have a flare-up, others don’t understand an pull away. The Internet has been a great way to connect with others. I’m grateful for TPC. I haven’t been on for awhile, but it makes me feel good to know you’re all out there.
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