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Wonder What It's Like... (*rant warning)

Jul 25, 2015 5:46 AM

Okay, overall I like older people because they're sometimes more open about meds and health. Just, as a teen lately I've felt frustrated when youth is described as a energetic and easier time. I've never been pain free. Can someone describe it to me? I think if I didn't have pain I'd be social. Instead, I'm socially awkward and so sleep deprived that my class mates think I'm high.
This came up today in another chronic pain group when someone was describing insomnia. They described being a teenager as having energy and vitality. That was their experience, I just don't understand. I don't think about things like sports or dating.
I'm too busy with doctor appointments, med experimentation, trying to stay in school, and trying to figure out whether to apply for disability or get a job that my peers are all more qualified for. Ugh. Why? I'm up right now, at 4am, just since I know I won't sleep anyway.
I've tried asking people without pain what it's like, but they just say "just normal."

If you're up for it, can you briefly describe a pain free life, if you've ever had one.

Jul 25, 2015 6:14 AM

Mornin love!
I understand you're frustration being lumped into a group just because of your age. When I was first diagnosed with RA at 27 I always got "but you're so young" and the ever fun "what are you, 92?". Yeah, that really made me feel better. It's unfortunate we live in a society that most people think PAIN=OLD. Even RA commercials piss me off because the people are always old so it just reinforces the stereotype.

I think people might have trouble answering your question. It's going to be similar to us describing our pain to someone without it. I sometimes relate my muscle pain to people as bein sore after exercise but full body and ten times worse. That gives th a frame of reference.
I can't imagine going through the past six years since diagnosis, as a teenager. Kids are self involved assholes. I guess take the best day you've ever had and times that by 10. For me not being in pain is relaxing. My muscles aren't contracted with pain, it's wonderful. But I always have some pain, it's never completely gone and never will be.

Wait your a chick right? Menstrual cramps! K, give me a sec to explain lol. You ever get really bad ones and then your Tylenol or Advil finally kicks in and so you're not super cramped up anymore and it feels great, right?! Make that full body! Naaailed it!! Well maybe not but I hope that helps you a bit.
I gotta go to work, but hang in there!!! Life sucks, but maybe we can get through it together.

Jul 25, 2015 6:43 AM

Well that's a real hard question to answer I've been in pain so long I can't even know if I can but will try its been like 35 years ago Pain free to me is like beeing a teenager and have the nice hot sun on your body lying on a lawn chair havering a ice cold beer in hand and not a care in the world I m sorry I can't think back that far sorry but hope we find a good answer soon have a kind of pain free day

Jul 26, 2015 12:47 AM

Dearest ferret I've had chronic pain and fatigue since the age of 14 and am now 36, but I do have good days and even had some good years in there too. Plus I remember some childhood memories of a body less restricted.
So what I remember from being little and free of pain, responsibilities, illness and constant frustration with my body. I LOVED doing physical things. I loved my bike, rollar skates, climbing trees, jumping off decks, tree houses, anything high up that would freak me out now I would jump off of or swing out of on a rope swing. I walked over the rainbow arched monkey bars like a bridge, both low and high set. Not using my hands, that was considered cheating. I fell off a lot of things. I was always covered in scrapes, bruises, cuts, burns, and blisters and they never really hurt. I broke my tailbone and that hurt, but not enough to tell my parents about. I broke my two front teeth, had to tell my parents about that one. It never slowed me down. I was fast. Especially in water. I was a great swimmer. My body felt light, flexible, and free.
At 14 I had mononucleosis for the first time and everything became heavy and slow. All my organs swelled. My joints too, and they ached. After I was never the same again. Migraines started the same year and I still didn't know how to swallow pills so I took liquid and powder meds. I missed a ton of High school and a lot of college too. Then I saw a great Dr. on campus in San Francisco and she set me up with a plan that made me feel great for nearly two years. No pain medication, no headaches. Just living life like an average 22 year old. It felt great. I had energy to work, go to school. I graduated, found a job, and applied to grad school.
I made it until 2008 before my body really started to give way under stress. Had my surgery to help clear out my endometriosis in 2008 and moved to a part time job in 2009 to try to reduce my migraines. Unfortunately they placed me in a high stress, high crime location with active drive by shootings etc... so it didn't really have the stress relieving effect wanted.
So now I'm mostly home, and I have good and bad days. But I can still feel the childlike freedom and lightness in my body on a really good day, especially if I do my breathing exercises, stretch, and eat healthy. I can feel that good energy deep down inside ready to be put to use. Sorry such a long post from me tonight. โ˜†โ™กโ˜†โ™ก Just hoping you can still see that youthful, playful, healing energy that waits inside.

