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How do you manage not being able to do what others can?

Jan 31, 2015 10:00 PM

I am 17 years old and I really want to know how to deal with not being able to keep up with people my age. Especially my friends. They don't understand my chronic fatigue. And I can't say that if I was in their shoes I could either. Does anyone have any suggestions to help with that?

Jan 31, 2015 10:19 PM

Hi Hannah. I am way older than you (52) so I may not be able to help you as much as someone closer to you in age but I have recently figured out what the Spoon Theory is. I also suffer from a great deal of fatigue, from fibromyalgia and probably ME/CFS. I have heard about the spoon theory and being a Spoonie etc. and think I figured out how to interpret it so I understand..... Regular people ( without chronic illness, pain, fatigue ect) have an unlimited amount of 'spoons' on any given days. Say that each task you perform in a day requires a different amount of spoons. So for example, getting out of bed requires one spoon, showering requires one spoon for me, maybe two spoons for someone else... Say making a sandwich requires one spoon, cooking a full meal requires 5 spoons and so on. So if I only have say 5 spoons for the whole day, I have to plan how I am going to use my spoons (spoons=energy). If I have used my five spoons by noon by getting up, showering, making breakfast and doing a load of laundry, I am done for the day and have absolutely no spoons or no energy for the rest of the day. If I borrow two spoons from tomorrow to make dinner, well, tomorrow I will be in a deficit. Tomorrow I will be extra tired and probably 'pay for' overdoing it. The regular Jane Smith, has unlimited number of spoons and can carry out any chore, job, responsibility she needs to without any significant consequence to her energy level or health for that day or the next etc. Maybe you can research it on the computer to have a more eloquent explanation of the Spoon Theory'. If it makes sense to you, maybe you can explain it to your close friends and family. Those that care about you and understand a little bit of what you are going thru may be able to 'lend' you one of their many spoons. Maybe they can run an errand for you, drive you somewhere, wash your hair etc... Good luck!

Feb 01, 2015 4:44 AM

Hannah, hi, it's tough being young and 'different', never mind the fatigue and pain issues.

Just wanted to 'and me' to Sandi's post: 'pacing' which is the phrase I and many of my friends are used to is key for me... But I use Minstrels as my 'spoon', as I prefer chocolate to spoons!!!!!

So much of this is down to how you look at the world- in the sense of positive outlook- learning about 'Mindfulness' got me out of a severely destructive depressive quagmire and back to life, just Google it.

Don't compare yourself to others, they won't stack up well against the groovyness that is you!

Hope this helps.

Feb 01, 2015 10:09 AM

Thank you guys! I appreciate the help so much. :-) it is very encouraging to me. I had heard of the spoon theory but didn't think to try it. I am going to see if that helps because I do have a tendoncy to get fed up with being sick and try to do a ton of stuff and end up REALLY sick the next day. This, I think, will help me. Again, thank you guys!

Feb 02, 2015 6:23 PM

Love the spoon theory Hannah that Sandi brought up. I use it often with my fibro. Check out the FMS/CFS self help website. Lots a good stuff there. Just google it.

Feb 03, 2015 12:16 AM

Okay, I will. Thanks Jesswoo76!

Feb 03, 2015 1:45 AM

Hi Hannah! Im Dejah, and even though I just turned 33, I can totally relate since I first became paraplegic at the age of 22. I was so scared my life was over, social or otherwise. But, it turned out my friends really cared about me. They were supportive, willing and sometimes downright pushy when it came to pulling me up out of my rut. You are very young and must fight everyday to get out and enjoy life...going through my windshield and having my car land upsidedown on top of me made me evaluate things and left me with this grand conclusion= Every teeny, tiny moment is so valuable. Let you friends know about your pain and fatigue, but fight to keep up as much as you can, if its embarrassing joke about it. I was cracking wheelchair jokes in the beginning, which my friends thought was pretty funny. Do whatever you are most comfortable doing, whats important is that your friends care about you and will want you to be comfortable and still have you go hang out. Friends should be supportive, and maybe your friends could slow down just a tiny bit so you don't have to fight so hard to keep up. Anyways, I hope you have a good one kiddo

Feb 03, 2015 11:19 AM

Hi Hannah. Thanks for sharing. It's super hard to deal with all that comes with chronic pain. I have FMS, endo, PCOS, and carb intolerance. I've been reading a book called, What Your Dr May Not Tell You About Fibromyalgia by Dr St Armand. This has brought me a lot of hope and I've been on the guaifenesin protocol for almost a month. At least it's pain with a purpose now! May blessings on your journey. I get frustrated too and I'm 38! Ha!

