I have had to pull out of family and friend events due to pain, fatigue and other symptoms. I'm not sure people always understand or even believe my illness, but you have to look out for your health. I've learnt that the hard way from trying to ignore my symptoms and keeping going with the aid of adrenaline until I reached a point where I had used up all my energy reserves. Now I have to use my 'spoons very carefully'.
Oh my. I feel that way too...when I'm in severe pain and go to work/class I feel isolated and silent. I do have a lovely partner, but sometimes it feels like no one here understands! I am surrounded by healthy busy people and even when I'm at my best it's like no one here knows of the struggle to get out of bed...and my partner gets upset when I sleep so much...or lay on the couch for hours. They get agitated and hang out with friends. But there are times they cuddle with me...they get upset if I'm in too much pain to cuddle. Blahhh
I also have felt very alone, lonely, sad and isolated throughout the last few years since I had to stop working. Not from my family thankfully....that would be devastating. Because we have invisible diseases/illnesses, we are at a huge disadvantage in society. Unless someone has gone thru something similar or have been with someone really close to them with chronic diseases and pain, no one can understand. Those who aren't real good people may disbelief all the problems we have because there are no bandages, crutches, disfigurement etc. ; it's a sad statement to our society for sure. But what I have learned is who really is a friend, who really is a caring and good person. Who really cares about you. And it is those people that we should surround ourselves with not the others. And one doesn't need dozens of good friends, 1,2,3 as many as there are. Keep those close to you and let them know what you are going thru and tell them when you push them away it's not cause you don't want them, it's cause you don't feel good. Family can be very wonderful to partially fill this role also. But by being in this community, I don't feel so alone any more. Keep sharing!
I sometimes feel my isolation issues are brought on myself. Due to the fact I always used to deal with my problems on my own. So I don't reach out to some people like I should. Then there is also the fact of those I thought were close friends that will no longer talk to me cause they believe it is all in my head. I get tired of trying to explain myself, when really I shouldn't worry about it cause it's my business and not theirs.
I am completely isolated even though I am 45 all my family has passed. I have my husband and my 2 children. We moved to be closer to my daughter and I have not been able to make friends because where can I go? I had a couple of friends before we moved but 5 hours away seems to be distancing those. We live in a large complex and there are those I have short conversations with but that is it. This is the only place where others understand so being able to talk and share here is a blessing. This is like a cronic pain support group because when in pain who could really go to a group meeting.
Arianna123, I'm so sorry you're dealing with this. The world becomes overwhelming sometimes... My pain (especially when I'm in a flare-up, like now), makes me want to isolate. I accept every invite I'm given however, I usually end up not going and disappointing everyone in the process. I usually do the same thing at my own home. When we have a BBQ, family/friend gathering, or whatever, I will go outside, see everyone and hang out about 2-3 hours (usually less), and go back inside and back up to my room. I hate it and try hard to push through, sometimes I can't do it. I am still trying to work on understanding that when I can't do something, I have to listen to my body and do the best I can. We are all in this together. Good luck to everyone... Hoping you v
Hey Arianna, I'm completely isolated, I'm bedridden with the exception of going to school for a few hours and doctors appointments, all of which require a wheelchair and crutches so i can walk and move. I haven't gone to family weddings, birthdays. My uncle Pete died a short while ago from am aggressive form of cancer, I wanted to go to his funeral but because he loves in Australia and we have no money, I couldn't. Even now I'm not able to be at school and I'm in bed because of pain. Is a tiring battle 😢
Hey Reece, I'm sorry for the situation you're in... I'm in the middle of a flare-up and I'm in bed with a giant, Snuggly quilt and just trying to find a position that my body and my brain can agree on. I know what you mean about isolation because I miss friend's and family's parties. (Weddings, BBQ, even parties at my own home). I can't work so I get it about you not being able to go to school. You're so young to have to deal with this kind of pain.... I guess there's a reason we suffer, but suffer we do. Hang in there, we're here for you. I'll be praying for you. (And everyone that this day brings some peace and less pain).