Jul 26, 2015 1:31 PM

Ferret, I will also share with you that I've not had an easy time of it since getting sick at 14 and basically having my health deteriorate from there. I was told by teachers I would fail in my classes and the "real world." I was called into the principal's office so many times I lost count. I had similar issues with certain college professors until I learned the art of choosing classes that would work around my schedule and reading the reviews of professors closely for how they treated students. Now I'm at the culmination of 9 years of harassment at my job and realizing I really don't have to put up with it. Don't let anyone put you down, or in a box because you make them uneasy. People really don't know what to do with the young and not so visibly challenged disabled coworkers, friends, lovers, or acquaintances they are surrounded by day by day. All we ask for is understanding, awareness, maybe to not feel so awkward.

Jul 26, 2015 3:53 PM

It's been so long ago...like 1984. I could do just about anything I wanted. I hiked,camped and played sports. I danced often and did things spur of the moment. I slept and woke up rested.
Seems like someone else's life now. ๐Ÿ˜ข

Jul 26, 2015 9:12 PM

I have always lived a hard life so I can not say my life was normal but as far as my body feeling good, the last time I felt good was June 5, 1999. Up to that point, I didn't ache unless I did hard work for severla hours. And until then, I thought some pain was good. I guess that sill rings true. If we didn't have pain, we wouldn't know something wrong. The best way I could describe normal now. Is if I am in a hot tub for a couple of hours. That will make me too relaxed. But an hour later is what will make me feel like what I felt when I felt like normal. Then an hour or two later, I am back to nearly my normal with some reduction in pain. I wish I could afford one.

Ferret, I am sorry to say this, I know you didn't ask and I hope you don't get mad because you seem like such a dear person. First of all, I don't think you are an abnormal person. You seem very normal with a lot of problems on your plate. A lack of sleep. I was wondering, rhetorically, if you have a friend, therapist, grandparent, someone you can talk to face to face, that you can talk to these things about. I think this is a great place and I am glad you are here. But I hear you worry and fear and what is normal and being different from your peers. When I was growing up, I could not connect with my peers. I had to take care of my mother. I was responsible for everything in my house. Nobody had anything in common we me. But I loved older people because they listened and they always had good advice. They are great that way. Online is great but we still need someone other then our parents. We need our parents but the truth of the matter, we don't tell our parents everything. We should feel like we can but most of us don't. Hopefully you are the latter. But it sounds like you need someone to listen to you and give good advice. I personally chose a therapist. They even said I knew myself real well. That I did not have anything I didn't have to work on that I didn't know myself or that I didn't realize. But I told them that I just needed someone to talk to. I was the listener in my house. Everyone else were the talkers. From my post you would think different. But I had to talk to someone and get some input from others. Like I said, you are normal. In fact you are very smart. You have helped me with natural supplements. I am now taking turmeric. I like it. I still got to look at some ot the others you said but have to wait til you post them again to write them down. Take care. I am sorry that you are in so much pain and your not getting sleep. That is a terrible mix. Best wishes

