I am a 22year old girl who try's to lead a normal life but my illness gets in the way, I can't do a lot of things like a lot of other 22 year olds do...
just wondered if anybody else out there has the same conditions as me as haven't met any body as yet and wanted to know how they deal with day to day life...
thanks for ready
Danielle
Yes i know what you mean all too well. Im 24 years old been sick with CFS for 6 years. Its been torturous I'm tired all the time and in pain all the time no energy to do anything normal or if I do do something I relaspe and then I'm stuck in bed regretting I even did anything. Its sad we shouldn't have to live like this at a young age because no one understands what chronic fatigue syndrome is like unless they have it. I don't get to hang out with friends and sometimes I choose not to since they don't understand how bad I feel I would hate to keep saying I'm tired or I can't do that i have no energy so I just avoid social settings all together.
Hi Danielle
I have had M.E for three years and I am 55 but only diagnosed this year . I gave up work last may as I had been struggling.
Pacing helps me, resting before and after activities but I cant do anything like I used to as I was a busy person rushing here and there, it can be frustrating and have just cancelled a weekend away that I had planned last year.
Try doing things you love but be selective and kind to yourself
That's exactly how I feel!!
Constantly tired, want to do something but in my head I'm thinking about the consequences if I get tired how can I explain the situation and want to go home after half an hour! I'm really glad I'm not the only one feeling this! But you are right a lot more needs to be done about this and explained a bit more to people just because we "look fine" people think we are fine but we really aren't! And that's what gets me down more!!
Thankyou for your help!
Yes I had to stopped working last year as I couldn't cope reduced hours to 2hours a day and still couldn't cope!
I've started to love my condition a little bit more than hate it! Just so hard sometimes trying to do things that I wished I could but can't!
Yea that gets me super depressed. People think we are lazy when we are just tired. And not working a 9 to 5 plus overtime tired its excruciating I wish ppl could just feel what we feel for one day. Then they would understand!
Yes I totally agree on that one!
Maybe one day we have answers!
The only way to describe this is having really bad flu!
Hopefully things will get better
My problems started at 17, I am 58 now,taking it easy and slow are the only things that help and rest, I have had 3 relapses in the last 15 years
Wow really that long!?
Must be so awful for you!
How do cope with day to day life?
I've had ME for over 10 years and I think it's a matter of finding your own level of how much you can and can't do. If you overdo it then next time don't do quite as much.
Don't fight sleep in the day time. I've heard people saying try not to fall asleep in the day time so you'll sleep better at night but if you fight it it just makes you worse.
I keep saying this but it's such a help to me; Valerian, a herb, for a good night's sleep.
Yes I agree! The main key is not to over do it!
People say not to sleep all the time cause you won't sleep at night but I will sleep in the afternoon but will still sleep at night but never ever feel refreshed!
Just do what you can Danielle. And stay as positive as you can by concentrating on the positive. So for a long time I would think about all the things I was not able to do on any given day and that would make me sad, frustrated, guilty etc. A counsellor advised me to just look at life differently so congratulate myself for the tiny thing I did actually achieve that day even if it might not look significant to anyone else. Because other people who are not ill can do lots of things which don't take much effort for them. We have to make much more effort. I find that thinking like this really helps me stay positive. Good luck.
Me too Danielle, I feel rubbish without my afternoon sleep and I still usually sleep all night. Sometimes I've been known to sleep for 19 hours in a day and I just think well I must've really needed it.
By the way I don't call it my afternoon nap because it's a full on, probably snoring, 2 hour proper sleep.
I meant to say I never feel refreshed either, just heavily brain fogged but I do feel worse if I sleep less.
Well said Mo!
I was like you, missing all the things I used to do but now if I can manage to do something physical, like cook a meal or have a shower I feel really pleased with myself, as though I've just won an Olympic medal!
It's better to be positive about life than negative and even with ME we can still be optimists.
Yes I need my afternoon nap aswel if I don't get that either I am so misrerable and I can't think 💠straight either!
Ooo wow that's a long time, the best thing I did was buy a dog! If I didn't have him I would be in the bed 24/7!
Thankyou very much for that! I will definitely keep that in mind as I do think negative all the time and what people might think about me! I'll do what I need to do and that's all that matters!
Thanks for your comment
Well said Georgia 😊
Lol I should've said it wasn't 19 hours straight through! I woke up to go to the loo and eat and things.
I thought about getting a pet but I just don't have the energy for one. Even cleaning a fish tank would do me in!
Yah sometimes the only thing that wakes me up is to go to the loo haha!!
See the dog was hard work but he just sleeps when I sleep now which is good, I love having him! I can talk to him( I know quite sad) but he doesn't answer back and listens and sometimes he's the only one there for me!!
Most of the time he is hard work but my neighbors have him when I'm really in a bad way which is a bonus!