It is so hard to find the strength to do what we absolutely have to let alone anything extra. When you have to try to explain your pain to friend they cannot grasp the situation. Most people have had acute pain but not chronic pain they just have no idea that getting out of bed to brush your teeth might be all you have to give that day. Then after dealing with the pain for so long you end up isolated and depressed. Why would we want to go out and shop or something knowing that we will end up in bed curled up in a ball crying. The video 'you don't look sick- the spoon theory' has helped me to explain my chronic pain to my very few but closest friends and family. If you have not looked at it I urge you to. We all here in the community understand and are happy to support and share however we can.
LMB, you're so right. There are days that getting up, brushing my teeth and coming back upstairs is all I can manage. I have to look at that video... I've been hearing about The Spoon Theory and it really would make a good tool to help explain our pain. Not that we owe anyone an explanation, nor do we have to justify our pain. This community has been a Godsend. I'm so glad I found everyone. It helps to be able to talk and not be so lonely.
It is truly hard when family (new son inlaw) says I only see you at your house. Are you just too good to come to our house. I just sat in my car and cried. Then I saw the spoon theory and shared it immediately. I explained that I do my very best and that is all I can do. I like others in our community really have no family. I have one child and only 2-3 friends. Pretty isolated. Love our little community that we all have created.
I send gentle hugs and warm healing thoughts to you all! Reece, I'm so sorry you are living the life you live especially at such a young age. My heart hurts for you. You obviously are a very strong and smart, and caring young lady as evident by your posts. I hope you have the best day possible for you! 🌻
I'm glad we're all together. I think of us as a big, blended, newfound family. We have somewhere to not be lonely, to say how we feel and KNOW we'll be understood. It's sad to be so isolated like this and LMB, I get it, I cry a lot from guilt, Depression, pain, loneliness and from time to time, I even have a pity party.. LOL!! Ya gotta laugh, right?!?! I am in awe of the younger folks that are stricken with this horrible thing called pain. They are so very mature, compassionate and wonderful people. We, as a whole, are so entitled to have a place like this community. Everyone, no matter what their life, wants to belong and fit in and be understood. I pray for you ALL and hope your pain levels are manageable.
Arianna123, I wish you weren't going through such a tough time with chronic pain at such a young age, nor Reece or any of you other younger one's. I've lived over half my life and at 54 I feel much older.
I remember being your age without a care in the world. But as I began to age and gather new health problems & chronic pain, beginning at 32, I could remember my grandmother being sick (& alone) but never complaining. She'd just say, "I'm not feeling well today." She stayed home a lot and avoided most social events, or only putting in an appearance.
Now its my turn, only I have way more medical issues than she even knew existed. And yes, I feel isolated and lonely a lot. My husband and I use to take trips to hike or walk beaches for hours. I can barely make it through the grocery store. I've traded a hiking stick for a cane. My husband goes metal detecting or bottle digging with buddies on the weekends now. What makes it hardest is not being able to continue the hobbies I once had, taking up hours of my days, like sewing or cross-stitching. And losing our pet to cancer last year. I've developed even more allergies, including dogs, cats, rabbits, & ducks, so a pet could be risky now.
Friends, long distance, have stopped inviting us up because I can't handle the car ride. And it's amazing how when you stop working (or school in young people), the people you called friends soon forget you.
I use to sit and watch TV most of the day. Until I found CMP and this wonderful group of understanding people just like me. Everyone has similar, yet different lives, problems, pain tolerance levels and advice. And to date, no one is judged on here, even Christians & non-Christians are respectful of each other. I am a Christian so many have received messages that I'm praying for them. What works for some doesn't work for others. And yes, even with CMP, we'll have days of loneliness and isolation. But I am never alone because God's always with me.
I hope you find ways to manage your pain and on your good days take time to do something enjoyable, even if its just to sit in a park or eating somewhere with your friends or family. And on days you aren't your best, accept it and don't beat yourself up. Stay positive, even when its hard to imagine a good day coming. Negativity will make your pain worse. I don't know a lot about computers, and with the way my brain is functioning I'm not sure I could learn. But you younger ones should use Skype and things like that to keep your friendships going. And remember if you're invited to participate but can't, say cheerfully "I'll take a raincheck on that!" Bless you & praying for you!