[Willowwisp]

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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