Feb 03, 2015 12:46 PM

Hey Hannah, sometimes it's really hard. I see folks doing stuff, even as menial as shoveling snow like I used to when I was younger, mucking horse stalls, grooming, riding, etc. even going out dancing which is something I've always loved to do. I stopped working because of my pain and diseases when I was 36 and I'm now 50. When the "good" days come, it's hard not to run out and do all the things I love and to not overdue it. I tell myself on the "bad" days that there are days even though few and far between that I CAN do some stuff and to be greatful that I'm able. I also come on here and chat with my cmp family and feel better venting and knowing I'm not alone. Hang in there. You're a lot stronger than you think. Today's a "bad" day so I've got my favorite quilt, a squishy pillow, a beverage, a yogurt, my meds mans my recliner. I make no apologies any more for listening to my body and relaxing. I was out both Saturday and Sunday and then had to go to the doctor yesterday (had to shovel out first), so I knew today would be rough. I'm going to put my feet up, closed the blinds because the sun is killing my head (migraine) and since it's nice and dim in here, I'll eventually rest since I haven't been to bed yet. I couldn't sleep last night even with the sleeping pill. I feel loopy and exhausted. Oh well, another day in the life!! I hope you find something that works for you to give distraction and ease your pain. Hope everyone has a peaceful day and less pain.

Feb 03, 2015 3:49 PM

Hi Hannah, It's hard for each of us to accept the limitations of our bodies ailments. And each of us have both good & bad days or moments. I'm 53 and been fighting various health issues since my early 30s, the last 5-6 years being the worst. During these recent years I've learned to remain true to myself, looking out for my needs first. I'm honest with everyone rather than hiding my health issues and making up excuses. Turns out they're more supportive than I thought they'd be.

I guess what I'm trying to say is, accept that you won't always feel up to doing what your friends do, but you don't have to give up trying when you can. It won't be easy for you, but just take it one hour at a time, one day at a time. My heart hurts that you face this at such a young age, but I'm sure you will find the strength and courage to find your way through it...we're all here for you. Praying for you.

Feb 03, 2015 5:20 PM

Hi Hannah, I'm 14 with chronic fatigue and chronic pain. I feel the same, it's hard keeping up with my friends. I just wanted to tell you you're not alone, sorry I couldn't go give any advice.😊

Feb 03, 2015 7:21 PM

Hi hannah I am 21 and I understand exactly how you feel. I went from being a pretty active teen to hardly doing anything these days. It is hard not keeping up with people my age but I have learned to do what I can when I'm feeling good and resting more when I'm not. I don't really have any advice other than that. Remember your not alone ☺

Feb 05, 2015 12:18 AM

You guys are so encouraging. :-) I love all of your advice. And I am praying for all of you. And thanks, arianna123 for sharring. It is encouraging to have people around my age on here so I don't feel so out of place. (I don't mean any offense to the wonderful people out there that are older than I am.) being young and having pain like this makes me feel alienated at times because it's very unnatural for someone this young to feel this way. But I really do appreciate the support. I know I keep saying that, but no one else really understands and it makes me appreciate this community of friends.

Feb 05, 2015 5:49 AM

HannahM, no offense taken. I can relate to your comment about "unnatural," because I thought that same thing when the worst hit me in my 40s. Im certainly not glad any of the younger generations hurt so bad, but I am glad you have peers who can relate and help you. Hope today's a better day for you.

Feb 07, 2015 4:41 AM

I'm 16 and going through the same thing. Most days I feel like everyone has forgotten about me. I deal with it by talking in the phone with my good friends and trying to get out as much as I possibly can. I have fatigue too from my fibro but I also have neurological things going on that cause virtigo like symptoms and I can't walk. If they are truly your friends then they will understand. Just do as much as you can when you can. And don't over do it. I over did it last Saturday and I'm still paying for it. Also try joining a youth group like Rainbow Girls or Jobs Daughters. They are extremely supportive and it gives you motivation to get out. I've been in both since I was 12 and I've loved every second of it. The girls in those youth groups truly love you and will support you all the way.

Feb 07, 2015 9:13 AM

Thanks, Rainbowgirl00. :-) I will look into those groups.

Dec 11, 2016 8:56 PM

Hey, I'm 20 and have got CFS, another group I would recommend is AYME, it's a website designed for younger people with CFS and ME, they have a load of forums where you can chat with people who are going through what you are. I've found it so useful when I was first diagnosed and everyone is always up for a chat :)
I've found it so hard trying to keep up with everyone and having soo much less energy than I had before I got CFS, but I learnt the hard way that actually I had to make myself and my health come first otherwise I was going to be constantly feeling sick, if your friends are true friends then they will understand that you don't attend certain group activities and outings or when you have to take things at a gentler pace as you aren't feeling up to much on certain days. But those friends that are worth keeping will stick around and look out for you and that's what I've found.
The full website is ATME.org.uk but you should find it is you Google AYME, I hope this helps and that today's a good day

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