Jul 26, 2015 9:25 PM

Oh Ferretbandit, I wish with all my heart I could give you the description that you long for. I, too, lived a life of pain. My childhood was filled with pain and exhaustion and doctor appointments all for which I was told that I was lazy and that my Father was going to lose his medical insurance because of me. I used to cry and sometimes when I was in total agony, writhing in my bed, I didn't tell anyone because heaven forbid they lost their medical insurance and it was all my fault. It's a very sad process for a young person to go through. I think that people use the description of young people the way they do is because youth has been described like that for so long, there's never been a replacement and nobody has taken the time to reevaluate youth who sadly did NOT have energetic or pain free childhoods. I pray you can find the energy you need to keep pushing through to find the answers you need to get perhaps some relief. Until then, we are all no further away than a keystroke and you'll be in my thoughts and prayers. ๐Ÿ’•๐Ÿ™๐Ÿป๐ŸŒป

Jul 26, 2015 10:54 PM

I guess I'm just wondering who I might be without pain, partially because it is getting to be more bearable. On really low pain days, I can be social and feel like I exist, but everything still feels so confusing.

Profiler, you have a good point about a therapist but I have trust issues with therapists specifically, so I haven't really gone. Even when I do, I feel like they move the focus to things that just don't matter in my life. It's as if they want me to talk about things I've never felt.

I have been called smart by lots of people, but I always end up wondering why I have to be smart when other people can enjoy being silly. I may even enjoy it, I just don't sense things the way my peers do.

Always, sorry you had to go through being blamed for health issues. I have some money worries, just because I don't go to the doctor very often, and most meds are not prescription. I see a lot of surveys about chronic pain, but I haven't seen many for children/teens except for one through the local children's hospital.

I think for me, theater helped with a lot of coping skills. Also, thanks for ideas. I really appreciate it!

Jul 27, 2015 7:33 AM

Ferret, I just wanted to let you know that I didn't know if you could be silly for a lot of things. We usually rant or talk about serious matters. So I was just saying I could tell by your post that I know you know you must be smart. I had a very serious upbringing with all my responsibilities but people said that was sarcastically funny without being funny and that I was funny too. So I must I have been silly. I usually laughed but I never knew what was going to come out of my mouth. I just knew I would not try to hurt anyone. So you may be silly and not even really know it. I sure didn't. Yet people said I was hilarious. Now, they don't see me anymore which makes me sad. I wish I had the courage to get back out there in societ again. I use to love being around people. I still do. But my friends get together in groups and I can't handle several couples or families together. It is like a huge crowd to me and I hate crowds.

Jul 27, 2015 7:33 AM

Funny without being mean.

Sep 15, 2015 1:55 PM

I often think this to myself.

Honestly... I don't think I've ever had a childhood. My life has consisted of Mental health problems and health problems along with all sorts of other problems all piling themselves on top of each other.

For me there are certain criteria for it to be classified as a childhood. Things like: joy, socialising, energy etc. but I fit none of them and if anything am the complete opposite of them.
I hope that helps and in sorry it got into a bit of a rant

Sep 15, 2015 8:08 PM

I'm 15, an adolescent and a chronic pain sufferer. I grew up with what I was told was "growing pains," but I had otherwise pain free periods, accept from always having accidents and injuries and ending up in A&E.
I can only occasionally remember pain-free, I've had constant pain since I was 10 due to Ehlers Danlos Syndrome and it's multi systemic complications. I suppose it's like trying to remember is like trying to remember a strange taste or smell. It was something you take for granted when you're young and pain free. It's not being on edge. It's not gripping your sides. It's not thinking every moment through and checking symptoms at every occasion. It's having a choice!!!
But, to be honest, sometimes I wish I was like this from the get-go. Maybe it would be easier to cope with if you didn't know about life without sickness. Maybe if you were bought up with a support system and a network of care, then when you did get sick/injured/whatever it wasn't such a struggle building the support system.
Sorry. Sounding a bit depressing, I am :-/

I'm bed bound at the moment, so I've gone a bit crackers!

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